A few years ago I started reading You Can Heal Your Life* by Louise L Hay, and immediately fell in love with the idea of using affirmations in my daily life. At that time I would choose one or two specific affirmations and repeat them to myself, often whilst standing in front of the mirror, and the change it made to my mood was pretty incredible.
But over time I fell out of the habit of using affirmations and wanted to do something to encourage myself to get back into using them regularly. I also wanted something pretty to put on the walls I looked at every day, as my health began to deteriorate and I ended up stuck inside more days. And so I created affirmation printables.
If you’ve been following me on Instagram or Facebook for some time, I’m sure you’ll have spotted them behind me in some of the photos I share from my bed. You may be wondering why I still use affirmations that promise to “heal your life” when my health has been deteriorating, but the thing is healing is not just a physical thing, it works on all levels including an emotional one. Affirmations keep my hope up that better days are ahead, and remind me that I can survive anything that life is currently throwing at me.
How to use these affirmation printables
If you’re going through a rough spot, why not try printing some of these affirmations out and putting them somewhere you will see them each day. Then just try repeating them to yourself whenever you spot them, and see what a difference it makes. I’ve listed what each affirmation is recommended for by Louise Hay, and you’ll notice there are some common themes running throughout the affirmations I chose.
However I do believe that all affirmations work for any issue you may be dealing with, because of the shift they make in your emotional and mental well-being. So feel free to pick and choose the one(s) that feel right to you. Simply click on the image to be taken to a PDF printable version. And if you want more affirmations to try, check out Louise Hay’s website.
Affirmation Printables for:
Fibroids and Tumours
Post Nasal Drip
Download all of the Affirmation Printables in one go
Disclaimer: please note that this post includes Amazon affiliate links, which are marked with an asterisk [*] wherever used. If you click on these links and then purchase the item, I will receive a small financial payment, as explained in my Disclosure Policy. I only use affiliate links for items that I have used and enjoy and would recommend even if I weren’t receiving payment for including them.
As you may remember, I chose the word “Change”” to focus on this year, because there are a lot of things changing in my life at the moment. So I thought it would be helpful to try and make a record of the changes that happen, as well as the changes I’m making, month by month. By doing this I hope to see progress even when it feels like none is being made. Because let’s be fair, change is messy, and often it feels like you’re getting nowhere.
I’m glad that I decided to do this, as January has already brought with it multiple challenges. I find it hard to believe that we are only just ending the first month of this year, because it feels like we must be in at least March already! So, without further ado, here’s what’s been happening this month.
The Flu and Labyrinthitis
To say that this year has started on a bit of a sour note would be a massive understatement! Having struggled through Christmas with a stinking migraine, I was gutted to start feeling what I thought was a cold brewing a couple of days before New Year. Only it wasn’t a cold, it was full blown flu! I’d forgotten just how ill that makes you feel, and spent the first week of January feeling rotten indeed.
I then felt like I was recovering pretty well, but then last week I started to feel rough again and last Thursday and Friday had what I thought was migraine related dizziness and tinnitus. Until I woke up Saturday morning to the room spinning, tried to sit up, and face-planted the bed as I was hit by such awful vertigo that I lost which way up was. 6 days later, still battling ongoing dizziness, I went to the GP suspecting labyrinthitis (the last time I felt this bad was when I had it in 2008) and sure enough the GP agreed with my suspicions.
So, all in all the first month of 2020 has been a pretty rotten one. And the only changes healthwise have been to add nasty viruses on top of my already rubbish day-to-day experience.
Seeing the Neurologist and Changing Meds
Despite the awful start to the year healthwise, I did have a reasonably decent week mid-month when Tim and I travelled over to Nottingham to see a neurologist about my chronic migraines. I was so worried about how I’d cope with the journey and staying in a hotel (because I knew I couldn’t do two journeys in one day). And the first night was rough, as I had forgotten to pack my Cyclizine somehow and we had to find a pharmacy open that evening, leading to a major panic attack around how much of a burden I am. But we turned the trip around the next day, had a good appointment, and even ate at a pie shop on the way back to the hotel!
But back to the Neurology appointment. In terms of shedding light onto why my migraines have become so bad, it was a bit of a bust. As the Neurologist said, sometimes they don’t know why this happens in people prone to them. But as I used to get them as a teenager and then didn’t get them for years, there is hope this spate will eventually ease off too. And until then, there are different options we can try.
I told him I had stopped taking Pregabalin over New Year (faster than recommended, but as I’d missed some doses anyway I decided to just go for it). I felt as if it did nothing for my migraines, and wasn’t sure if my dizziness and fatigue were actually worse on it. And I did surprisingly well coming off it, to say I also had a flu at the time. He actually said he doesn’t know why it is prescribed for migraine prevention anyway. So I felt better knowing I had made a good choice in stopping it.
We talked about how I’d previously tried things like Amitriptyline (I did not cope well on even a tiny dose of that), Gabapentin (no effect), and Propanolol (caused my blood pressure to drop way too low). So he has recommended Pitozifen, with another couple of options to try if that isn’t successful. He did say it may not stop all my migraines, but should reduce the frequency and intensity. And he’d rather prescribe that as it is generally better tolerated than something else which I’m likely to struggle with given my past history with medication.
We also talked about limiting my use of OTC painkillers to no more than 10 days in a month. I knew that painkillers can cause rebound headaches in migraineurs, so had been trying to take small doses rather than hitting them with everything I had. But he said it’s frequency rather than dose that causes the issue, so he’d rather I take everything I can on the really bad days and try to avoid painkillers the other days. So we’ll see how that goes.
Finally, he’s recommended Riboflavin (vitamin B2) as that has been shown to help, so I’m adding that the to Co-enzyme Q10 and Magnesium I’ve been taking to try and help. Here’s hoping that once I’ve recovered fully from these viruses and got these new meds in my system I might see some improvements!
I began the year with a 7 day global meditation live streamed by Deva Premal and Miten. We did the Gayatri Mantra, and it was wonderful. I’d forgotten how much I love chanting for peace of mind. You can find the 7 days’ recordings here, or join in with the final day below. The songs at the end had me in tears, something was definitely shifting emotionally at that point in time.
After that I continued to do a chant each day, and then I joined up with the Angels 11 group to do a live meditation with them, this time the Chiaa Kriya. Angels 11 is one of the tiers offered by One Woman Revolution via their Patreon, and if you want to explore kundalini yoga in more depth I can thoroughly recommend joining Shiv and Ceemaj that way. However I know money can be tight, and so you can find so many free videos from them on their YouTube channel, including this short introduction to the Chiia Kriya.
Even though I had internet connection issues for the live meditation, I still enjoyed it. And after that 3 of us decided we’d continue to make it a 40 day practice, supporting each other via Facebook. We’re reaching the halfway point of that practice now, and it has held me up so much over the past week during my awful bout with labyrinthitis. Even when I could barely move without feeling the world was spinning, simply tuning in and chanting for 3 minutes made me feel like I was doing something to keep myself going strong.
One of the things I wanted to change this year was how much time I spend scrolling on social media or watching Netflix, opting to read more books and listen to more music instead. I can’t say I’ve been massively successful in this during January (I binge watched the entire 9 seasons of The Middle* this month!) But I have definitely reduced my time on social media, which has done wonders for my overall mental health.
I’ve avoided being sucked into news items which I’m just not in a good enough place to deal with right now. That’s not to say I’m not aware of issues in the world, it’s just I’m not getting too drawn into the details which just make me feel so helpless. I will step back into being more active around that at some point, but this month I definitely needed to prioritise my own self-care.
I’ve also enjoyed starting several new books (there was a time when I was a “one book at a time” kind of reader, but now I dip in and out of different ones all the time). I used my Christmas money to buy a range of books, many spiritual and health related ones, but also some fun reading ones too. I’ll try to write more about these in other posts, when I’ve finished each one.
The Power of Nostalgia
One of the things I’ve felt pulling on me very strongly this month is nostalgia. I want to re-read books I loved as a teenager, and listen to music that reminds me of being in the 16-20 age bracket, when life felt so much simpler. Back then I was still struggling health-wise, often very badly, but I had more time to rest and recover. And I honestly thought the world was my oyster. After years of feeling beaten down by life and wondering if things will ever get better, I need a bit of that hope.
I’ve made a playlist on Amazon Music that is essentially made up of all the Acoustic Folk style singers I adored listening to at that age, like Jewel, Dido, Eva Cassidy, and Beth Orton. I already had various songs from the first three artists in playlists I listened to in the shower, but realised there were many of their later albums I have simply never listened to. And then I remembered other artists I had totally forgotten about, so added them. Listening to the beginning haunting sounds of “She Cries Your Name” by Beth Orton took me right back to my late teens! Isn’t it amazing how powerfully music can do that?
Anyway, the whole reason I even remembered Beth Orton (and that song in particular), was because I was thinking about the TV show Roswell*. I had rewatched the series last year but suddenly wanted to re-read the books too. So I bought copies of the Roswell High books* I loved when I was in Sixth Form. They were written at the same time as Roswell was on TV, but despite having the same characters there are many differences between the two. And as a writer I find that fascinating. At some point I’m going to have to bring myself to watch the new version of the show, Roswell, New Mexico to see how they approach the story in yet another way. But right now I’m in nostalgia mode and not quite ready for a new version!
Anyway, it’s funny re-reading these books as an adult, remembering how differently I felt back then. And I’m hoping they will remind me of what I loved about reading as a teenager, given that I’m writing a YA novel myself. Because, let’s be fair, the past 20 years of my adult life have been pretty crazy and I’ve forgotten a fair amount of what it feels like to be a teenager.
But, back to the books. Having listened to the series I already knew well, I decided it was time I began listening to the books written in the Circle Universe. It took me a while to get into them, but I finished Sandry’s Book* and am just now listening to Tris’s Book* and loving the characters and world they live in. In many ways the magic in this world is more like the magic in my own novel – based on everyday workings with plants and sewing etc. It’s such a joy to listen to them.
Beginning to Write
I’ve also picked up my pen and paper and started working on The Brethren some more. At the end of last year I was given some incredible feedback by L Baumgarten on my novel’s outline, and have been eager to work on it some more. (As a quick aside, if you’re looking for some feedback on your writing, I can highly recommend getting in touch with Laura). But life was so busy at the end of last year, and I have been struggling with my health so much, so I haven’t really had a chance to do anything with it since then.
But this week I printed off The Ultimate Novel Planning Workbook*, so I could scribble all my notes and ideas in one place. I actually got this as part of The Writer’s Craft Super Stack on Infostack, but you can grab a copy via Amazon clicking on the link above. Anyway, I find writing notes and ideas down on paper really helpful, especially when I’m struggling to look at a screen for any length of time thanks to the dizziness and vertigo. So having this workbook to keep my thoughts and ideas in some kind of order is perfect, and I can’t wait to work on it some more.
I have other projects I want to work on this year too, including my kids’ stories, some more eBooks and guides explaining things like yoga to kids, and even resources for chronically ill people like us. I just need to feel a bit better first! Seriously, the ideas are there, as is the ability to put those ideas down in ways that reach others. The only thing holding me back is my health at this point.
Hopes for Change in February
I’m really hoping that things will settle down a bit over the coming month. I’m keeping everything crossed for the easing of my Labyrinthitis, and that the Pizotifen and supplements combination will begin to reduce my migraine frequency and intensity. Because if that happens I’ll be able to do even more to help myself, such as going for short walks and building up my core strength again via yoga.
I’m also going to have some reflexology, and am really hoping that it will begin to have an impact too. As I’ve written before, I am trying to learn to trust in my body’s ability to heal itself. Having lived with chronic illness all my life, it’s easy to fall into the trap of thinking that this is just my lot in life. But I don’t want to live that way, and so I’m making a concerted effort this year to try and change that perspective by actively doing things to help turn things around.
I shall continue with my daily chanting, and try to balance living in the moment with hope for the future. I want to be able to dream about the things I will work on, the life I want to build, without getting so caught up thinking about some far away future that I don’t notice progress being made right now. I know I still have a long way to go before I find a new balance that works for me, but step by step I am making changes.
So, how about you?
Tell me, how has your January been? And what do you hope February brings?
It’s World Mental Health Day today, and I wanted to take a moment to talk to you about the different ways in which our mental health can suffer. Because none of us are immune to this, no matter how much we may like to think we are. And so it’s important to remember that not being okay is not a sign of weakness, but rather a natural part of human life.
For some people not being okay is something that only happens from time to time. Certain events in their lives such as illness in the family, strained relationships, worries about work, financial insecurity etc can wear down even the most naturally upbeat and positive person. For them, their mental health may recover relatively quickly once the stressful situation is over. Or it may not. But it is very clearly linked to events happening in their lives, whether passing incidents that are soon forgotten or traumas they will carry with them for the rest of their lives.
For others, depression and anxiety are constant companions, cropping up throughout their lives without any kind of correlation to specific events. It may even seem that their lives are just one long stream of stressful situation after stressful situation, a pattern they cannot get out of no matter how much they try.
It’s Okay To Not Be Okay
The point I’m trying to make is that there are uncountable reasons why somebody may be struggling with their mental health. But regardless of the cause, mental health issues are hard, and it’s okay to not be okay.
So often we feel the need to hide behind a mask, never showing how we truly feel. I remember working in one environment where I felt discriminated against based on my health and ended up diagnosed with depression. I would get home from work every night, physically and emotionally exhausted, and sob for hours at the thought that it would never get any easier. Yet one of the cleaners at work mentioned how much he loved seeing my bright and cheery smile every day.
It’s often easier to hide behind a smile than to show the cracks, especially when already being treated as “weak” for some other reason (for me it was my battle with Endometriosis at that time). But it’s time we, as a society, began to accept that mental health issues are a normal part of life, so that we can end the stigma and begin to make it easier for people to be okay with not being okay.
Anxiety and Depression Can Show Up In Many Different Ways
Anxiety and depression are no strangers to me. Looking back I can see that I’ve battled with them many times over the years. But nobody ever told me that they could show up in your life in lots of different ways, so it has taken me years to recognise some of these for what they are.
So many times in my life I have thought that I must just be weak and silly, even allowing others to paint me with those brushes too, rather than seeing it for what it was – mental health issues. So I thought I would list some of the ways they have shown up in my life, in case any of these seem familiar to you too. Often the specific details may be different for you, but perhaps the feeling behind them may be the same, so I’ve highlighted the parts you may relate to. I’ve also tried to break them up into several key themes, for ease of viewing:
mental Health Issues Connected to Social anxiety
I spent most of my teen years terrified of my own voice. I couldn’t even verbally give our order to the man in the chip shop, even though I saw him every week, instead giving him a piece of paper with it written on. For this same reason I dreaded Drama lessons, for fear of being ridiculed. And when my friend persuaded me to join her church choir, I spent 7 months miming and feeling like a total and utter loser and fraud. And because I was so terrified, I couldn’t even tell the choir master how I felt. Until one day I couldn’t take it anymore and simply didn’t turn up. The anxiety of being there and failing to get over my fear and actually sing was suddenly greater than my fear of letting people down by not going. But I felt so embarrassed that I haven’t been back to that church ever since, and it’s been almost 20 years!
Following an incident at primary school, when I suddenly began to feel sick whilst sitting in front of the assembly awaiting to show my work, I developed Emetophobia. It started with a fear of getting sick at school, and so I began to avoid eating at school because I thought that meant I couldn’t get sick. Over time this developed into not wanting to feel full (it didn’t help that feeling full often did make me feel nauseated, thanks to my EDS), and so I began to eat less and less at home too. I dreaded eating out at restaurants, and began to avoid certain high risk foods. Emetophobia controlled so much of my teen years, including forcing me to make excuses to never eat at a friend’s house, and made me feel like an utter fool, because I knew it wasn’t rational but I simply couldn’t change how I felt. After several years of it not really being an issue, it has unfortunately reared its ugly head in recent years with how often I feel and get sick these days.
Mental Health Issues Connected To physical Illness and Disability
Having been a clumsy child, regularly at A&E, due to (at that point undiagnosed) Hypermobility, I became fearful of PE lessons as I simply didn’t trust my body not to hurt or make me fall over and injure myself. And that’s before we even talk about the fact that my legs didn’t seem to work in coordination with each other, and so when others were running ahead of me I’d be lagging behind, wondering why I was so useless at such a seemingly natural thing as running. So I spent years dreading PE lessons and feeling totally inadequate.
When I was suffering from Hyperemesis during my pregnancy, I honestly thought I just wasn’t strong enough to deal with “normal pregnancy sickness” for a long time, and allowed doctors, nurses, midwives, and people in general make me feel like I just needed to try harder and everything would be okay. Equally, when I was in labour I didn’t feel confident in expressing how I was feeling, and allowed myself to be dismissed on a couple of occasions when I really shouldn’t have. The first, when I said I really didn’t feel very well and they told me to get some rest without checking me, only to find out later I was actually really sick. The second being when I hit transition and the midwife didn’t believe I was anywhere near that point and dismissed me, only to get a shock when I gave birth a couple of hours later. Essentially I didn’t trust my own experience, because low self-esteem taught me to put others’ opinions above my own.
Because of how physically ill I am these days, and how hard it is to plan ahead with anything, I avoid making plans as much as I can. I hate to have to cancel, and so despite desperately wanting to see other people, I do not even think about trying to meet up with anyone. And when I do make plans, usually for things I cannot avoid such as medical appointments, I worry about whether I’ll be well enough for days, even weeks, beforehand.
