Today my herbalist and I talked about the effects of chronic stress and how the body can get stuck in fight or flight mode.
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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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 are made 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 experience of 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.
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!
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.
Music Credit: Grass by Silent Partner
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.
mummyneversleeps (whose husband is a sufferer)
If you search using hashtags such as #may12, #mecfs, #myalgicencephalitis, #chronicfatigue, #fibromyalgia, #spoonie, and #butyoudontlooksick, you will find so many more accounts to follow!
You can also find more information about these two conditions at the following places:
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.
Louise L Hay – Affirmations
Louise L Hay – Wisdom Cards
Abby Wynne (and her book How to Be Well)
One Woman Revolution (and their YouTube channel too)
A Woman’s Book of Yoga (and New Mum Online who introduced me to this book)
Neale Donald Walsch (and his books Conversations with God)
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).
When I look back on all the progress I’ve made this year in terms of self-care and self-love, I realise that I have done far more healing than I ever expected. I learnt that it’s okay to not be okay sometimes, that affirmations set us up with the perfect mindset from which to heal, and that self-love is something I struggle with a lot.
I’ve started to change the way I care for myself, by connecting with other chronically-ill people who understand the realities of spoonie life. And I’ve been learning to honour my limits (even when that meant missing out on something I truly love), and investing instead in things that will truly help me where I am right now. This year I’ve been blessed to have one-to-one sessions with both Pippa from Story of Mum and Michelle Reeves, who have each taught me so much about myself and my ability to heal and grow.
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 exactly where 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!
Well, hello there! It seems like such a long time since we spoke, and I have missed you on so many occasions. How have you been?
I kind of disappeared all of a sudden, without very much warning, didn’t I? I hadn’t realised just quite how confusing that would be until several of you mentioned wondering where I had disappeared too. The truth is that I had an epiphany moment one day when I realised I needed to step away for the sake of my own well-being and I wasn’t even sure I’d come back.
Have you ever had a moment like that, when out of nowhere you just know you need to step away for a while in order to find your feet once more? Looking back I can see that I had known deep in my heart I needed to do it for such a long time but, as is so often the case, I resisted it for far too long. So when that moment of clarity arrived I acted upon it swiftly and surely and I didn’t look back.
I cannot tell you how good it has been for my soul to put that distance between myself and what I had been doing here at The Patch. The past 5 years have been such a massive challenge for my little family in so many ways and by blogging so openly and honestly about it I found that every time I came online I was reminded of each battle, each wound, each pain. I wasn’t able to give my heart, soul, mind, or body chance to heal and that was what I so desperately needed to do.
So you can imagine how amazing it felt to get away, put some distance between myself and the past, and allow myself the chance to begin finding out who I am now and what I want from life. It’s an ongoing process but I finally feel like I have reached a place where I am able to see the scars healing where there were only open wounds a few months ago. I think the best way to sum this up is in a thought that came to me just the other day…
If you want to add value to the lives of others, you have to first add value to your own
It’s akin to the old saying “Healer, Heal Thyself” really isn’t it? For too long now I have been trying to help inspire, encourage, and support others when I desperately needed to do that for myself first. Over the past few weeks I have started taking great strides in that direction and I have to say it is really making things flow in such a different way than they were before.
Words are suddenly pouring out of my heart and onto the page where once the fear within me kept them locked up. And opportunities to make life-long dreams come true are starting to appear, making me wonder how on earth I ever missed the connection that seems so obvious now (more on this later, it is a whole new direction for me which I’m currently working on behind the scenes).
Even more amazing, for me, is that now that I have started to value my own well-being enough to ask for help I am finding that support is coming from so many different directions I can hardly believe it . Just this past week an unexpected package arrived in the post which came at exactly the moment I was beginning to question things that only a gift like that could answer. And suddenly I find that I have the overwhelming urge to reopen The Family Patch and start reconnecting with you all with a lighter heart and a happier mind.
I’ve given it all a bit of a freshen up, to mark the occasion as I come back to blogging here, but don’t be surprised if it continues to change over the coming weeks. For the first time in far too long I actually feel like it doesn’t matter what I write or how I write it here at The Patch – this space is my own and it is a place for me to do what matters to me. That freedom is something that has been lacking for far too long here and I am so happy to change it.
So, all I have left to say is that I am so very glad to welcome you back here to my little online home. I do so love having you here and I cannot wait to catch up with you all.
I’m sharing this post with the #sharethejoy linky over at The Joy Chaser as being back here at The Family Patch really does bring me a lot of joy!