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.
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!