Mental Health Issues Connected To Work & Education
Despite being very sick for a fair bit of my university education, including being diagnosed with Endometriosis and prescribed some really strong hormonal tablets for my time in Russia (which totally messed with my head), I always framed my experience as, “I blagged my way through that and don’t deserve to feel proud“, rather than seeing that I’d gained a good degree whilst being very poorly.
When working in a role I eventually realised I was ill-prepared for and totally overwhelmed by, I allowed myself to be framed as “not coping well enough” because I believed that was true. My anxiety left me unable to eat, sleep, or function in any reasonable way, and I lost the ability to stand back and look at what I had achieved, because all I could see was the one part I needed help with. And because the work had impacted my mental health so severely, I left feeling utterly traumatised and still struggle with feelings of both failure and having being failed.
These are just some of the ways in which anxiety has shown its ugly head in my life over the years. There are several more. As I say, these are very specific examples from my own life, but I hope that by sharing them it will help to shine some light on how many different ways anxiety and depression can affect our lives. It isn’t as simple as being sad or blue, although that can be a part of it for some people.
There’s more I would like to say, but I simply cannot look at my screen any longer. And in the interests of self-care, I am going to end this post here and leave you with the links to some resources you might find helpful. Please remember that is it okay to not be okay, but that doesn’t mean you have to accept it as something you simply have to put up with. There is so much support out there, and it is time we ended the stigma around mental illness, so that everyone feels able to reach out and say, “hey, actually, I’m not okay,” and receive the care and support they deserve. So please, if you’re struggling today, reach out to somebody.
So often in life it is really easy to fall into the trap of focusing on the negatives, isn’t it? We see all the things that haven’t gone our way, all the things we don’t have, and all the things we can’t do. And it’s understandable, because life is hard. But changing your perception can have such a massive impact on your overall well-being, as I’m sure you all know. It’s why daily gratitude practices are so popular, and it also explains so many of the “you can do it” positive affirmations you find splashed across social media these days. But what happens when life knocks you down and you really can’t do it? What then?
When Even The Smallest Things Feel Impossible
This is where I have found myself for the past couple of years. Chronic illness takes so much away from you, especially when it really impacts your ability to function on a day-to-day basis. When I first started getting sick, I was still able to work through the boom-and-bust cycle, and convinced myself that it was just a bump in the road. After all, I’d been chronically ill for years and had always managed to keep going or bounce back somehow. So I thought I just had to ride this wave out too. Except it didn’t work out that way this time, and I got increasingly more debilitated until even everyday actions such as taking a shower or washing the dishes became impossible most days.
All the planning in the world (and all the dreaming too) couldn’t change the fact that I was really sick. And coming to terms with the fact that I can’t do the things so many people take for granted has been an important step in my healing journey. We all have limitations and we need to respect them. In fact, I’m pretty sure that not respecting my limitations contributed to my becoming this ill in the first place. So I’d say it’s pretty crucial that we accept none of us are superheroes, and that some things are beyond our reach, whether for that particular season in our lives or because we’re simply never going to be able to do them. After all, even superheroes have limits!
But what I’ve come to realise over the past few months is that even though there are so many things I can’t do, there are just as many things that I can. I just have to change my perception of what constitutes a “thing”. Washing the dishes or taking a shower may have once felt like everyday, normal things that didn’t even require any notice whatsoever. But now? Now they are achievements worth celebrating. They mean that I have not only achieved the act of doing them, but that I’ve also achieved a better balance in my life enabling me to be well enough to do them. I’m beginning to learn to live within my limitations, to accept the times when they are simply out of the question, and as a result I am finding myself more able to do things without such major payback. I’m beginning to crack the boom-bust cycle a little bit.
Don’t get me wrong, I have a long way to go with that. I still regularly push myself beyond my limits and suffer as a result. But it’s usually for a good reason, such as a family gathering, getting to church for an important service, or looking after my family when my husband is ill. But the key thing for me has been learning to accept that sometimes in order to do something I have to not do several other things. If I want to have a friend round for coffee, I have to accept that once they have gone I am going to need to rest in bed. I won’t be able to crochet or read or even watch Netflix, but rather I’ll need to lay down and really let my body rest. But if I refuse to fight the “I can’t” and instead look at what “I can” do I’m better able to see what I’ve achieved.
In the example given, I’ll have not only had chance to catch up with a friend, but I’ll have also made a deliberate choice to rest, which in turn means I can do more things the next day. By more things I mean I might be able to sit in bed and read or crochet, but that’s an improvement on being stuck in bed with major fatigue had I chosen to push through the day before and refused to rest. Sometimes even choosing to rest is an achievement! I don’t always get this balance right, of course, because there is so much more that I want to do. And it can be incredibly frustrating to sit in bed and look at a pile of clothes and wish I had the energy to fold them and put them away, or to hear my son playing in the garden and wish I didn’t have a migraine making the sun too bright for me to go outside and join him. But changing my perception from “I can’t” to “I can” is having an impact.
Celebrating The “Small Things”
It doesn’t matter what is happening in your life, whether you’re going through a tough season or are living your best life, I think learning to celebrate the small things can make such a huge difference to your day. There are so many reasons why you may feel overwhelmed, even when living you best life!! Deadlines loom, family needs battle for your attention, bills need to be paid, sleep exhaustion affects your ability to think clearly, the news is downright depressing… the list goes on. When we are so focused on the “big picture” of our lives, it’s hard to notice the everyday, little things that all contribute to our success in surviving this crazy thing called life.
The smaller things may feel like greater achievements to me because of how sick I am and how out of reach the bigger things are, but that doesn’t mean they aren’t still huge achievements to everyone else too. Simply getting out of bed after a bad night’s sleep or when faced with a stressful day ahead is a sign of huge resilience and is worth acknowledging and even celebrating. I’m not saying we shouldn’t celebrate the big things, because we should, of course we should. All I’m saying is that we all have bad days, and on those days being able to celebrate our small successes is so important.
Changing “I Can’t” to “I Can”, one step at a time.
If you’re struggling to think of something to celebrate today, have a look through this list and see how many of the things you have done. You might be surprised at just how much you have achieved. I’ve tried to make a list that works for as many people as possible, from those chronically ill like myself or raising young children (for whom getting dressed is a major achievement!) to those who never seem to stop! So some of them will be more relevant to you than others. I’ve tried to split it into themes for easy reference, but they are very loosely categorised, and there is a lot of blurring between the lines. And it is far from an exhaustive list, it is simply meant to help nudge you into celebrating the “small things” we often overlook. After all, changing “I can’t” to “I can” is an achievement in and of itself!
Got out of bed
Ate breakfast/lunch/dinner (no skipped meals)
Made a packed lunch
Made it out of the house (on time)
Paid a bill/renewed insurance/dealt with paperwork etc
Work Related activities
Got to work on time
Completed a task
Met a deadline
Dealt with difficult colleagues/boss/clients/customers
Got everyone up (and out the door) on time
Spoke to someone at the school gates
Made it to parent and baby/toddler group
Listened to your child read/practised spellings/helped with homework
Survived another crazy day!
Spoonie (Chronically Ill) Achievements
Got out of bed
Had a shower
Had a nap (yes, this is an achievement for those who need it!)
Visited a friend/had someone visit you
Got enough sleep
Drank enough to remain well hydrated
Ate a healthy meal
Did some exercise (physio practice/short walk/run/gym)
Made a healthy food swap (eg decaffeinated tea/coffee, fruit snack etc)
Mental and Emotional Well-Being
Avoided being drawn into drama (in the family/on social media etc)
Remembered to breathe through the tough moments
Turned off your phone
Read a book/watched a film/listened to music
Went to bed early
Meditated (or any other mindfulness practice)
Made it to church/synagogue/mosque/spiritual gathering
Read some scripture/spiritual book
Prayed/spoke to God/Angels/Spiritual Guides etc
Spoke with others about your faith
I’d love to know what “small things” you are celebrating today. Why not share them with me in the comments?
Goal-setting is something I have heard of a lot over the past few years. Working, as I did, in online media, it’s hard to miss all the posts aimed at helping you become the best version of yourself and live your dream. And I have nothing against it per se, but it can begin to become toxic if you aren’t setting realistic goals.
Let me explain. Say, for instance, you want to get fit, but the last time you really exercised regularly was in PE lessons at school a couple of decades ago. Can we just stop for a moment and recognise how crazy it feels that it’s been such a long time since our school days? Anyway, back to my point. If you haven’t been very active for the past decade or so, then your goals need to reflect that. You need to slowly build up to where you want to be, even if that means it will take several years, because it’s better to make small progress and keep going than trying to go too fast and losing both confidence and motivation.
I’ve got to admit that I’ve always been someone with high aspirations and a tendency to set totally unrealistic goals. So, if you’re the same, I completely understand how you feel. Even as my life has become more and more limited due to the increase in my symptoms over the past couple of years, I’ve continued to set unrealistic goals. I’ve focused on the “one day” belief, that things will get better and I’ll be able to work again, volunteer with the church, have Little Man’s friends over for play dates, and even teaching kids yoga. And, to be fair, there’s nothing to say that these things won’t happen in future. But they are not things I can plan to achieve by setting goals along the way, because I’m simply not well enough to even make small steps towards them right now.
I can’t set a goal of writing n number of times per week, to keep my hand in as a copywriter. I can’t plan to stay on top of social media and learn new skills, so that in 5 years’ time I can return to self-employment. I can’t will myself to be well enough every week to help out at church. I certainly can’t set plans to exercise every day to build up my stamina for play dates. And whilst I hope to one day complete the training to teach kids’ yoga, I cannot set a time frame on that. Do you see how many “can’t” thoughts come out of trying to set goals beyond my reach?
Your unrealistic goals may be totally different to mine. The things I mention may be things you don’t even need to think about (I know they weren’t for me before I got this sick). But everybody has a limit, and far too often we ignore that limit and think we have to be more than that which we are. And that’s when goal setting becomes toxic, because it makes you feel less than, which is no fun at all. I can’t tell you how often I’ve felt hopeless, particularly over this past year, as the things I can do have become fewer and fewer. But suddenly I’m realising that if I start setting realistic goals I might have a chance to change that inner dialogue that tells me I’m not good enough and that things will never change.
The ironic thing is (I’m hoping it’s ironic, my brain is too fried to work it out), when I’m having a good day I’m terrified that things will all change and it won’t last. Because my experience is that good days are usually followed by bad ones. But when things are bad, I fully believe I may always be that way and change is impossible. And so I’ve started to believe that I cannot possibly set any goals in life, because there’s no point. But the other day something truly magnificent happened and I actually set some realistic goals without even really thinking about them.
It happened near the end of my initial assessment with the pain management service. I had just recounted all the health issues and symptoms, in great detail, to the assessor, and then came the question I always dread; “what do you hope to get out of this?” I always dread it because I never know what to say. But this time three things came out of my mouth, in quick succession, and in that moment I knew something had shifted in my perception. I had begun to accept the reality of how ill I am, and I had adjusted my expectations accordingly. This is what I said:
1) I want to be able to enjoy my hobbies again (eg writing, gardening etc) and do more with my son
2) I want to trust my body again, rather than fearing what it will do next
3) I want to be able to regain some independence, getting to a point where I can walk to the bus stop, get a bus into town, sit and have a drink somewhere, and then get a bus back home.
A few years ago all of these things would have been inconsequential. I would simply do them and never see them as an achievement. In the grand scheme of things, they could feel so small. And yet right now they are out of my reach, and I want to get to the point where they are achievable. And I truly believe that they are. Those “one day” dreams are just that, dreams for a day that may never come. But these are realistic goals, and things I can specifically work towards.
I still need to see the assessor again for a proper physical exam and the chance to create an actionable plan. That will be on Friday. But I know that with the right support, I can set targets that will help me reach these goals I’m aiming for. It may take me several years to get to each one, but at least I’ll be able to see progress along the way. And that fills me with real hope for the first time in a very long time. I’m not waiting for a magical relief from my symptoms, but aiming to be okay with this broken body of mine and to learn how to live well within my limitations. Because no matter how bad things may be, there’s always something you can achieve.
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In my previous post I briefly touched upon all the unprocessed anger and grief related to my life as a Spoonie, and the ways in which being chronically ill has impacted my life and broken my dreams. But the one emotion I’ve never managed to squash down and avoid is guilt. Perhaps this is because guilt is more of a blaming myself emotion whereas anger and grief are blaming something outside of myself. It’s easier to beat myself up when I’m feeling worthless, than it is to feel justified in wanting more.
I feel guilty about so many things these days including, but not limited to:
my inability to work and the financial implications of that
the burden I place upon my husband (who is also chronically ill) to care for me on my worst days
how rarely I manage to do even the simplest tasks such as preparing a meal or washing the dishes
how often I have to change or cancel plans at the last minute due to ill health
how terrified I am of even making plans in the first place because of the point above
But the guilt I find the absolute hardest to bear is how much my ill health impacts my son. As a Spoonie Parent I have to constantly navigate the fine line between pushing myself to do something that needs to be done regardless of how I feel, and saying no to things I’d love to do because of how I feel. Parenting is pretty relentless, there are so many times when I push myself beyond my limits to meet the needs of my child. Which means that I often have to miss out on the fun things in order to rest or reserve my energy for the necessary things.
Just this morning, for instance, I had to let Little Man down by staying home as he and daddy head out for the day. Several times he tried to persuade me to go out with them, and when it became clear to him that I really wasn’t well enough to go out he tried to insist he should stay home as well because he was tired (he wasn’t, he just didn’t want to leave me at home alone whilst they went out). And for the briefest moment I truly considered trying to push through my symptoms so that I didn’t have to let him down, because the guilt felt overwhelming (as did the grief about not being able to enjoy a day out with my family).
But the reality is that had I gone out with them, they’d have had to considerably adapt their day as my symptoms increased. Because today I have woken up with my back in spasm yet again, despite taking muscle relaxants the past couple of days. I also feel sick to my stomach and I have stomach cramps. And the fatigue is wearing me down, even though I have been up less than two hours and have barely done a thing. I can barely function at home, so there is no way I could have gone out with them.
But no matter how reasonable my reasoning for staying home might be, the guilt is still huge. I don’t want to let my son down. I don’t want to miss out on a fun day out. And I certainly don’t want my husband to have to entertain our son all day and then come home to have to look after me. It’s not fair, but it is the reality of life as a Spoonie Parent. It’s the reality of my life, and it makes me unbelievably sad. I know I shouldn’t be beating myself up about it, but I can’t help it. I look back at photos from when Little Man was younger, and it hurts me to see all the things we used to do together that we no longer can.
For the past 3 years, all the school holidays have been spent simply surviving. Little Man has Autism, and one of the ways that presents itself in his life is in a bundle of raw energy that needs to be channelled into something. Before I got sick I’d have planned days out, walks in the woods, play dates with friends, and even a games tournament at home. Nowadays we spend a large amount of time trying to find ways in which he can occupy himself whilst we rest, enjoying the tiniest snippets of time during our better moments doing things together, and then relying on family and friends to provide further entertainment for him. And it breaks my heart.
Don’t get me wrong, Little Man is generally a very contented little boy. Ask him how he feels at any given moment, and it’s usually happy. But I can see the disappointment in his eyes, hear it in his tone of voice, and sense it in his body language when I can’t do things with him because I’m too ill. He does his best to understand, caring for me in his own adorable ways, but he also has moments when he simply cannot understand and expects me to get better after a very short rest. Yesterday he even tried to “charge me up” by holding a cable to my leg as you would when charging a mobile phone or tablet computer, which was so sweet and funny that I couldn’t help but drag myself out of bed for a couple of levels of Plants Vs Zombies with him on the Xbox.
There is so much I feel proud of in my parenting of Little Man, such as the way I meet his emotional needs with the Autism and work with his school to get the right support in place for him there too. And I know that ultimately, despite how much I wish it weren’t this hard, he is learning huge amounts of compassion from a very young age. He is the sweetest, kindest, most caring boy you could ever hope to meet, and he is much loved by our whole community. I feel proud that despite everything we’ve been through over the past few years, we’ve created a home environment that has nurtured his individual needs and enabled him to bloom into the beautiful soul that he is.
And this is where things get really muddy in my emotions. I know I am a good mother. I’d go as far as to say I’m a bloody good mother. Which is why it hurts me so much to know that a) I am missing out on huge chunks of opportunities with my boy due to my health issues and b) I’m too ill to have a second child, consider fostering, or even just be the “cool parents” who are able to let their kid have tons of play dates and sleepovers, because they only have the one child’s needs to meet. I’m good at this parenting malarkey, I’ve always adored being around children (my mum became a childminder when I was 9), and my entire youth was spent dreaming of the day I could both work with kids and have my own.
I never imagined that my health would take such dramatic turn for the worse, effectively closing off so many doors to my dreams. But because it has, I have desperately chased different dreams over the past few years, trying to push aside the grief that was all too raw for me to feel. And I cannot help but wonder whether the choices I have made and the things I have done have directly contributed to how ill I am right now. Would I have been so sick had I not been so desperate to help other women avoid going through what I had and give new meaning to my life? Would I feel so guilty now if I hadn’t been so hell bent on fixing things in the past and instead just dealt with my emotions and embraced my life as it was? Did I waste the baby and toddler years, worrying about things I couldn’t change instead of just enjoying the years that flew by so quickly?
I don’t know what the answer is to any of these things. I imagine they are somewhere between a partial yes and a no, rather than a definite yes. But these are the things I think about on the hard days, when I have to package off my son into the care of somebody else, as I am too sick to go out and enjoy the school holidays with him. That boy adores me, and once he is home I know that we will enjoy all the little moments we have together completely and wholeheartedly. But right now? Right now, the guilt feels huge.
As you may have guessed from my previous post, I’ve been feeling pretty down about things lately. In some ways this is a huge leap forward for me, as I have spent a lot of my life trying to avoid this kind of feeling. I haven’t wanted to become a victim of my life’s circumstances, choosing instead to find a positive spin for most things. And I’ve brushed aside comments from others along the lines of, “I don’t know how you deal with all of this,” because I’ve chosen to ignore the fact that my life is far from normal in many ways. But as helpful as this has all been in helping me to keep going through thick and thin, it hasn’t been very healthy.
Because my life isn’tnormal. I suffer from multiple chronic illnesses that deeply impact my life, and that of my family. The constant fatigue, migraines, nausea, joint instability, and muscle spasms mean that I struggle with some of the most basic activities, such as taking a shower or preparing a meal. I can go days without doing either of these things, relying on my husband (who is also chronically ill) to bring me food and drink, and help me survive whilst stuck in bed. And on my worst days even lying in bed feels too taxing, as my heart races and my head spins.
Sometimes I know the cause of my most recent flare of symptoms, like a sudden change in temperature or catching yet another virus (having a young child makes this inevitable!) But at other times I have no idea what has caused me to go from functioning reasonably well to totally incapacitated, and I struggle with this aspect of my ill health the most. After all, how can I possibly hope to ease my symptoms and reduce the likelihood of another flare if I don’t know what the cause is?
This lack of control is deeply disturbing, and as a result I have clung desperately to the hope that one day (hopefully soon) I’ll gain a better insight into my health issues and figure out a way to get my old life back. But more and more I am realising that wishing for my “old life” is neither productive nor wise. Sure, it would be wonderful to no longer feel sick on a daily basis and be able to do more with my family and friends. And financially we’d be much better off if I could return to work and get out of the cruel benefits system that treats those of us who are ill as worthless (on a side note, it has now been over a year since my PIP assessment and I’m still waiting for a date for my tribunal hearing). But the point is I’m beginning to realise that I’m wishing for the wrong things.
Instead of hoping to somehow miraculously recover from the worst of my symptoms, I need to be working on accepting where I am right now. Instead of focusing on what I can’t do, I need to look at what I can do. For instance, I’m currently creating a website for our church and, due to a combination of school holidays and this most recent flare of symptoms, progress has been very slow. My anxiety over this has increased the more time that has elapsed, as I feel like I’m letting people down. Yet multiple times this week people have reminded me that I’m doing something nobody else in the church can do, and even if it takes me several months to complete it will still be a very valuable contribution.
On a rational level, I can see how flawed my thinking is. I’m valuing myself on what I can give and not on who I am, because who I am right now feels like a complete and utter failure. But instead of feeling angry at the cards I’ve been dealt, I feel angry at myself for not handling things better. Instead of acknowledging the grief related to the loss of my health and the dreams I had for my life, I’m punishing myself for not making better choices. And by refusing to accept this as my new normal, I’m denying myself the chance to truly grieve.
But I want to be able to face the reality of my situation and begin to feel all the emotions that come with that. I want to readjust my measure of self-worth so that I can celebrate the small victories (like making it out of the house) without comparing them to things other people do. I want to love myself enough to know that it’s okay to be angry about all I’ve lost, without having to justify that anger and pain. Which is why I have chosen to rebrand the blog to reflect this, giving me the space to come and share my thoughts, feelings, and experiences as I begin to explore living life in the slow lane.
Because that’s where I’m at right now, in the slow lane. Everything I do takes much more time and effort than it used to. I’m no longer planning what I’ll do next week, month, or year, and I’m certainly not able to plan out a future for myself. All the media messages about doing and being more seem irrelevant to me (and make me angry, if I’m completely honest with myself), because I’m having to learn how to do and be less. And my biggest dream right now is to feel well enough on a day-to-day basis to simply potter around the house and garden, do a bit of crafting, and enjoy a bit of company from family and friends.
Life is suddenly all about the simple pleasures, and letting go of the big dreams that are no longer possible. It’s a huge change for me, and one which requires a lot of mental effort in facing the inner demons that scream “this isn’t enough” and “you don’t deserve this”. I’ve got to learn how to grieve for the losses and redefine my self-worth as a sick person. And I’ve got to accept that there truly is no quick fix for this, it’s a journey that I cannot rush. This is life in the slow lane.
Do you believe that your body has the ability to heal itself? Or do you think that some things like age, chronic illness, and mental health problems are beyond any natural healing ability we may possess? Are some people naturally gifted with good health, whilst others suffer with no hope of a life beyond their limitations, or do we all have the opportunity to gain optimal health, whatever that may look like for each one of us?
learning to distrust the body
I’d love to say that there has always been a part of me that at some deep level believed in the body’s ability to heal, but to be honest with you that simply isn’t true. I have been sick, to some degree or another, for most of my life. I was diagnosed with Asthma aged 2, and so some of my earliest memories are of concern over my ability to breathe comfortably. Whilst I seemed to naturally outgrow this particular challenge, by the time I reached puberty other health issues had already stepped in to take their place.
My hypermobile form of Ehlers Danlos Syndrome (hEDS) had made me so clumsy I was regularly at A&E for an x-ray or because I’d got concussion or needed a wound cleaning. And once puberty arrived I was debilitated with crippling cramps, horrific nausea, and incredibly heavy and irregular periods. My teen years were spent trying to cope with these changes in my body, things I believed I had no control over, and I ended up heading into adulthood thinking that this was just my lot.
belief in others vs belief in self
As a result of this, I began to trust in doctors and medication as my only real option for any semblance of a “normal” life. And whilst there is nothing wrong with putting faith in modern medical science, there is a real danger in putting all of your hope into a medical system that still has no answers for many health conditions affecting the world today. If I had an accident and required emergency treatment, for instance, then I would seek out the help of a trained doctor. Likewise, if I developed an acute infection, I would visit my GP. These are areas in which modern medicine excel. But when it comes to chronic conditions, this is often far from the case.
My own experience has been one of seeking help from a variety of doctors and specialists over many years, always putting my hope in the chance that this doctor may finally have an answer for me, and almost always being highly disappointed. I was 17 when first diagnosed with Hypermobility, and 31 before anyone mentioned the term Ehlers Danlos Syndrome to me, explaining that my digestive health issues were probably connected to the same condition affecting my joints. But even with that explanation, there was no real helpful treatment options.
Endometriosis is another condition which has plagued my life, leading me to be on some form of contraceptive since I was 15 (most with very negative side effects), and going through no less than 4 pseudo-menopausal states in attempts to limit my symptoms. Yet you can imagine how many extra symptoms those brought up for me. So, you see, putting all of my trust in the doctors who have no real answers as to why these conditions occur nor how to adequately treat them, led to a deep distrust of my own body. If the doctors can’t even manage it, then how can I?
changing the dynamic
Which brings me to where I find myself today. After 3 decades of believing I was simply a “sick person”, whose lot in life was simply one of physical pain and discomfort, I am finally starting to challenge that belief. I’ve spent the past 3 years of my life becoming increasingly more and more debilitated, to the point where my body barely functions most days. I can trace the initial increase in symptoms to a very specific point in 2015, when a virus combined with a very busy period in my life led to a complete overwhelm of my system. And yet I know that whilst this was the tipping point, it wasn’t the start of this downfall.
A series of events following my pregnancy and becoming a parent to a child with additional needs, led me to disregarding my body’s own needs and placing everyone else’s first. This was a recipe for disaster, given my body’s natural disposition towards ill health. But I didn’t listen to my body’s needs, nor the messages it sent me through my intuition and increasing symptoms. Because I already believed that this was simply my lot in life, to suffer. And that belief goes right back to my childhood.
This ill health I have now is not a new thing, it is something that has developed over a lifetime of distrusting my body, and placing my belief in external sources rather than my internal ability to heal. And when I began to realise just how far back this goes, I realised that I had impossible expectations of what healing might look like. I was hoping for a “quick fix”, something which would take away the most unpleasant symptoms I have each day, rather than building up healing and resilience from my very core beliefs about myself. Those “quick fixes”, which are often medications to alleviate symptoms, are fine in and of themselves, but they won’t lead to long-term healing. That has to come from within.
healing to your optimal version of health
Now, before I go any further I want to make something abundantly clear. I am not proposing the idea that the body can heal from anything and everything. This isn’t some ‘miracle cure-all’. Neither am I suggesting that it is our own beliefs that cause illness. Such thinking is overly simplistic and, quite frankly, dangerous. It suggests that those with serious health conditions can simply will themselves to be better through the power of positive thinking. And that’s bullshit.
Too often those of us in the chronic health community are told that if only we did this, or changed that, we’d miraculously heal. Such recommendations, no matter how lovingly given, are dis-empowering at best and damaging at worst. People need to be believed, they need to have their symptoms respected, and their daily efforts recognised. Life is hard for all of us, and for some people that is most profoundly felt through their physical and/or mental health.
But that doesn’t mean that those of us who do struggle with our health cannot aim for our own personal version of optimal health. And that will look different for everybody. For me it means that I will always have a genetic condition that affects the connective tissue in my body, and so I will always have to adapt what I do to support that rather than aggravate it. Yoga postures must be adapted, diet must nourish without irritating, adequate rest must be incorporated into my day, and some days I’ll just have to accept that it’s a bad day and in order for my body to heal I need to honour what it’s telling me in that moment.
The same goes for my anxiety and the pain felt regarding certain events that have happened in my life. No amount of positive thinking and lifestyle changes will affect my ability to have more children. But I can work on honouring the fact that my body carried and gave birth to this beautiful child of mine, and that my love for him is enough. I can stop beating myself up for not doing more, and cherish what I can do.
healing work is sacred work
Over on instagram, my profile says that I am on a “sacred healing journey”. This is something I came up with last year, and it has stuck. Healing requires going into the very depths of your being, having the courage to face the darkest parts of your soul, and learning to trust in your body’s ability to heal. If that isn’t sacred work, then I don’t know what is.
But it’s hard to recognise the power and impact of what you’re doing, when it feels like you’re simply lying in bed, or battling through your inner demons just to make it through the day. Some days it feels like you’ve done nothing but simply survive – and that’s sometimes exactly how it is. You need to acknowledge these days as a part of your journey, but don’t let them define you. Because those days are the ones which remind you of your feelings of inadequacy and powerlessness. Those are the days which whisper that you aren’t enough, and that this is simply how it is. Those are the days you simply have to survive, knowing that a new day will come.
And when that new day finally comes, you do the sacred work. You go within, you trust yourself, and you learn to find a new way of living. Sacred work is beautiful, but it isn’t easy. It means facing those parts of yourself that you hate the most. It means working with your limitations, rather than trying to work despite them. And it means knowing that it took you a lifetime to get to the place you are right now, so it’s going to take you a lifetime of learning to trust yourself and your body. This isn’t a quick fix. This isn’t a cure. This is life.
trust your intuition, choose your tools, and find your community
Because sacred work is so hard, you need to surround yourself with the tools and community to support you along the way. Nobody can hope to do this alone. There is a reason that humanity has long sought community with those who are also on the same path – we need friends who understand where we’re coming from and will walk with us. In the past this was often limited to what was available in your local area, but nowadays you can easily connect with people from across the globe via the internet too.
Of course, the problem with this is that there can often be too much information and too many options to choose from. How do you know what will work for you? Well, I’ve found that the best way is to try out a few things and see what your gut instinct is telling you. If something feels right, go with it. But if something feels wrong, drop it, even if everyone around you thinks it is the best thing ever. It is only the best thing if it feels right to you.
I experienced this recently quite significantly. During meditative time (which I have always resisted), I felt an overwhelming rush of love, and realised I was far from alone. From that experience, I began to realise areas where I had been trying to control the uncontrollable. For me, this was most pronounced in my diet. Because of my digestive issues I had gradually restricted my diet more and more over many years, and I had ended up surviving on mostly dry carbs (jacket potatoes, oatcakes etc) and snacking rather than eating proper meals. I was missing out on so much protein and fat, and not allowing my digestive system the power to work effectively (and it’s a sluggish system, so it needs all the help it can get!)
As I began to consider changing my diet, bringing in foods I’d have never eaten before through fear, I started out on the Autoimmune Protocol (AIP). However a week into it I realised that it was not healthy for me. I was beginning to fear eating the wrong things, and my body was wanting less meat and a few more carbs. So I followed my gut (pun intended) and dropped the AIP diet in favour of trusting what my body was specifically asking me for. I had begun to recognise the difference between a craving (chocolate) and an actual need (carbs), as well as recognising that my body was happier eating stews and soups rather than roast dinners.
About a week later I stumbled across an Ayurveda dosha quiz, and discovered that my constitution is strongly Vata (air). The description of Vata not only perfectly described my natural characteristics, but it also explained many of my current symptoms. It even recommended eating soups and stews, to avoid food that was too “dry”. My intuition, once I actually tuned in and listened, had told me the same thing an ancient medical practice was also suggesting. By learning to trust my body’s ability to heal, I had tapped into what I needed.
Whatever tools you choose to use, and whichever community you choose to join, remember always that flexibility is the most important thing you can ever embrace. Your needs and preferences will change over time, both as you age and as the circumstances in your life ebb and flow. What works for you now will be completely different to what worked for you last year. So don’t feel as if you have to stick to something long-term if it isn’t working for you anymore. Try new things and go with the flow.
belief is everything
More than anything else, healing is only possible when you believe it is. This has been shown countless times within studies using placebos, for example. That’s not to say that the things you do or take, be that lifestyle choices or pharmaceutical medication, have no effect. Of course they do. Exercise has an impact on the body. Meditation has an impact on the body. Diet has an impact on the body. Medication has an impact on the body. It all does. What I mean is that it is your belief in the possibility of healing that amplifies the effect.
For instance, I have been seeing the herbal medicine team at my local college for about 18 months now. I have a review with them every 4-6 weeks, and we tweak the tincture accordingly. And whilst there was a small, immediate effect from taking the tinctures, it was only once I truly began to believe that this medicine had the power to change my life that I started to see real effects. And, interestingly, most of the effects have been psychological rather than physiological so far.
I’ve begun to trust in my body’s ability to heal itself, and been making changes accordingly. I removed my Mirena and became contraceptive free for the first time since my teens last Summer. And over time I have started to understand and accept that some of the very physical challenges right now are not going to vanish overnight, because my body has to rebalance itself after years and years of neglect and abuse on my part. I have hated on my body for such a long time, learning to love and trust it is a huge thing. And I truly believe therein lies my ability to heal.
How do you experience God? Do you ever feel a physical experience of the Divine surrounding you? Or is it more of a faith-based experience of trusting that God is there, even if you never feel His presence?
For me it has been mostly the latter, although I have had times in my life when the former happened too. And I’ve been desperately hoping for that overwhelming physical experience of being surrounded by love and support for quite some time. But I just couldn’t find it.
pushing God away
If you’ve been following my journey, either here on the blog or over on instagram, you’ll know that life has been unbelievably hard for us over the past few years. It all started in 2011, when the pregnancy I had dreamed of for as long as I could remember, turned into the hellish torture that 9 months of Hyperemesis Gravidarum and additional complications bring with them. During that year my entire experience of who I am and who I thought I was meant to be came crashing down.
The following year, as my baby began to grow up faster than I thought possible (how could the months fly by when a year earlier they had dragged into a seeming eternity?) I remember being so angry with God. Why had He made me so deeply maternal that all I had ever dreamed of was becoming a mother, if doing so was going to destroy my body and my soul? I had to choose not to have another baby, and it broke me.
Which led me to starting to write a book and working closely with a charity supporting women suffering from severe pregnancy sickness. I thought that maybe this was the reason for my suffering, so that I could use my writing and organisational skills to help others. And in my desperation to find a new purpose (and avoid the deep grief I was feeling), I ignored all the warning signs that this wasn’t where I was meant to be.
reaching breaking point
Which leads me to 2014, which I have described in the past as my “breaking point”. It was a year in which I should have been happier than ever, but in reality I was falling apart. I was ill-equipped for the role I ended up in, and by the time I learnt the importance of boundaries I was already broken. I remember walking to pick my son up from nursery and I would just sob the entire way there. And I remember lying awake at night, running conversations around in my head and feeling sick with anxiety over it all.
In reality, my time working to support others was more traumatic to my mental health than my pregnancy had been. And the impact of running on that much adrenaline for so long began to have an effect on my physical health too. By the end of 2014 I had been signed off work sick, and I was miserable.
Then, one evening I decided to watch a replay of one of the Thrive Moms retreats, and at the end there was the option to pray and ask Jesus into your life. I had always resisted this, given that I wasn’t sure I really fit into the Christian community. But that evening I really felt the pull to join in. So I did. And I felt an overwhelming sense of security fall over me.
I remember ending the retreat and continuing my prayer, saying to God, “okay, I have absolutely no idea what I’m supposed to be doing, I don’t know how to get out of this situation, please, show me the way.” Immediately I thought of the word, “Surrender“. I just knew, in that moment, that I had to surrender everything to God, and so I did. A week later I found out I was being made redundant from my role, and I thought, “well there’s an answer to a prayer for guidance on next steps!”
learning to surrender
I remember, at the time, it all felt so simple. Nothing seemed to sway me, as I was riding high on the experience of having felt God with me so clearly. I had experienced moments of being connected to the Divine in the past, during meditation or whilst out in nature, but I’d never received such clarity in the moment. It was like a whole new experience for me, and I was on top of the world.
It felt like nothing could bring me down. I was turned down after 3 job interviews, each time because the employer felt like I was over-experienced (I was a graduate coming from a managerial position, applying for part-time admin work). I could see their point, but I also knew that I needed to take a step back in my career. I had a 3 year old son, and I wanted to spend more time with him whilst he was still young. So I kept applying, trusting that the right job would present itself.
A few months later it did, and I began working in a charity shop. I enjoyed the work, and it gave me 4 days a week to just potter around the house and enjoy being with my family. It felt perfect and I honestly thought, “this is it”. And then I got sick.
My health began to decline rapidly until I was signed off work sick in the Summer of 2016 and never returned. I would work 3 days and feel like I had the flu the rest of the week. I would get migraines lasting for days. I would wake up and feel like I would vomit every time I moved. My hips and pelvis became so unstable I could no longer use the stairs in our home properly. I became pretty much bed-ridden, and life was hard.
Whilst this was happening my husband’s health also declined, and we both ended up out of work and reliant on a cruel benefit system. Our son was also diagnosed with Autism. And within a couple of years my extended family experienced so much grief and pain (my Nan, my Great Aunt, and my Aunt died, and two of my uncles were diagnosed with cancer). It felt like blow after blow, and I felt incredibly worthless when my own health kept me from being able to support my family in any useful way.
faith in the darkness
However, throughout all of this my faith began to blossom. At a time when I realised I could no longer rely on myself, I had to learn to rely on something greater than myself. I began reading more about Christianity, and thanks to books like Setting Jesus Free, Jesus Through Pagan Eyes, Convictions, and The Case for God, I began to realise that my own relationship with God and Jesus was not only beautiful, it was also okay.
I had long believed that I would never fit in, and my fear of being “found out” for my more liberal (and “out there”) beliefs kept me from joining fully into a faith community. And yet I desperately sought it. I remember clearly feeling God impress upon me that it was time for me to take the next step, as I sang a hymn one Sunday in church. I realised it was time for me to choose to affirm my faith, and that day I spoke to the minister about being baptised.
Since then I have grown deeper and deeper in my faith, both through being in community with others who support me and through my own desire for answers and support during my suffering. One of my favourite parts in the Bible has come to be 2 Corinthians, in which Paul writes about his own suffering:
I cannot even begin to comprehend Paul’s experience of being content with his weakness, of which he experienced far more than I ever will. And yet, this speaks to me so powerfully of the idea that when we are weak we aremade strong, at least where our faith is concerned. It is within having everything stripped away, all the things I thought that mattered most in giving me value, that I realised the true value of my worth as a human. It doesn’t lie in what I do or what I achieve, rather it is in my ability to live a good life, wherever I happen to find myself.
learning to let god in
And yet, despite all of these developments in my faith, I continued to feel distanced from God. It wasn’t so much that I didn’t have faith, for I have always had that in abundance – in my darkest moments I have raged at God, and it’s hard to be angry at something you don’t believe in! Rather, it was that I felt like I was learning to understand God on an intellectual level whilst holding Him at arms’ length.
That’s not to say that the intellectual stuff isn’t important, because it is. Exploring the wider context of any spiritual teaching to discover how it might be relevant to your life is crucial. I’m a huge advocate of Biblical Literacy, as well as Interfaith Dialogue. I find it all fascinating, and something which deepens my faith. But there’s only so much you can read and think about faith before you need to experience it too!
So over the past few weeks I’ve been purposefully asking God to help me take that step towards him, opening my heart to the experienceof Him, so that I could know Him in a deeper way. I’d become so caught up in trying to understand the nature of God that I’d lost sight of that experience I knew and recognised as the Divine. And over the course of a couple of weeks I felt myself being guided to make little changes, all of which left the gates open for God to sneak in.
so *that’s* what god is
This all led to a wonderful experience the other night, when I was laying in bed thanking God for having helped me to see changes I needed to make in my life. I knew that the clarity I was receiving could only be coming from a closer connection to God, and I was feeling gratitude for that. As I thanked Him, I felt this sudden rush of love sweeping towards me at great speed from all directions. And in that moment I knew – this was God.
“So, that’s who you are!” I said, smiling to myself. “How could I have forgotten?” I couldn’t describe the indescribable, and yet I found the words to express the experience. “You’re love, pure and simple. You’re everything. You both male and female, whilst also being neither of those things. You just are.” It all made sense, and though I felt the feeling ebbing away as I got caught up in my attempts to verbally describe the experience, I knew that a fleeting moment was all that I needed. When something is so powerful, you only need a momentary glimpse to keep you going.
I know now that I’ve been worrying too much about whether I experience God or not. The experience was beautiful, and I wish I could bottle it up and share it with everyone I know. But that’s not how it works. It isn’t necessary to “bottle it up”, because it is there for anyone to experience, at any time. God doesn’t stay away from us, it’s we who keep him at what we think is a safe distance, when we are too caught up in thinking we have it all figured out.
embracing my weakness
I also know, without a doubt, that I’m going to repeatedly do that throughout my life. I’m only human, after all, and I will often believe that I know what is best for me. Life experience has taught me very clearly that I often don’t, but I’ll still fall into the trap of believing I’m doing okay on my own. This is especially true when life is going well, but also true when things start to go wrong and I feel like I need to fix it.
So whilst I am a very long way from what Paul describes as being glad in his weakness, I can now see the depth of the truth within his message. For it is when I am brought to my knees, whether through pain or awe at the beauty of this world, that I truly open up to the experience of God.
It’s that time again, when Christmas is over and the last few days of December seem to be filled with both confusion (what day is it, again?), and reflection on another year passing by.
I find that this almost limbo stage of the year is the one where I either find a renewed sense of hope or I am filled with a sense of despair. There doesn’t seem to be an inbetween state for me, and more often than not my despair leads to overly optimistic plans as I determine to have a better year to come.
This is certainly true of where I found myself last year. I chose the word “Create” as my focus for 2018, and came up with 18 ways in which I could create more health, happiness, and success in my work. I was determined to avoid accepting how ill I was and how much I needed to give up in order to survive. I truly believed I could make things better, if only I tried harder. How wrong I was!
Looking Back at 2018
2018 has been plagued with so much stress and fear and guilt and pain. I barely left the house for the first half of it, and although things got a bit easier as the Autumn came along, it’s still been a long, hard slog. And it isn’t over yet. We still have massive financial insecurity. We still have two tribunal hearings to face at some, as yet, unknown point in 2019. And I’m still sick.
That’s not to say 2018 was all bad. We moved to a lovely bungalow in May, and I have been reflecting over the Christmas period on just how grateful I am to be here and not in our old home. Tim chose to be baptised, and we’ve both become more involved with the church through Bible Study and a few events. And Little Man has been coming on in leaps and bounds at school, thanks to better support and a greater understanding of his needs.
2018 has been a good year in many ways, but I cannot help but look back and realise that my hopes and dreams for this year do not reflect that. This time last year I felt desperate to fix things. I didn’t want to be sick (who does?) I didn’t want to be reliant on the state financially (who does?) And I certainly didn’t want to give up all the things that I felt gave me worth (who does?) Looking back at my post from this point last year, I could say 2018 was the biggest failure ever. But, I’m choosing to see it a different way…
Finding a New Perspective
Instead of seeing all I didn’t achieve as a failure, I’m trying to see it as a necessary step on my journey of self-discovery. I’m trying to see all the times I felt like I was knocked back as a swipe at the unnecessary burdens I placed upon myself to fix something that was out of my control. And I’m trying to see my brokenness as part of my healing, because only in my brokenness do I stop trying to rely on myself and turn to something greater than who I am on my own.
Essentially, I’m hoping to find peace. The word came to me as I tried to calm my mind before bed the other week. I had started to wonder what word I could choose to focus on in 2019, and it simply came to me. Peace. I tried variations on the theme, things like rest, reflection, and acceptance, but essentially it all came back down to peace. Pure and simple.
But what do I mean by peace? Do I mean an end to suffering? Well, no, not really. Suffering is, unfortunately, a part of life. So I don’t want to find a peace which is reliant on good times in my life, nor do I want to find a peace that exists despite hard times. No, what I really want to find is a peace that encompasses both, one which reminds me that it is okay to celebrate my joy and express my despair. I want to feel peace wherever I find myself, even when it’s uncomfortable.
The Difference Between Peace and Acquiescence
I want to stop trying to fix everything, and be okay with not being okay. That’s not to say that I will suddenly stop feeling passion for change where I see injustice (I’m never going to have peace with a government which cruelly inflicts pain on the most vulnerable in society, whilst protecting those with the most, for instance). But I hope to stop feeling such intense levels of fear, anger, and guilt on a personal level. I want to stop angrily watching the news unfold, with adrenaline coursing through my body, and instead learn how to channel that energy in other ways (what they may be, I do not know, but I hope to find out).
And therein lies the crux of this whole thing – I want to find peace, even when I don’t know how that will come. This isn’t an active thing, something I can force into being. I’ve tried that, and it doesn’t work. If anything, the more I strive the less peace I feel. The more I try to fix things, to find control in the uncontrollable, the more frantic and anxious and out of control I feel.
And as my body has a tendency to overreact with adrenaline (thanks EDS), this constant cycle of trying to control the uncontrollable has led to an almost permanent heightened state of awareness. The smallest things set off a rush of adrenaline these days, and it’s exhausting!
But whereas I have tried so hard to counteract that with affirmations, meditation, yogic breathing etc over the past few years, I now want to find a place of peace where it’s okay to feel out of control for a while, to ride the waves and trust that there is peace to be found within the madness. Because that’s where I’m at right now, and I can no longer pretend it is only fleeting and I’ll suddenly find a way to snap out of it.
Exploring The Power of Peace
When I was thinking about putting this post together, I was trying to find a quotation which might sum up how I feel. And this verse from Lamentations really struck me:
“I have forgotten what health and peace and happiness are” (Lamentations 3:17 Good News Bible translation).
If there was one verse in the Bible which summed up how I feel, this is it! Okay, maybe not the happiness part, I still have that in abundance. But health and peace? Those two I’ve truly forgotten the feel of. I get glimpses of them from time to time, but they are always fleeting. And I believe they are both intrinsically linked for me, too.
Without peace I cannot truly recover my health. For a long time I thought it was the other way around and that a return to health would bring peace. And it would, of course, in some ways. Better health would mean a return to work, a reduction in financial stress, and an even greater reduction in the guilt felt by the pressure put upon my family by my illness.
But recently I’ve begun to realise I’ve been looking at it the wrong way around. Any peace which comes from better circumstances isn’t truly peace at all, but rather ease at the situation. It may seem like I’m just splitting hairs here, but peace and ease are two very different things. Peace, to me at least, means knowing that at some level things are okay, even when on the surface they are far from it.
Finding The Peace Which Surpasses All Understanding
Which brings me around to faith. I’ll be honest with you and say that whilst my faith has become stronger than ever before over the past couple of years, I still struggle with many aspects of it. It’s almost like the harder life gets, the more I turn to God. But the more I turn to God, the more questions I have.
Not about God’s existence, that has never been an issue for me (in my darkest hours I’ve been the most angry with God – it’s hard to be angry with something you don’t believe in!) No, my questions are more about the nature of God and how I experience that in my everyday life.
I feel like God is just out of touch, supporting me and loving me but in a far less intimate way than I would like. I feel like I’ve been holding God at arms length, not quite willing to open up my heart fully. I’ve been stuck in an intellectual desire to understand God, rather than an emotional desire to know God. And there is a big difference between the two.
So with all of this in mind, I have decided to keep my plans for the year minimal. Instead of setting goals such as reading the Bible and doing yoga every day, I want to wake up each morning and tune in to how I’m feeling and what I need that day to find peace.
I want to open up my heart to the possibility of peace, and see what happens. And I want to do so in the knowledge that whatever happens is okay, even if I feel like I fail. Because the peace I hope to find is the, “peace which surpasses all understanding” (Philippians 4:7).
October 31st marks Halloween or Samhain (or even All Hallow’s Eve), depending upon your personal tradition. Halloween has always intrigued me, since long before I began to explore the history and culture behind it. But the more I have learnt about it, the more it has held a special place in my heart. This is particularly true of the more Pagan roots of Samhain.
Within the Wheel of the Year, Samhain falls at the third and final harvest of the year, and so marks the end of Summer. It is a time of giving thanks for the warmth and light of the Summer months, and preparation for the cold and dark days ahead as Winter draws in. And as today was one of the first days we had to de-ice the windscreen before the school run, I am painfully aware of how long the Winter can be!
(As a side note, Little Man refuses to put on his new Winter coat until December 1st, no matter how cold it gets, because for him it can’t possibly be time for that until the month when Winter officially begins comes around.)
But it’s not just the changes within the physical world that we celebrate at this turning point in the year. For many, Samhain is also about going within and reflecting on the changes in our personal lives. And at a time when the outer world is slowly dying away, we can choose to look at the things that are falling away within our own being. Whether that’s old habits, thought-patterns, or actual physical things like ending a job or moving home, there is always some change we can focus on. Because if there’s one thing we can be certain upon in this life, it’s that change will always happen.
In the past, my reflections at this time of year have often focused on the things which I wanted to let go of, or hopes for a kinder future after months of testing times. And had you asked me about this a couple of months ago, when I was completely bed-ridden by the affects of the Summer heatwave on my health issues, I’d have told you that’s where I thought I’d be right now, desperately hoping for change. But here’s the thing, I’ve spent so much of my life waiting and hoping for things to change within my outer world, that I completely underestimated just how powerful inner change could be.
This Samhain I find myself still in a battle with the DWP, back in debt and desperately trying to manage our finances whilst we’re both too sick to work, and frustrated by so much that is happening in the outer world (don’t get me started on what’s happening in the political world right now). But, I am feeling so much more content than I have done in such a long time, and that means that instead of hoping for change to my circumstances I am able to accept them and live my without the high level of fear and helplessness that have been my constant companions for the past decade.
Because, for the first time ever, I have become aware of harmful patterns of behaviour that have affected so many of my decisions and allowed me to end up in some of the most painful situations. It started with the sudden realisation, as the Summer drew to an end, that I have spent my entire life seeking approval. It seems silly to say that I hadn’t realised this before, but as much as I had known I had issues with “imposter syndrome” and never feeling “good enough”, I hadn’t made that additional step to realising that my behaviour was one of seeking approval from others. And, more importantly, seeking it from people who would never be able to give it.
I realised that there is a true beauty in the way that I view the world, and that my inability to accept the status quo had led me to trying to create change whilst simultaneously trying to “fit in” so that I gained that approval. I was torn between walking my own path and towing the line. And it was so incredibly painful that it’s no wonder I got as sick as I did. Nobody can live like that.
Coming out of that initial realisation were several further lessons. The first was that I had spent a large part of my life playing out certain roles which didn’t feel right. No wonder I’d never managed to stay in a role for more than 18 months, and had changed careers completely on so many occasions. What I wanted to do (i.e. write), felt like something that other people got to do. I honestly believed life had to be hard. Even when I chose to write a book, I didn’t have the confidence to just do it. I sought approval for it. And even though I knew how hard I had worked on it, not to mention the quality of that work, I enabled a situation where this would be questioned.
That same pattern is reflected in all areas of my life. I felt like I had simply “bluffed” my way through university, instead of realising that I am simply very good at languages. My tutors were right when they told me I wasn’t ambitious enough, and was capable of achieving more. But, instead, I felt like a fraud for receiving the results I did! The same goes for my blog. I’ve spent years feeling like I wasn’t “good enough”, because I don’t get the kind of page stats that others do. And yet, as I said before, I know I am a good writer, and that stats aren’t everything.
Basically, the past couple of months of my life have been a massive unfurling of the layers of personas I have tried to fit into throughout my life. It has reached every part of my soul, to the point where so much deconstructing has been happening that I feel like I no longer know who I am. And yet, I’m okay with that. At times it is intensely painful, and I scramble desperately to figure out who I am if I am not all of these things I always thought I was. Especially when I question whether people will like the “real me”. But mostly, it is a joyous unravelling of a tangled web which has held me captive for far too long.
And so, this Samhain, I am celebrating the falling away of these old masks I have worn. I am saying goodbye to the patterns I have allowed to rule my life, thanking them for the lessons they have given me along the way, but grateful to see them finally go. And I am welcoming the darkness of the coming months, as a time of quiet hibernation and reflection, as I allow the spark within to begin to grow in warmth and brightness. Today I am grateful for change, because it means that healing is always within our grasp!
Wow. I can’t believe that we are already in October and so far this year I have only written 10 posts! So much for my plan to write 50 posts this year. Of course, looking back at my plans made last December, I can see that I have “failed” in nearly every single one of them. And yet, from where I’m standing right now, this does not feel like a failure to me as much as a change of perspective.
At the end of last year I still believed that the DWP were going to expect me to work towards getting back to work. And there was a big part of me that knew I would never be able to do that in the more typical way. I was too sick. So I was trying to find a way to make it possible. I was trying to figure out how to make this blog profitable, once and for all.
But the truth is, I am sick. I simply do not have the energy or health to invest in creating the kind of content and promotion and brand/client networking that is required to earn consistent money from self-employment. The only work I have done for anyone other than myself this year has been for the church, and that has been limited to creating one post for the Facebook page per week, promoting the service. And even that has felt impossible some weeks.
No, working isn’t something I am capable of right now. And thankfully the DWP agreed with me on that one (although how they then went on to refuse me disability benefits, I don’t know – surely, if you’re too sick to work, you’re classed as disabled, no?) Anyway, I digress.
This year has been a hard one. I have been more ill than I have ever been (well, aside from my pregnancy from hell, but at least that had an end point!) We’ve been in a major battle with the DWP, we’ve moved home because I could no longer cope with the stairs in our house, and I have spent a large part of the year completely debilitated by pain, nausea, migraines, and dysautonomia. And as such, I’ve had an awful lot of time where all I could do was lay in a darkened room, thinking about life, and trying to figure out who I am when I am not all the things I always thought I was. Including a blogger.
You see, over the years, as I have begun to use my media experience to work with clients, I started to forget that it’s perfectly okay to just blog for the sheer joy of blogging. I forgot that a post didn’t have to take 3 hours, when you calculated the time taken to write, research links, edit for SEO purposes, find a decent stock image, create promotional images for various social media platforms, and then share on said platforms. That’s what you do for a client, or for a business site. It’s not what you do for a hobby blog. Or, at least, it can be but it doesn’t have to be.
A couple of weeks ago I almost gave up blogging. Which is sheer and utter madness, as I’ve been blogging since 2006. It’s as much a part of me as anything else. The problem was, I’d forgotten how to blog just for me. I’d forgotten when it was like to write whatever was on my mind, regardless of whether it had any value to anyone else. I’ve never been very good at writing in a diary or journal, it makes my hands hurt for one thing as I can’t form the letters as quickly as I can type them, and I grip the pen too hard and it messes with my hypermobile joints. But more than that, I actually love the creativity of sitting down and crafting a post that, whilst not necessarily aimed at others could still be read by them. It helps me form a structure to my random thoughts, and that, in turn, helps me figure out things I might never have noticed if I didn’t blog.
Plus, blogging means that I have a permanent collection of thoughts and feelings to look back on. I might misplace a journal once full, but I can’t misplace a blog. My first blog is still lurking away on the good old internet. I looked back at it the other day. And my second one. And it was so wonderful to read my little rambling thoughts. To see how much has changed (and also, how much hasn’t!)
And suddenly I realised that this is what I wanted my blog to be. I wanted it to be a collection of memories. A place where I could just come and share whatever was on my mind. I didn’t want to worry about whether it would make sense to anyone, or whether I needed to include background information for something to make sense. I just wanted to write and share. And so that’s what I’ve decided to do.
I spent most of last week trying to come up with a new tagline which really encompassed this new theme for the blog. And then suddenly, out of the blue, it came to me. Life, as it happens… Because it’s nothing more than that. It’s life, as it happens. It’s not worrying about the future. It’s not worrying about where I fit in. It’s simply life. And life is a flow of new beginnings. Every day is a new beginning. And I want to focus on that. Taking each day as it comes. And writing about whatever happens to take my fancy.
But even though I’d come up with this idea, I still needed one last little push to actually do it. And that came in the form of a wonderful group of people who are all taking part in Get Your Happy Back (GYHB). I won’t write about GYHB in this post, as I want to end this soon. But just know that it is an amazing community that once you join becomes like your family for life. They meet 4 times per year to work on, as it says on the tin, getting your happy back. Because we all get beaten down by life, don’t we? And we all need the opportunity to come together and focus on ourselves regularly, right?
I know I do. In fact, I know I need to work on this a LOT. During the group call on Saturday, my microphone wouldn’t work, so I couldn’t join in to begin with. We all had a laugh about it, but it was very poignant for me. I have issues with expressing myself. You wouldn’t think that, would you, really? I mean, I’m a linguist and a writer – words are what I do. But as my dear friend, Rachel (who is an amazing therapist, by the way), mentioned to me today, there is a big difference between my ability to analyse what I think is going on and what I think people want to hear, and actually expressing what I need to express.
I’m so terrified of what lies beneath all the different personas, that I don’t even really know who I am anymore. And that’s scary. Because if I dig deep and I find out I’m not who I have portrayed myself to be for all these years, will people like the real me? Will I even like the real me? Scary stuff, huh?
Which is why she has challenged me to sit in front of a mirror and tell my story. From the very beginning (birth). In chapters. Because God knows I have a lot of layers to work through! And, to be quite honest with you, this blog post is a little bit of a delaying tactic, as I’m putting off getting started. But that means that this is really important, and so I’m going to be brave and I’m going to do it. I’ve got the house to myself until 5, when I have to go to an appointment to remove my Mirena (more on this at a later date – it’s a big, scary, but empowering change!)
So, changes are afoot. I am going to try to stop worrying about who I am and actually see if I can simply find her underneath all of these layers. I’m going to try and tell myself my story. And I’m going to use this blog to document what I call my “Sacred Healing Journey” over on instagram. Because this is life, as it happens…
I wanted to take a few moments today to reflect on the changes that have been happening in my life over the past few years. I don’t mean the external changes, although there have been plenty of those! I mean the internal changes that have helped me to look at my life from a whole new perspective, leading me to redefine my own sense of self-worth.
It feels almost impossible to know where to begin with this, because the way I view my life has changed in so many ways over the past few years. But I think the most logical place to start is in my teen years, when I first began to develop a warped sense of self-worth
Self-Worth from a High-Achiever’s Perspective
I’ve spent the vast majority of my life believing that my value came from the things I did, rather than simply who I am. As a naturally high-achiever at school, it seemed almost inevitable that this would happen. I got consistently good grades (often the highest in the class), and then I went on to study at one of the UK’s top universities. By the time I graduated, aged 22, my entire life had been about academic achievement. And yet, despite this, I never felt “good enough”.
It doesn’t make much sense, does it? I achieved so much as a teenager and in my early twenties, academically at least. You’d think that this would provide a solid foundation for confidence in my skills and abilities, but in reality the exact opposite was my experience.
I actually really struggled with self-worth a lot whilst at university, and when my dad asked me if I was finally proud of myself on my graduation day I honestly said that I wasn’t. I felt like I had completely bluffed my way through, and was a fraud.
And the thought of moving into employment terrified me, because I couldn’t ever see myself feeling confident enough to cope in the workplace. You see, for me, my self-worth had become so intrinsically linked with my achievements, I felt huge amounts of anxiety and fear over maintaining that high level of accomplishment. Anything less than “the best” felt like failure to me.
the ongoing impact of low self-worth
As a result, I did everything to avoid going into roles that might really challenge me. Don’t get me wrong, I loved my time working in childcare, retail, and student support. I’m a sociable person, and working in roles that involved meeting lots of people was lovely. But I never stayed anywhere long enough to advance up the career ladder. It didn’t matter that my employers could see my potential, giving me greater responsibility than my role actually required, I couldn’t see my worth.
And for most of my 20s I felt like I was just biding my time until I got married and had kids. The one thing I had always been sure about in my life was that I adored children and couldn’t wait to be a mother. I convinced myself that I wasn’t career driven or ambitious, I was just holding down a job until my real role in life would begin. So I was overjoyed when I fell pregnant in 2011, just a few months after our wedding. But my joy was short-lived.
when life throws you a curveball, it’s easy to doubt yourself
As you may know, I suffered from Hyperemesis Gravidarum during my pregnancy. It was, quite honestly, sheer hell. I knew, without a doubt, that I couldn’t possibly face another pregnancy, because my first one almost broke me. But so did the decision never to have another child. I have never been so angry with God than I was during that time.
I remember crying through angry tears, asking why I had been made so maternally driven if I were only ever to be allowed one child. The one thing I had always felt so sure about, that I would devote years of my life to raising a young family, was suddenly snatched from me. And it broke my heart. I absolutely adored being a mother, it was everything I had ever dreamed of. But in my grief and confusion, my lack of self-worth started to seep into this area of my life too.
Any parent will tell you that having a baby is exhausting beyond belief. It feels relentless and scary, to be solely responsible for the welfare of this tiny being. And that’s before you even begin to look at other things that can make it even harder. We all have things we struggle with when we become parents. For me it was the combination of trying to recover from the trauma of my pregnancy whilst: caring for a baby who never slept; trying to deal with terrible issues with oversupply (which felt like my body was letting me down yet again); and supporting a husband who was beginning to suffer from depression. So, it’s not all that surprising that my thought process turned to beating myself up.
the destructive power of doubting yourself
I knew and trusted myself enough to know that I needed help to avoid spiralling out of control into a pit of despair, so I asked my doctor at my 6 week post-natal check for a referral for mental health support. I ended up having 7 months of CBT, and honestly I credit that with keeping my head above the water. But even with that, I still lacked the self-worth to follow my instincts and allow myself time to heal and process what had happened.
My inner chatter began to say things like, “why would you even believe you deserve to have more children when you’re already struggling with one?” and “what gives you the right to stay home and enjoy being with your child, when your husband is struggling so much at work?” I began to question everything, and whilst I look back on that first year with happy memories of sitting for hours just cherishing being home with my boy, I can see how I ended up taking the next steps that I did. Because I didn’t believe I deserved to enjoy being a stay-at-home-mum, nor did I feel like I was doing enough in my life. I felt like I needed to do more.
In a series of what I can now see were misguided, if well-intentioned, choices, I found myself pushed beyond my limit and close to a complete breakdown by the end of 2014. I returned to work when my son was just 15 months old, far sooner than I ever thought I would, and whilst I enjoyed the work immensely I also missed being with him more than I can say. At one point I ended up working two separate part-time jobs, and when one offered full-time hours I took it as it seemed easier than balancing two roles. But it was a role in which I felt incredibly isolated and which, due to the nature of the work tapping into my own personal trauma, almost broke me.
To any outside observer, 2014 should have been a high point in my career. My book was published and hit the top 10 for books in its genre on Amazon. I was interviewed live on national television. And I was working in a role that enabled me to support women all around the country. But I was falling apart inside in ways I had never, ever experienced before. And it was all because I hadn’t trusted myself enough to follow my instincts when they had repeatedly said, “this isn’t what you’re meant to be doing”.
sometimes the best lessons in life are the hardest to learn (because we resist them so much)
Near the end of 2014 I wrote a post called Warrior, because I felt like fighting was what I needed to do. But a few weeks later, in a moment of sheer desperation, I prayed to God in a way I’d never done before. I said, “I’ve tried everything, and I don’t know what I need to do any more. Please, you have to show me the way. It’s your turn now!” And I truly meant it.
I had spent so much time trying to figure out what I was supposed to do with my life, to give my life meaning, if I wasn’t meant to spend this part of my life raising babies. And I had found a purpose, no doubt about that. I had thrown myself wholeheartedly into campaigning for better awareness and care of Hyperemesis Gravidarum, so that one day no woman would have to make the same heart-wrenching choice never to have another baby as I had. But that wasn’t my purpose. That wasn’t what I was here for, and I was finally beginning to accept that.
But I was still very much caught up in the movement in a way that was deeply damaging for me, as well as for those I worked with. And I couldn’t see a way out. But, do you know what? Within moments of passing control over to God, I received the most overwhelming feeling of peace. It just washed right over me, and I heard the word, “Surrender“. And I knew that was what I was being asked to do. I wasn’t being asked to fight for (or against) anything, I simply had to surrender into it. And boy, did I surrender!
answered prayers often take us to places we could never have imagined
Within weeks of my prayer, I had been made redundant; been turned down at three separate interviews for being “over qualified”; and battled with a letting agency after our house move fell through unexpectedly. And yet, I felt nothing but quiet assurance that all would be well. I even began to think about trying to go it alone, finally finding the courage to look at my blog as a business opportunity, a chance to do what I was best at (communicate), rather than simply a hobby.
But in the end, I still didn’t trust myself enough to do that. I still felt as if that was something other people got to do, and it was silly of me to even contemplate the idea. Which is crazy, because it was around this time that one of my blog posts was chosen as one of the Blogger Keynotes at a blogging conference, and I got to read it in front of a room full of bloggers in June 2015. But still, I felt as if I wasn’t “good enough”.
So I eventually ended up in a part-time role, which I loved, but which was physically exhausting. My body had never really recovered from my pregnancy, all the symptoms connected to my EDS had increased, and my fatigue was at an all time high. I began to spend 3 days a week working, and the other 4 feeling like I had the flu. I could barely move, and began to get sick regularly on top. At the time I was gutted. I had thought I had finally said goodbye to the stress that had taken such a toll on my body.
But it was like my body was doing everything it could to make it impossible for me to continue ignoring the fact that I still wasn’t listening to my intuition. Every time I tried to find a purpose, things seemed to get immeasurably harder. I spent most of 2016 seeing multiple specialists to try and figure out what was wrong with me, and in the end I was given a diagnosis of Fibromyalgia.
life will keep sending you the same lesson until you get it
Even with this diagnosis, I still refused to stop and look at what I really needed to learn – self-worth. I left employment after 6 months on sick leave, but set myself up as a freelance VA and web support. I wouldn’t have dared dream of doing that until my sister-in-law asked me to do some work for her and suggested my skill-set was actually really valuable to other businesses. But with enough encouragement from her, along with two coaches I was lucky enough to work with (Pippa from Story of Mum, and Michelle Reeves), I took the plunge and set up Shortman Media.
My aim for the business was to build it up enough so that I could train Tim in the work I did, so that he could start working from home too. We knew his days in regular employment were numbered, and really wanted to avoid the UK Benefits System, which we knew was notoriously bad for supporting people like us. And for a while, it seemed as if this would work. During 2017 I managed to work with 6 different clients, and gained two amazing testimonials that boosted my confidence a bit.
But it wasn’t to last. By the end of 2017 I was working the absolute minimum hours (less than 10 per month), and even then I was struggling. And yet, despite knowing my health was in a rapid decline, I still had the most ridiculously ambitious plans for 2018.
when you “get it”, you really get it
I was still trying to “fix” my life, to find some purpose within the madness, so I didn’t have to face the fact that I needed help. So my body continued to send me messages I could not possibly ignore. I began suffering with migraines that lasted for 2 weeks every single month. I caught every virus going. I became practically housebound, barely leaving my house for the first quarter of 2018. I was literally reliant on others for pretty much everything.
And it was hard. Oh, boy, was it hard. I fought with feelings of guilt, and failure, as it just seemed to be one battle after another. The last 6 months of my life have felt like the darkest pit. And yet, once again, as I began to hit rock bottom I found my faith growing. I clung on to the hope that we would, one day, find our way out of this mess. And I began to realise that the only thing I could really do was focus on looking after myself.
I realised I couldn’t change what was happening to us externally, but I could change how I felt about it internally. I began trying to do things that eased my soul, and chose to trust that the Universe had my back. But it was hard. For instance, there were 3 weeks in which we were unable to bid on any council properties. This was then followed by several weeks when the only option were flats, which I knew without a doubt would be a terrible move for us.
There was one week when I really began to doubt myself and wonder if we should bid on a flat, just to get out of the house that had become almost prison-like to me. But I held faith, and lo and behold the very next week our dream bungalow became available. And even though it felt too risky to even dream we might get it, I just knew it was ours and felt like I was simply waiting for confirmation of what I already knew. And a week later, it really was ours!
letting go of the ego to find a true sense of self-worth
Of course, moving when you’re as ill as we are is far from easy. I had to swallow my pride over and over again, asking publicly for help with everything from decorating to doing tip runs. But do you know what I learned from this? I learned that people were more than happy to help, because they valued me for who I am, rather than what I could do. And it was a real revelation!
The more I asked, the more I received, and I began to see how truly blessed I am. In the moments when I felt like the biggest failure, I reached out for help instead of trying to hide my shame, and received so much support it was incredible. And it reminded me that, all along, I’ve been supported, I just didn’t want to believe it. Because I didn’t feel worthy. I felt like I hadn’t earned it.
But all that was changing. When I felt like I truly had nothing left to lose, I realised I had gained so much more than I could ever have imagined. And slowly, but surely, I began to redefine self-worth. I began to truly understand what it meant to honour yourself as worthy, just as you are. To “stop playing small” and fully embrace the beauty of who you are. I began to accept what I had written a few years ago, about us all being made to shine. And I began to trust myself again (or maybe, even, for the first time ever!)
when you trust yourself, you begin to find your way
This all brings me to the past few weeks, in which a huge amount of inner healing work has taken place. It all started with Rebecca Campbell’s new Work Your Light Oracle Deck, which I kept seeing on instagram.
I have several oracle decks already, and used to use them quite a lot. But in recent years I just haven’t felt connected to them at all. So it surprised me to be so attracted to this new deck, especially as the artwork was so different to what I would usually be drawn towards. After seeing it multiple times, and feeling a gut reaction to it every single time, I decided to trust my instinct and order it. And, wow, was that the best decision I have made in a very long time!
The deck itself is so incredibly beautiful, and the emphasis on the idea that You Are The Oracle really spoke to me. You can read about my first experience with the deck here, which in and of itself is incredible. I’d never shared anything quite so “New Age-y” so publicly before, and it felt really scary to open up that part of my life and express how much it means to me, especially as someone who also describes herself as a Progressive Christian.
Don’t get me wrong, I’ve touched on this in the past, but I’ve never authentically shared how it fits into my own personal life, nor how important it is to me. And that felt like a terrifying thing to do. But it also felt so right. As I wrote in my instagram post, “I’m finding the courage to share all the aspects of my faith and spirituality. Because I do connect with both “New Age Spirituality” and Progressive Christianity. I truly believe they complement each other and do not have to be an “either, or” option when it comes to faith. This is my path, and I don’t want to hide it any more.”
finding the worth in your own, unique story
Thankfully, several people liked and commented on my post, giving me the added reassurance that it was safe to share my story in this way. And it opened up so many doors for me. Because, for the first time ever, I began to see the worth in my story and the power in sharing it openly.
I’ve been blogging since 2006, and right from the beginning I wanted to write about faith and spirituality and how beautiful it can be when it is truly inclusive. But as a 22 year old, I felt like I had no right to be writing about such things – what did I know about life?
So I began writing about things that seemed “blog-worthy”, based on the types of topics other bloggers were writing about. Things like homemaking, crafts, and parenting. But the truth is, that wasn’t what I needed to write about. I needed to write about faith. And I needed to write about it in the context of life itself.
By that, I mean, I didn’t need to have it all figured out, I simply needed to write authentically as life happened. Because there is power in being open and raw and vulnerable, especially in a world that is so hell-bent on aiming for perfection. My beauty lies in the unfiltered parts of my life. And my worth is based on who I am, not who the world wants me to be.
changing “only” to “Amazing”
And so, I began to simply write what was on my mind, rather than worrying about whether it was share-worthy. And I began to trust that it would find those who needed to read it. Because a few weeks ago, in what I can only describe as an inspired moment of clarity, I suddenly realised I had been looking at my blogging journey all wrong.
For many years, I’ve felt like a failure for blogging for so many years and still only having a fraction of the reach that other bloggers have. I felt bad that I get “only” 2,000 visits to my blog per month, that “only” 147 people follow me on Facebook, and that “only” 660 people follow me on instagram. But in that moment of clarity, I changed my “only” to “amazing”.
I realised that it is truly amazing that my blog is viewed 2,000 times per month, despite me doing pretty much no social media promotion whatsoever. And it is beyond amazing that people not only follow me on Facebook and instagram, but they also encourage and connect with me whenever I post, despite my posts being irregular and likely to be lost in such a fast-paced environment.
just share your story, that’s all that matters
I couldn’t possibly reach as many as I do people without my blog or social media. So it is a true blessing to be able to share my story in this way. And I’m beginning to see the true value in sharing it, no matter how many people read it.
Funnily enough, the Universe was determined to help me remember this, as I suddenly came across a video series by Gabby Bernstein, in which she encourages you to simply get out there and share your story. In her first video she even mentions someone who arranged a public talk and only one person turned up. And yet, after her talk that one person thanked her for such an incredible experience. If we simply share our story, the rest falls into place.
And so that’s what I’m going to do. I’m going to share my story. I’m not going to worry about how long this post is, or whether it’s “of value” to anyone else. It’s of huge value to me, and reminds me that I’ve been sharing my story all along. It’s just, now I’m doing so with intention. Now I’m sharing it because I understand that it has value simply because it is true and authentic. And because of that, it is also healing.
How do you know your worth? What is it, about yourself, that you feel makes you worthy? Is it the things you say or do? Maybe it’s your achievements and successes? What about your career? Or your relationships to others? What do you hold on to tightly, whenever you feel doubt begin to creep in?
For me, it is my goals and achievements. It is the things that I have done which I feel give me worth. Which is a problem for me right now, because at the moment I am too sick to do anything. I am barely getting by with the day-to-day tasks, doing the odd bit of work here and there and just about surviving, but certainly not achieving any real goals. And that is terrifying, because without those who am I?
a change in perception
You may remember that I shared 18 things I wanted to achieve this year recently. When I shared them with a close friend, I was reminded that these are ambitious goals for someone much healthier than I am right now. And it made me realise that I am struggling so hard with redefining my worth now that I am so sick…
And it’s not just the achievements that bother me, it’s the interactions with others and my perceived role in relationships that bothers me too. How can I be a good mother, daughter, sister, and friend if I’m too sick to do anything beyond the odd message here and there and a call out for help when I need it. What am I bringing to those relationships right now? Where is my worth?
Have you ever felt like that? Have you ever felt completely worthless, like you simply cannot do or be enough, just as you are? Have you ever carried feelings of guilt and fear over where you are and who you are becoming? Do you recognise what I’m trying to say?
If so, I hope that you’ll find the video below helpful. It is a poem I wrote on one of my darkest days recently, which also turned out to be one of the biggest turning points of my life so far. It starts with a feeling of helplessness, and ends with a message of love, which is exactly the journey I went on whilst writing it.
How did the poem make you feel? Can you relate to it? Did your mind fight the message at the end, not wanting you to believe how worthy you truly are just as you are? I’ve certainly been there and experienced that, which is why I love the powerful healing that I experience when I create something like this.
the healing power of creativity
For me, letting the creative juices flow enables me to get out of my own head and let the wisdom of the Universe speak through me. It inspires me, gives me hope, and reminds me that there is so much worth in the most simple of actions. By taking a moment to be quiet, allowing myself to be inspired, and then letting the poem work its way out into the world, I facilitated a shift in my whole perception.
Of course, as soon as I had done it I began to doubt myself again. I worried that the poem would make no sense to anyone else. Not that it would matter that much if it only made sense to me… except my experience whilst writing has always been that this is where my true worth lies, this is what I can bring to the world. So I wanted it to mean something to others.
So I swallowed my fears and shared it with a few close friends. And the response was more than I could ever have hoped for. Seeing others respond to my words not only increased my confidence in my writing, but also reminded me that we all hold these fears within us. I’m not alone in feeling this way, and so sharing my heart with you all is just as valuable as anything else.
I wanted to share it with you straight away, of course. But life had different plans, and I’ve been too sick to do it until now. But that’s okay because I’m learning patience as well as everything else. My worth is not in producing content constantly, rather it is in allowing an idea to flow and grow until it is ready to be shared, no matter how long that takes. There truly is worth in every step… even when that step might be resting in bed!
You’ve probably noticed it’s been rather quiet here at The Patch lately, and there’s a reason for that. I’ve been really struggling health-wise, and in an attempt to keep going through everything that has been going on, I decided to focus on other areas such as Shortman Media and Spirit Kid Network. However I really, really missed writing here and so I am finally making the time and space to come back to this wonderful little blog of mine.
Last week we headed down to Glastonbury (my favourite place on earth) for an impromptu holiday, and for the first time in so very long, I knew what I needed to let go of in order to begin creating the life I want. The things I want have changed so much over the past few years, and it all started when I went from wanting to have a big family to trying to force my grief over my pregnancy (and loss of more children) into something positive. I poured all I had out into campaigning for others and trying to make the most of a situation I found so incredibly challenging, and in doing so I failed to recognise what I needed most – to embrace all the parts of who I am.
Years ago I wrote constantly. I’d scribble things on napkins in cafes as inspiration hit, I’d spend hours reading and writing about the things I found most exciting or intriguing, and my whole life revolved around communicating (I was a language student, after all). And for a while there I completely lost that side of myself. I got caught up in trying to “be a good blogger”, following advice from others rather than simply writing from the heart. And I did this because I felt I had lost who I was, and so I couldn’t identify myself without turning to other people’s interpretations of what it meant to write a blog.
And in my life as a whole the same thing happened, as I tried to figure out what it meant to be a mother, a successful employee (and then freelancer), a wife, a friend… I didn’t allow myself to be sick, even when I was sick, because I didn’t think that was what I was meant to be. I tried to keep up with people far healthier than I am, hoping to somehow redeem myself and my worth through being something other than who I am. And I never allowed myself to feel the grief and the pain and the anger over where I found myself, because I didn’t want to accept them as a part of who I am.
And all of that led to an intense loss of self, a situation where I forgot that as humans we are beautiful, multi-faceted beings, who sometimes fall so very low and need to stay in that darkness for a while before climbing back out into the light. By trying to lighten my situation constantly, I ignored a whole part of my soul, and ended up splitting myself in so many different directions I had no idea where my centre lay anymore. And the more I did this, the harder I fought to keep up the charade.
My time in Glastonbury changed that, however. I had some wonderful Soul Healing at the Goddess House, where a wonderful lady called Mandi Thorne explained how she could feel my resistance to let go. I have been clinging on to a false sense of control for so long that I am terrified of letting go and allowing all the emotions to bubble up to the surface. They scare me. And that needs to change.
So I’m taking tiny steps towards embracing the whole of who I am, rather than trying to be who I think I should be. And a large part of this involves closing down my other site (Spirit Kid Network) and bringing the spiritual resources I was trying to create over there to The Family Patch. When I set up SKN I did so because I didn’t think the resources fit here. And that was a mistake, because they are a huge part of who I am.
You only have to look at my posts over the past year to see I have written far more about my faith here at The Family Patch than I ever did over on my spiritual site. And that is because I pigeon-holed that site too, making myself believe that if it was about me and not a resource for kids it didn’t really belong there. I ended up losing my voice completely by splitting the parts of who I am so strictly.
So over the next couple of weeks I’m going to be rebranding The Family Patch to reflect this new integration of all that I am. No longer will I worry about whether it’s a craft blog or a health blog or a spiritual blog or whatever else I think it should be in order to fit in. It is a beautiful, complex, and disorganised place where I can share my heart as I journey towards better health and healing through honouring all that I am. And I am so delighted to be moving in this direction.
Today is quite a poignant one for me. Just a few days ago I found out that the Rheumatologist had diagnosed me with Fibromyalgia/CFS, after many months of tests and appointments with a wide variety of specialists to try and figure out why I am so ill. So when I discovered that 12th May is an Awareness Day for both of these conditions, I knew I had to come on here and write a post about it.
Since 1992, 12th May has been designated as “International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)”, which includes Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Fibromyalgia (FM). This means that 12th May 2017 is actually the 25th Anniversary of this Awareness Day, and I have to say that I’m grateful for that, because it means that my diagnosis this year comes with a lot more understanding than the diagnosis my mum received 20 years ago.
You see, the diagnosis may be new to me, but I grew up knowing just enough about ME/CFS to have an appreciation of the impact it can have on the lives of those who suffer from it, and their families. I remember my mum, who was a childminder at the time of her diagnosis, giving up work as it was just too much. I also remember accompanying my dad on the weekly grocery shop to save my mum having to deal with the supermarket for a while. And in the years since, I have watched as more and more health issues have complicated her life.
And yet, despite seeing a close member of my family dealing with ME, and managing other chronic illnesses of my own (namely Hypermobility and Endometriosis), it wasn’t until I began to suffer from the exact same symptoms myself that I truly realised just how debilitating these conditions can be. It’s hard to describe just what it feels like, and my understanding is that it is slightly different for everybody, but I want to try and share a little bit about what it feels like to me and the impact it has had on my life already.
It’s been quite challenging for me to pinpoint the symptoms, not because they aren’t severe but because they are similar to symptoms I have experienced in the past due to other conditions. However, the following have all become much worse than they have ever been, or are completely new to me, and it is these which I find the most distressing and debilitating:
Extreme fatigue and exhaustion – since developing this symptom I am aware that I completely underestimated exactly how bad it was for people with ME/CFS (sorry mum!) This goes far beyond the feeling of exhaustion you associate with having overexerted yourself or the fatigue that comes from lack of sleep. This is an overwhelming and all-encompassing lethargy that fills your entire body.
When it hits me (and it often hits me without warning!) I find myself completely reliant on those around me to pick up the pieces and allow me to drop in bed. Even sitting in bed feels like it takes too much effort, and it is so difficult to concentrate I find it hard to read or watch TV or even communicate some days. And let’s not talk about the days I skip lunch because I simply haven’t got the energy to make myself something to eat (yes, it really can be that bad!)
Brain fog – following on from the extreme fatigue, sometimes I simply cannot clear my head, and the simplest things escape me. I forget to take my medication, and then wonder why I am in pain or my stomach is so upset. The only thing I can liken it to is the effect of severe sleep deprivation during the early days of parenthood, when you’re so exhausted that everything seems to take so much more concentration to make sure you do it right.
You could ask me a question and I might not answer for several minutes, because it takes that long for me to process what you’ve asked and then formulate an answer. And there’s absolutely no point in asking me to make a decision on days when the brain fog hits, just don’t even try.
Joint and muscle pain – this has been quite a tough one for me to connect to the Fibromyalgia/CFS to be honest, because I simply assumed the increased pain was due to my Hypermobility. But I recently realised that it goes beyond that. Sure, my hips kept trying to pop out for a while, but several months with the physio helped to relieve that a lot. But despite increased core strength exercises, I still suffer from daily pain in my hips, pelvis, knees, ankles, back, neck… not usually all at once, but sometimes it happens.
Today is particularly bad – my ribs feel bruised; my pelvis is sore; my knees, ankles, wrists, and elbows all ache; and my forearms hurt where they are resting on the edge of the table as I type… just a small amount of pressure which would never have bothered me in the past.
Migraines, dizziness, and vertigo – again, these are things I have experienced in the past at one time or another, but this past year they have increased in both severity and frequency. Just before Christmas last year I had a six day migraine, and in recent months I have discovered that I sometimes have all the symptoms of a migraine (sensitivity to stimuli like light and sound, an out-of-body-feeling, etc) without the pounding headache, which I have never experienced before and which is very disconcerting!
Some nights I cannot lay down in bed, despite being exhausted, because I’m just too dizzy. Other times, it comes on when I am looking at a computer monitor, mobile phone screen, or even after eating my evening meal. When it happens I simply have no option but to rest in a darkened room as soon as possible until it passes, which can sometimes be several hours.
Nausea – okay, so this one I have suffered from to varying degrees for years due to both IBS and Endometriosis. But never before have I suffered from nausea so frequently, just because I am tired or in pain. In fact it took me quite some time to make the connection between my pain and the nausea, and it was only because I happened to take some painkillers one day and realised my nausea practically disappeared as soon as the paracetamol kicked in. I often underestimate the effect that the pain has on me, and this really taught me just how much my body is struggling to deal with everything right now.
Inability to regulate temperature – one of the first signs I had that something was really wrong, was the fact that I would wear 6 layers to work (a long sleeved thermal vest, a second vest, a t-shirt, 2 cardigans, and a fleece jacket) and I would still be so cold I was physically in pain! Then, when the summer came around I could barely cope with the heat – whilst everyone else was sweating through the heatwave, my body didn’t seem to be doing anything to cool me down, and I relied heavily on the fan to keep me as comfortable as possible.
the impact this has on my life
Anxiety – this is a huge one for me, because the unpredictability of my illness means that I find myself getting anxious over things which would previously have excited me. For instance, I had a major panic attack last summer, because Little Man and I were due to go to London for the Cosmic Kids Fan Event at YouTube. I lay in bed, heart racing, cold sweat pouring off me, as I thought about getting us both down to London, across the city using the Tube, and to where we needed to be on time. I have travelled so much over the years with public transport and it has never made me panic like that before, but a part of me was suddenly aware of how much I was struggling and how I couldn’t guarantee I would be well enough to cope with such a busy day, and that terrified me. We managed it in the end and had a great day, but it took so much out of me.
That same panic hits me regularly as I realise this same unpredictability of my illness (and the severity of debility when it is at its worse) is preventing me from working and providing stability for my family. It’s very difficult to talk yourself out of panic when you realise your anxiety has some logic to it.
Unemployment (and financial instability) – again, this one is huge. My part-time employment ended in January this year, after 6 months of continuous sick leave. At that point Fibromyalgia and CFS had both been mentioned but I hadn’t been officially diagnosed. Even so, it was clear I wouldn’t be well enough to continue working in my previous employment.
I had hoped to make things work as a freelance online media specialist, but unfortunately even a few hours a week has been proving too difficult to manage. I still do very ad hoc work for a couple of clients, but this is 2-3 hours per week total, and nowhere near enough to provide for my family. Just this week I have had to make multiple claims for increased financial support, and there is nothing worse than feeling that a) you cannot provide for yourself and b) even when you try claiming support, you’re not even eligible for half of it anyway. Needless to say, this is a huge impact my illness has on both me and my family.
Reduced activity with the family and friends – this last one tears me apart. When we first moved to our current home, I did lots of different things with Little Man around the city over the summer holidays. Last year the summer holidays were spent mostly with me resting in bed and him watching YouTube on his tab next to me. This year I expect it will be very similar – I simply do not have the energy to do things with him, and that breaks my heart.
Equally, I find I cannot plan days out with friends or even a catch up over coffee, as I am just too ill to manage it. Last week I had to cancel meeting two friends for coffee due to a stomach bug, and the resulting time required to recover from that meant I had to cancel a lunch trip with my Grandma and others from church this week too. Just a couple of months ago I also had to cancel singing in the choir for the church panto, as I was simply too sick to cope with multiple performances.
Most nights you can find me resting in bed, watching Netflix or reading a book, because I simply do not have the energy to stay up any longer… I go to bed before my 5 year old! And as much as he likes simply being with me, sometimes even trying to keep up with his conversation is hard work when I am so tired.
but my story is just one of many…
As you can see, Fibromyalgia/CFS has had a massive impact on my life, and affects my family too. And my story is far from alone. I have been truly blessed over the past year to have found a wonderfully supportive community over on instagram, with people dealing with a wide variety of chronic health conditions, including ME/CFS and Fibromyalgia. I wish I could list them all on here for you, but that really would be a mammoth task… instead I am going to list just a few to help get you started, if you’re interested in learning more.
I was unsure what to call this post, because there are so many things that are heavy on my heart right now. But I think the title I’ve chosen sums it up rather well. For such a long time I have been desperately fighting the uncertainty over my future, the grief I feel over things beyond my grasp, and the vulnerability that comes with accepting that I am sick and that I can no longer give until I first learn to receive. Resisting all of that has taken its toll, and it’s time I learned to embrace it instead.
I hasten to add that this isn’t a new concept to me – I’ve known I’ve needed to do this for years, but knowing something and actually accepting it are two very different things. Even as my health has deteriorated over the past few years, I have refused to acknowledge just how ill I have become, because doing so felt like giving up. Even up until the very beginning of this year, I was determined to make it all work somehow – I’d go freelance and work from home, I’d schedule in time each day to focus on my well-being, I’d cook healthy meals from scratch, and I’d find a way to do all of this and continue to run two blogs, be active in social media groups, and get more involved in my local community too.
How hard could it really be? I thought. After all, I wasn’t quite as sick as I had been when first signed off work last summer. Several months of trying to rest as much as possible had made a difference, but I needed to get going again to help make ends meet financially, and I didn’t want to be held back by my illness anyway. Unfortunately, with all the determination in the world, there are some things you just cannot change. For me, this is my health. I’m not talking about small changes like eating healthier and getting exercise – of course those make a difference. What I mean is that, if you are chronically ill, sometimes you just have to accept your limitations and find a way to work within them. But that it something I am terrible at!
The past 3 months have practically broken me: I’ve been working with several clients on some pretty big projects; I’ve seen my family struggle with my Nan’s final weeks on this earth; I’ve had multiple conversations with Little Man’s teachers as he has been struggling to settle into the school environment; and I have tried to keep my home running as smoothly as possible throughout all this change, all whilst suffering from multiple viruses on top of my general ill health. And yet despite all of that happening, I still continued to try and do more…
When I look at it like this, I realise how unbalanced my thinking really is. And I understand why I live with this constant knot of anxiety at the pit of my stomach, never knowing when a full-blown panic attack may occur. Because I haven’t given myself time to breathe, time to sit in the uncertainty of my life and grieve for all that I had once wished for but which can no longer be. And I certainly haven’t allowed myself to be vulnerable, because that fills me with absolute dread – what happens if I do that and it all falls apart?
So, of course, life enabled me to experience that which I feared the most, didn’t it? This week I was faced with “saying no and letting go” to so many things, things that I not only felt I ought to do but which I really wanted to do too. I had filled my week with fun activities – a trip to the Cathedral with a friend, and singing in the choir for the Church Panto. But a stomach bug stopped me in my tracks and made me realise I simply cannot do it anymore, I cannot continue to pretend I am coping when really I’m so close to breaking.
I toddled off to the Cathedral with my friend, feeling worse for wear but determined to make it through the week, and ended up spending half of the time in the toilets! I then sat quietly in a little chapel, knowing that I had to cancel my plans but so terrified of letting people down. Thankfully my friend was a wonderful comfort that day, encouraging me to allow myself to be vulnerable for once and not worry so much about other people, and I cancelled attending Bible Study that afternoon and Panto Rehearsal/Performances for the rest of the week. I cried so much when doing it, partly because I hated to let others down, but mostly because of what this signified. In cancelling these plans I was truly beginning to acknowledge how ill I truly am right now.
Which led me to thinking about all the areas in my life that drain the energy I simply do not have to spare. Many of them are things I love and am so passionate about, and it breaks my heart completely to have to put them aside right now. But the alternative is continuing until I break, and having been there just a year ago (and again a couple of years before that) I am desperate not to return to that place any more. This time I want to truly embrace the uncertainty of it all, to grieve for all the things I wish were different, and to allow myself to be vulnerable in this space. No more “putting on a brave face” and pretending all is well when it’s not. Wow, that is hard for me to write… and even harder to live!
Which brings me to the point of this blog post, really. I’ve had a good, long (and extremely hard) look at all the things that I have going on in my life and decided that I have to cut back on so much in order to give myself the time, space, and energy to truly begin this healing work. And here’s what I’ve decided:
1. I shall make time every single day to seek out the love of God which I know is helping me through all of this. This will take various forms – sometimes it may be reading a book, sometimes it may be walking in the park, and sometimes it may be sitting in silence. Whatever form it takes, I want it to become a prominent part of my day, helping me to truly embrace the uncertainty of it all, trusting that I don’t have to have it all figured out!
2. Leading on from this, I shall use The Family Patch as my place to simply write what feels important to me, rather than trying to produce “useful” content. And right now that is likely to be a lot about faith. I know that this isn’t everyone’s cup of tea, so please do feel free to unsubscribe or mute updates from me if you don’t want to read this kind of content. But for those of you who are interested, please do share with me your own thoughts and experiences in the comments, as I’d love to hear from you.
3. Even though it is faith-based, I am taking a break from Spirit Kid Network. I simply cannot devote the time needed right now to build up the kind of content it deserves. There is still content to be found over there from last year, plus my free chakra guide for kids, so I’m not shutting it down completely. I simply need to release the pressure of producing new content on a regular basis on both of my blogs.
4. I am also going to limit my use of social media, particularly Facebook Groups. To be fair I haven’t been using Twitter, Instagram, or Pinterest that much lately anyway. But a large chunk of my time gets caught up in Facebook Groups. Most of these are relevant to the work I do at Shortman Media, so it feels a bit risky to step back from some of them, but I really do need to limit my time spent helping others – every short answer I give soon adds up over the length of a week.
5. That being said, I do want to spend a bit more time in The Faith Space, which is a Facebook Group I set up for those of us who wanted to discuss faith in an open and religiously diverse way. I’m not promising anything in terms of how much I’ll actually do on there, but if you’d like to join us please do request to join the group over on Facebook.
All of this means that the limited time and energy I have outside of what I have to do (freelance work, housework, family life etc) is less likely to be eaten up by multiple different things and more likely to contribute to my overall well-being, by focusing on what is most important to me right now. I am a giver by nature – I want to be there for everyone, encouraging and supporting them, no matter what. But that takes a lot of time and effort, which I simply do not have right now.
So, that’s where I am right now – embracing uncertainty (and trusting in God’s plan for me), grief for all the things I have to let go of right now (including all those big, exciting plans I have), and vulnerability (so that others can offer love and support where I cannot). It’s an emotional place to be, and I have cried more over the past few days than I have in months, maybe even years. But that’s all part of the journey, isn’t it?
How often do we put everyone else ahead of us instead of actually prioritising our own self care? How often do we think that in order to be a good friend, spouse, parent, or worker we must put the needs of everyone and everything before our own? And how often does that actually work out for us?
If you’re anything like me, you’ll have spent most of your life putting others first. When I look back on my life I can see how I have done this at every step along the way. And when I actually stop to think about that I realise that there is no wonder that I have been so sick lately. Because by ignoring my own needs I have presented a situation in which my body has had no choice but to say “no more”.
I’ve been thinking about this a lot lately. And I’ve realised that if I’m ever going to truly heal and learn to live in a way that is sustainable to my own health, I need to start prioritising self care. And I need to do it right now.
Of course that’s really hard for me, because it goes against everything I have ever believed about myself and what it means to “be a good person”. It makes me feel selfish and I worry so much about what others might think of me. But that’s where the courage comes in, that’s where my word for this year is so very apt for what I need right now. With courage I can feel that fear and do it anyway. Because it is worth it.
And I wanted to share with you how I am doing that, partly because I’m sure I’m not alone in struggling with this, and partly because another aspect of self-care means using this blog for what I need on this healing journey. But as much as I love to write things down, I also find it really helpful to simply share my heart verbally too. So I took to Facebook Live this afternoon and shared the following… it wasn’t very well planned, it certainly wasn’t highly polished, but it was pure, unadulterated passion that poured out.
I mention several books and resources I’m using in this video, which I have listed links to below if you’d like to check them out. And I’d love to hear about your own ways of prioritising self care, so please do share those in the comments below too.
Today is the Midwinter Solstice, the shortest day of the year and the turning point at which we start the slow journey back towards the long days of summer. And as has become my custom over the past few years, I am taking some time out today to reflect on all that has happened over the past 12 months and what I hope to achieve in the coming year.
I find the Midwinter Solstice really symbolic in helping me remember that nothing ever lasts forever, and brighter days are always ahead. The past few years have felt like a never-ending battle, with ever more challenging situations developing despite my determination to keep going, and keep growing. Over time I have found my strength and resilience waning, both physically and emotionally, to the point where it feels like things will never change. And yet I only have to look at nature to realise that this isn’t so. Right now the trees are bare and the skies are grey, and yet I trust that Spring will come again, it always does.
When I apply this same reasoning to my own life I begin to see that even the most traumatic times in my life have come to an end at some point – my dark nights of the soul never last forever, even when I fear they might. So, when I look back on my Solstice Reflections from the past two years, I could easily conclude that yet another year has gone by and I’m still sick, still poor, still suffering. But the reality is not quite that simple.
My 2014 Solstice Reflections came during a truly traumatic time for me, when I really couldn’t see any way out of the situation I had found myself in. And yet I did, and the next year started off really well. Unfortunately by the time I reached December my Solstice Musings for 2015 seemed to find me back at square one, with another Christmas spent struggling physically.
However I was in a better place emotionally and spiritually than I had been just 12 months before, and so I was able to see that instead of going in a circle I was actually following a spiral dance, coming around to a similar spot but always just a little bit further on. The same can be said for this year too, and I am so very grateful to this blog for giving me a very tangible record of where I’ve been so that I can reflect just on how far I have come.
You see, my focus word for 2016 was “Healing”. I was determined to make sure I did everything I could to help my body heal after several unbelievably stressful years that had taken a real toll on my physical health. I started with healthier eating, regular yoga sessions, and a desire to look after my emotional health by limiting the pressures I put upon myself (which included over 3 months away from Facebook and 5 months away from this blog!) But despite all my best efforts, I ended up more physically sick than I have ever been in my life, which felt like the furthest thing away from healing as possible!
And yet, despite being so physically ill that I couldn’t even get out of bed or think straight at times, I began to realise that I have still been doing a huge amount of healing work. No longer could I ignore my body’s cries for help, I had no choice but to stop and listen. Even more importantly, I could no longer try to pretend that all was well and I could fix things by doing the same old stuff I’d always done. I had to learn to trust in something greater than myself, and accept that there was no quick fix to all of this.
Healing takes time, especially when you’ve put everyone and everything before yourself at the expense of your own well-being for far too long. You have to learn to live in an entirely different way, to accept a slower pace of life, and trust that your world will not fall apart just because you say no to things (even things you’d love to do).
Which brings me to where I am today, on the longest night of the year. Once again I am struck by the deeply symbolic nature of the Midwinter Solstice and its celebration of the return of the light through the darkness. This year has been a dark one in many ways for me, and I am ending 2016 without a firm diagnosis for why I have been so ill, despite countless appointments with numerous specialists throughout the year. But within that darkness there has been so much light for me to find, and I truly do feel as if I am firmly on a healing path, making progress step by step on this glorious spiral dance we call life.
I’ll be back again before the end of the year to share with you the word I have chosen for 2017, I’m so excited about this one! But for now I want to simply wish you all a very Merry Solstice and a Happy Christmas too.
Linking up with #ShareYourYear hosted by Belle du Brighton, as this post sums up the past year for me very nicely. Pop over to the linky to find out what other bloggers have been up to this year – it’s a great way to get a snapshot of bloggers’ highlights (and find new blogs to follow!)
Something amazing has happened over the past few days that has been truly transformational and I am so excited to share it with you. I finally broke through the fear that has been holding me back for so very long and embraced my purpose in life. And boy, does it feel good!
It all started with a simple message, a few words that just popped into my head one night when I was wondering what to post on my instagram feed as an update. If you’ve been following me for a while now, you’ll know that I have been suffering from some really challenging physical symptoms that have left me unable to get out of bed some days, let alone go out to work or enjoy the summer holidays with Little Man. As someone who thrives on being busy and putting everyone else first, this has been far from easy. It has left me feeling lost and confused about my purpose in life, with no idea how I’m ever supposed to make any major changes in my life to get there (wherever there is), when I’m feeling so utterly beaten. So imagine my surprise when this was the message I received…
Amazing, right? I mean, it just blew me away. Here I was, worrying about getting better so that I could hurry up and get on with figuring out this purpose of life business, when really what I needed to be doing was accepting that where I am right now is exactlywhere I am meant to be. The message isn’t anything new, I’ve been talking about blessings within our challenges, and finding strength within weakness for years now, but it hadn’t quite made it through the fear and into my heart and soul in a way that enabled me to break free of that fear and truly embrace what is happening in my life right now.
Because it’s huge, life-changing stuff, and my fear of that was keeping me trapped in a limbo state of knowing I needed to make change but not knowing what that change needed to be. Over the past few months I have been blessed to have support from both Pippa at Story of Mum as well as Michelle from The Joy Chaser, and through our one-to-one sessions I have begun to dig deep within my heart to find the things that drive my passion and break through the fear that’s holding me back. But as much progress as I made, something continued to stand in my way – and that, my friends, was fear.
You name it, I felt it: fear of failure; fear of success; fear of being ill; fear of being healed; fear of change; fear of no change; and on and on the fears went, contradictions within themselves, because fear rarely makes sense! After years and years of one challenge after another, I found myself living in a state of permanent anxiety, my defenses up ready for the next thing to fall apart within my life, and I was exhausted. I didn’t know which way to turn, I didn’t know up from down, right from wrong, all I knew was fear and confusion. And that is no way to live.
But that’s where I was. And you know what? As hard as it is to accept, that was exactly where I was meant to be, because if I hadn’t fallen so very low I may never have set my sights so very high. Within that moment, when the message arrived and I truly understood just how much I had been resisting the idea (“why is this happening to me?” “why won’t life give me a break?” “what is the point of it all?”) acceptance suddenly became so easy. I can’t explain it in any other way than I just let go. And as soon as I did, life began to send me even more messages that I had done the right thing.
Over the following days I saw, read, heard, and watched things that reaffirmed exactly what I knew in my heart. I listened to Marianne Williamson’s weekly talk in which she mentioned we’re always waiting to be rich/healthy/wise so we can help others, but really what we need to do is wake up and say, “Dear God, this is who I am, this is what I’ve got, these are my strengths and these my weaknesses, I give them all to you, now use me, show me my part to play in all of this.” And I knew, in that moment, that I had been waiting to somehow be ready for my life’s purpose, rather than accepting and embracing it even though I may not feel ready. Because if it’s my life’s purpose, then it will happen and I will be given the support I need to do it, if only I ask. Suddenly I understood the depth of meaning behind Matthew 7.7-8…
This same message was repeated to me as I watched Tony Robbins in I’m Not Your Guru on Netflix this weekend. Vicky from Single Mother Ahoy had mentioned it to me, and I finally got around to watching it last night. I wasn’t sure what to make of it at first, but by the end I had cried my heart out at the depth of suffering and then the power of love to truly transform people’s lives. As I listened to Tony talk about what drives him and how much his work means to him, I recognised the same kind of desire within my own heart. We all have our demons, and we all struggle with a lack of love and too much fear in our lives. But love can change everything, if only we let it.
Sometimes we need a little nudge to help us on our way and I want to be that nudge. Because what is life if not a lesson in learning how to see the love all around us and shine that into the world for others to see? My greatest gift in this life, after my ability to love and be loved, is my ability to write and communicate in a way that reaches a person’s heart and soul. When I allow it to, the message I need to share flows through me in such a powerful way. Words pour out of my mouth or onto the page, and teach me all I need to know as it happens. I have known this for years, but I have resisted it so much. I have been on a journey of denying my gifts and even turning from the faith and spirituality that grounds the work that I do. But no more. I can feel the words filling my heart once again and I can do nothing more than let it out.
Which is why I have started writing a new book, one that is based on the principles of some “power cards” I made myself last week. It is a book about a journey, from fear and resistance to love and acceptance. It is about healing and life. And it is a pure joy to be writing. I haven’t felt this excited about writing in years, and I just know that this book as a great gift to me, because it is helping me embrace my life’s purpose, without fear. And I truly hope it will be a great gift to you too.
It is a big dream, and part of a larger picture of what I feel called to do in my life as I move forward from this space. I have a strong and loving voice, and I want to use it both here and at Spirit Kid Network, to help encourage and inspire you to find your own big dreams. Because within our biggest dreams lie our life’s purpose, which is ours to take at any time. So what are you waiting for? Break through your fear, find your life’s purpose, and allow yourself to dream!
It’s funny, isn’t it, how things that inspire us can also be the things that stress us out and make us feel bad about ourselves. The internet is particularly good at presenting these things to us, don’t you think? All those Instagram posts and Pinterest boards and Facebook memes that show us, time and again, that we do not have to be beaten by life’s circumstances, that we can choose to thrive even in the darkest of moments, and that anything is possible if only we decide we really want it, are all shared with the greatest of intentions. And most of the time they achieve what they’re meant to – they inspire us to aim for something better. And yet, sometimes they can make us feel so much worse, because they seem so out of reach for us. Have you ever noticed that?
Don’t get me wrong – I love a good inspirational quote, positive affirmation, or success story. But sometimes, just sometimes, it all gets a bit unbalanced. We see snapshots of people’s lives, hear the stories of how they overcame difficulties to achieve great things, without ever truly seeing the reality of what they had to overcome in the first place. We come into the story at the end, after the battle has been forged, and though we may be shown snippets of the battle, a quick overview from where they were once to where they are now, they present us with the idea that it’s not okay to not be okay.
Maybe it’s a personal thing, maybe this isn’t relevant to you at all, but I’ve found that there is a very big difference between wanting to make change in your life because you want to improve it, and feeling like you have to overcome a challenge because it’s somehow unacceptable for you to be struggling with it in the first place.
Take, for instance, my healing journey right now. I am so terribly sick at the moment, and I am so anxious and stressed about what this means for me and my future. I do not want to be defined by my illness, and I certainly don’t want it to control my life. In that way, I am completely inspired by those who share their stories of overcoming ill health to become happier and healthier than they ever have been.
But on the flip side of this, I feel pressure to not succumb to ill health, to make sure that I do everything in my power to ensure that it doesn’t define who I am and what I do, so I hide the struggle and aim to be positive, even when deep down I am terrified. Because, at some point along the line, I have come to believe that it is not okay to not be okay.
I feel shame that I have been signed off work sick, I feel guilty that I am so heavily reliant on my family for support and have hardly seen friends in months, I even feel bad that the receptionists at my GP surgery now know me by name, and worry that people will judge me as a hypochondriac when I list off all the symptoms and specialists I am seeing right now. And this all stems from that belief that it is not okay to not be okay, that I have to somehow fight this battle and come out victorious, ready to shut the door on this stage in my life and show how I overcame the odds to create an amazing life for myself, whatever that may be.
But here’s the thing – this is a false belief, I know it is, but it is so hard to break. Because it is not alone, it is supported from all sides by similar beliefs we have ingrained into our psyche: it’s not okay to be unproductive; it’s not okay to feel sad, anxious, or depressed; it’s not okay to need help; it’s not okay to fail; and so on and so forth. We live in a society where mental health is still a taboo subject for many, and being poor, sick, or out of work is portrayed as being something you can simply change, if only you tried harder. And we’re so used to that mentality, that we don’t even think to question it.
I know that my shame and guilt and fear right now all come from these very beliefs. I recognise that my habit of worrying over the future and desperately trying to fix things, come from this feeling of not being good enough. I understand that I am my own worst enemy, and that I need to change my own perspective so that I begin to truly believe that it is okay to not be okay. Because right now I’m not okay, far from it. Right now my battle is with myself, to learn that it is okay to simply be and that doing so doesn’t mean I have lost.
Inspirational change doesn’t happen overnight, it is a journey that begins with a single step. And sometimes that first step is accepting that it’s okay to not be okay, at least for now.
If you’ve been reading this blog for any length of time, I’m sure you know by now that my health has never been great. And if you’ve followed me on instagram lately, you will likely have noticed a big “healing” theme to my posts. But the truth is, I am more sick that I have ever been in my life right now and it has been really hard for me to accept that life as a spoonie really sucks sometimes.
I first came across the term “spoonie” in my early twenties, around the time of my Endometriosis diagnosis. And it felt like such a relief to realise there was an explanation for all I was feeling. I had struggled to keep up with people for years, spent most of my University evenings staying in and getting an early night whilst my friends went clubbing, and would sleep for hours during the holidays to “recoup” from late nights and early mornings studying and finishing a multitude of assignments (language degrees tend to be pretty heavily weighted in the coursework department!)
Of course, you don’t get as many weeks’ holiday to rest once you move into the world of work, and adding in a commute meant that my mid-twenties taught me a lot about my limits as a Spoonie and that sometimes you just have to make sacrifices. By the time we started trying for a baby I thought I knew my limits and how to honour them. How wrong I was!
The past 5 years have been filled with events and experiences that have pushed me beyond my limits in a way I could never have imagined. Hyperemesis during pregnancy (with anaemia, Obstetric Cholestasis, and an unstable pelvis to boot) meant that I started my life as a parent physically beaten and emotionally exhausted. Sleep deprivation, which continued for years with our Little Man, who still at almost 5 years of age only sleeps around 9-10 hours a night and wakes regularly in the night too, affected my ability to rest and recover.
Returning to work, to help make ends meet and pay off our debt, meant that I had less time than ever before and suddenly had to split myself between work and home life. This became increasingly difficult when I moved into a homeworking role, one where my passion for the cause blinded me to the dangers of being “on the front line”, meeting people’s needs when those needs were intrinsically linked to my own personal trauma. And on top of all that, my husband was diagnosed with Small Fibre Neuropathy, meaning he lives in immense daily pain and, as he struggles to come to terms with his diagnosis, his emotional and mental health has taken a real beating.
So, as you can imagine, by the time we reached the end of 2014 I was completely and utterly spent. I remember crying as I walked the long route to nursery to collect Little Man, because I didn’t know how I was going to take another step. I remember being so terrified that I was losing my mind when I became obsessed with what was happening at work and I couldn’t eat or sleep as the anxiety made me so ill. And I remember praying for an answer, knowing that I had given it my all (and more) and I just could not go on any longer…
Of course, I was made redundant at the beginning of 2015, and things began to pick up. I felt well again, I had energy, I was sleeping and cooking and eating and enjoying life. Heck, when we finally moved back to my hometown I started two new jobs, working far more hours than I had initially contracted for, and spent almost every weekend busily attending conferences, visiting family, and having a great time. I thought that was it, that I’d survived the burnout of the past few years, and things were finally on the up!
Except, now I know better. That initial sense of relief that came with making positive changes in my life, was short-lived. No Spoonie can run themselves dry, borrowing not only days’ but weeks’, months’, even years’ worth of spoons without repaying it at some point. And yet still I tried to ignore it. The latter part of 2015 was overshadowed by three-day migraines, daily nausea, awful cramps, all of which I assumed were symptoms related to my Endometriosis. I ended the year with surgery and new meds that had helped previously and I thought 2016 would be okay. But it wasn’t.
I began this year experiencing extreme fatigue that seemed to last for days, especially after a week at work when my shifts all fell on consecutive days. I also began to suffer from joint pain again, as my left hip kept trying to “pop out” without warning, day after day. So I saw the doctor, thinking it was my Hypermobility. Except this time the word “autoimmune disorder” was mentioned and I was referred to a Rheumatologist. Since then I have had another GP, a consultant, and a physiotherapist all mention various autoimmune disorders to me, and I am awaiting screening for Lupus as various things in my blood report suggest it as a possibility. And I finally have to accept that after all I’ve been through, all my body has endured, this is perhaps inevitable – if you don’t respect the spoons you have, things are gonna get worse!
And I look back over the past few years and wonder why I was so determined to ignore that. It’s not that I didn’t know it, because I’ve always known it. My mum was diagnosed with ME when I was in my teens, so I have known about autoimmune disorders for most of my life. I also knew that there is often a crossover of these conditions, where someone like me with Endometriosis (for example) could have a higher risk of developing an autoimmune disorder. It’s one of the reasons why I finally decided I could never have another baby – my body did not recover as well as many of the other Hyperemesis mums seemed to, and I’d watched a dear friend go on to be diagnosed with Lupus following her own Hyperemesis pregnancy. I just didn’t want to risk that. No, I knew about the risk, I just chose to ignore it.
Perhaps that is unfair. The reality is that I had very little choice – my baby needed caring for, my husband needed support in coming to terms with his diagnosis, and the debt needed paying off. Whilst in hindsight I may have made different decisions (for instance, we paid off our debt much quicker with me in a part-time role than we did when I was working full-time!) I can’t go back and change it now. All I can do is learn from it and move forwards.
The reality of life as a spoonie is really clear to me right now. I am so sick that I do not have good days, not really. A good day to me is one in which I can get out of bed, eat without feeling too sick, play with my child a little bit, and maybe put a load of laundry in so that we have some clean clothes. On days like that I have to remind myself to limit what I do, that whilst my house is a mess and I’d love to take my son to the park and enjoy the sun, if I do so I will regret it tomorrow. Because my bad days are really bad. On a bad day I can barely move – I just do not have any energy – and I run a fever, feel dizzy and sick, and struggle to even concentrate on the smallest of tasks like reading a book or sending an email. And I want to avoid those bad days as much as I can.
I know there is no quick fix to this. I know that I ran on borrowed energy for far too long, and that I have to repay that debt with exactly the same amount of care and patience as we paid off our financial ones. But it is hard, so hard! There are days when I feel like a terrible mother, because all Little Man hears all day is, “I’m sorry, mummy feels too poorly to do that.” There are days when I feel like a terrible wife, because TJ is also struggling and I simply cannot do anything to help him out any more, I have to look after myself first. And there are days when I feel like the world’s worst friend, because I’ve not been in touch with anyone for weeks (not even on Facebook) and my mum has to call me to tell me a friend has announced her much wanted pregnancy so I don’t miss it entirely. But that’s the reality of life as a Spoonie, especially when you’ve run out of spoons.
I’m hopeful that as and when I embrace this life of a Spoonie, really accept that this is how things must be and that the sacrifices I make are for a better future, that things will get better. I know many people who have been where I am and have then gone on to manage their condition better over time. I know it is possible to come back from this, and that is what is keeping me going right now. But the only way to do that is to listen to my body, honour its desperate need for rest, and do whatever it takes to begin to heal. I mentioned to someone recently that I know if I am ever to heal, I need to make BIG change in my life. And that’s the reality of life as a Spoonie.
Tell me, if you’re a Spoonie, what does life as a Spoonie look like for you?
Today hundreds of bloggers are meeting together in London for the annual conference run by BritMums, rebranded this year as #BML16 for their 5th year. I have been to BritMums Live (as it was previously named) every year since 2012 and, as always, I initially purchased my ticket as soon as they became available last year.
I had every intention of attending this year too, even writing a post about it for the BritMums blog, because the thought of not being there never even crossed my mind. Walking into The Brewery each year feels like returning home. Meeting up with old friends and making new ones is such a wonderful experience when you spend the vast majority of your time connecting online (if I ever doubted I was a people person then BritMums Live certainly confirmed it for me!) and I never, ever wanted to miss it.
But then I got sick. Or rather, the underlying illness and exhaustion I’ve been experiencing for years now took a massive turn for the worse, and despite ending 2015 with hopes that we were getting on track with my treatment, 2016 has brought more questions than ever. I’ve spent the vast majority of the year desperately hoping to feel better, but a couple of months ago I realised that I simply had to accept the fact I could not guarantee I’d be well enough to attend #BML16.
So I sold my ticket. And it turned out to be a really sound decision, as I have spent the past week pretty much confined to my bed with flu-like symptoms, yet again. Unlike the trip we have to London next week, which will be an easy day trip and possible to manage even if feeling under the weather, I knew that the full schedule of #BML16 would be impossible to manage if I weren’t 100%. Being so sick this week has reassured me that I made the right choice.
And yet, my heart is breaking. I’m seeing all these updates on Twitter and Instagram from people I know at an event that has been an integral part of my calendar for the past 4 years, and I’m not there. It is yet another blow to my already fragile heart, making it clear just how sick I am. And as much as I already know this, for some reason today it feels harder than ever.
I guess it’s because this is where my passion lies – blogging, networking, communicating, socialising, it’s what I do best. This past year has been a little bit crazy, with setting up a new blog and a new business (admittedly both of these have been very slow to grow because of my current health, but growing they are) and I actually took several months away from The Family Patch, my online home of more than 5 years.
But coming back to it has been an absolute delight, a homecoming of sorts, and quite a revelation as well that I have an awful lot of evergreen content on here that has kept my stats steady despite no updates or promotion for well over 3 months of the year! It’s another reminder that this is what I do, this is what I am good at, and this is what I love the most. So to miss out on #BML16 because of my health is like a punch in the gut.
I know that I can follow it all online, and I know that the conversation continues long after the event itself. I’m looking forward to reading everyone’s posts and sharing in their joy… but I wish I had been able to be there too. And that is where the greatest motivation lies for this healing journey I am on, to regain my health so that this time next year I’m right back there with everyone, enjoying every single moment.
That’s not to say that there aren’t other motivations to get well, because there truly are. I want to be well because, quite frankly, being this sick sucks. Big time. I don’t think I’ve ever been this ill in my entire life, and that’s saying something! I want to be well for myself, and for TJ and Little Man. I want to be well so that I can work without exhausting myself entirely. And I want to be well so that I can finally step onto this path of writing and networking that has always been my destiny but which I have shied away from making my career for such a long time.
Which is why being well enough to attend #BML17 is my greatest motivation yet – if I can find myself heading to London this time next year, with a smile on my face and the courage to say “this is who I am, this is what I want my life to be, and this is how I’m doing it”, then I shall know that I have made an incredible, life-affirming change in my life.
So thanks #BML16 for showing me all that I am missing this year – it’s the heartache of missing you that makes me so determined to change my life so I can see you again!
Do you remember that I recently discovered how little I love myself and that I thought it was time to change that? Well, as so often happens, once I made that decision to change I found that the Universe was more than happy to provide me with the resources with which to do so.
I can’t even remember in which order each new idea and resource came to me, I just know that within a few days I found that I had gone from feeling totally deflated by it all to fully enthused about the power within my own mind to make positive changes in my life. And all of this was thanks to affirmations.
Have you ever heard of affirmations? I sure had. I think I first came across them in my early 20s, so maybe 10 years ago now, but at the time I just didn’t seem to understand them. I misunderstood the idea, thinking that if you did them right then affirmations would make everything okay by removing the obstacles in your life. Which means that because I continued to have ill health and other difficulties in life then I must either be doing them incorrectly or they must not work. How wrong I was!
You see, I’ve come to understand that the true power in affirmations lies not in their ability to make everything in your life rosy and comfortable, but rather in their ability to change the way you perceive what is happening in your life. It’s not what you are experiencing that matters so much as how you are experiencing it. Let me explain…
For a very, very long time I have suffered from a variety of health issues. In fact, when I was asked recently to write a review of my life I found I got stuck almost immediately in defining myself and my life experience through these health issues. Now my previous way of understanding how affirmations work would have led me to believe that I simply wasn’t very good at them because if I were I wouldn’t have had to struggle with so many illnesses. But my current understanding is this – affirmations don’t magically remove the physical manifestation of an experience we have (e.g. an illness) but they do help us to perceive them in a whole other way (e.g. this illness does not define who I am).
And it is this change in perception that really makes the difference. Since starting daily affirmations (in front of a mirror, for extra self-reflection) I have found that my thought process is changing in such an incredible way. Things that I have struggled with for years (such as self-doubt and self-criticism) are suddenly being replaced by far more positive thought patterns (e.g. self-love and self-worth) without me evening consciously thinking about it. And the beauty of this is that it is all really very simple too.
Whereas I would previously have worried about saying the right things, doing things in the right order, or trying to logically work out the reason for my suffering, I have recently being choosing to follow my intuition. I choose an affirmation that feels right for me in that moment, and then I repeat it (out loud whenever possible) and focus purely on the repetition, like a mantra. I say it as many times as feels right and I change up the wording to suit. By choosing not to overthink or over-analyse what I am doing, I find a true freedom that allows the healing to really begin.
By repeating affirmations such as “I love myself just as I am,” and “I am safe, I trust life” I find that my whole worldview changes. I look in the mirror now and think, “I’m beautiful” rather than “gosh, aren’t I so plain!” and I feel myself letting go of the need to “fix” everything, realising that sometimes things just happen for a reason that I may not yet fully understand. For instance, I understand now that “trusting life to bring only good things to me” doesn’t mean my life will be without pain, but rather any pain that occurs will bring something of value to me in some way.
This may seem glib, I know – I’ve often felt that way about affirmations too! But I promise you that if you give affirmations a go, really try them for a few days (at least), you may well find that they bring major changes into your outlook and therefore your experience of life. Let me tell you some of the things that have changed for me in the past couple of weeks, all thanks to starting a daily practise of affirmations:
I recognised a pattern within myself and TJ whereby guilt from the suffering we both went through during my pregnancy led to me playing the martyr and him the victim. Realising this helped me to open up to TJ about it, which in turn helped us to talk more openly than we have in a very long time.
I have been able to let go of anger and a sense of “injustice” over events that have occurred during the past few years, allowing me to see that within all the pain there were real opportunities to grow – namely the fact that it was only by becoming so low and out of touch with myself that I have finally chosen to change the pattern of a lifetime! What a blessing that is turning out to be…
I am becoming more and more aware of just how much of my suffering in life has come from a very deeply rooted lack of self-love and trust in my own body. But instead of obsessing over which came first – the suffering or the lack of self-love – I find I am able to simply focus on loving myself more, regardless of everything else.
As a result of more self-awareness and self-love, I have been stepping out of my “must do, must achieve” survival mode and into a more gentle and nurturing style of living. I find myself slowing down the pace, investing in my own well-being, and discovering who I am rather than focusing purely on what I do (or don’t do, as the case may be).
I have gone from finding it almost impossible to wake up in the morning, experiencing a sensation like trying to swim through treacle back to consciousness and struggling through the day with next to no energy, to rising from my bed with ease and excitement for my moments in front of the mirror and the day ahead. This can only be attributed to the change in my perception, from dread of what may happen to joy for what could happen. I wake with ease because I want to wake up to another day… you can’t get more symbolic than that!
To think that these (and so many other changes) have happened in such a short amount of time is, quite honestly, mind-blowing to me. Because, you see, making 5 minutes every morning for affirmations in front of the mirror is so easy. I can’t quite believe that something as simple as this could have such an amazing effect, but it has. And that’s the power of affirmations!
Tell me, do you use affirmations? How do you find them? I’d love to hear your thoughts!
Or maybe you’re a little uncertain about affirmations, just like I was? In that case, why not check out my free printables that could help get you started?
And don’t forget you can follow my daily updates on my healing journey over on instagram – I’d love to connect with you there!
Linking up with #sharethejoy – your weekly dose of inspiration!