As you may have guessed from my previous post, I’ve been feeling pretty down about things lately. In some ways this is a huge leap forward for me, as I have spent a lot of my life trying to avoid this kind of feeling. I haven’t wanted to become a victim of my life’s circumstances, choosing instead to find a positive spin for most things. And I’ve brushed aside comments from others along the lines of, “I don’t know how you deal with all of this,” because I’ve chosen to ignore the fact that my life is far from normal in many ways. But as helpful as this has all been in helping me to keep going through thick and thin, it hasn’t been very healthy.
Because my life isn’tnormal. I suffer from multiple chronic illnesses that deeply impact my life, and that of my family. The constant fatigue, migraines, nausea, joint instability, and muscle spasms mean that I struggle with some of the most basic activities, such as taking a shower or preparing a meal. I can go days without doing either of these things, relying on my husband (who is also chronically ill) to bring me food and drink, and help me survive whilst stuck in bed. And on my worst days even lying in bed feels too taxing, as my heart races and my head spins.
Sometimes I know the cause of my most recent flare of symptoms, like a sudden change in temperature or catching yet another virus (having a young child makes this inevitable!) But at other times I have no idea what has caused me to go from functioning reasonably well to totally incapacitated, and I struggle with this aspect of my ill health the most. After all, how can I possibly hope to ease my symptoms and reduce the likelihood of another flare if I don’t know what the cause is?
This lack of control is deeply disturbing, and as a result I have clung desperately to the hope that one day (hopefully soon) I’ll gain a better insight into my health issues and figure out a way to get my old life back. But more and more I am realising that wishing for my “old life” is neither productive nor wise. Sure, it would be wonderful to no longer feel sick on a daily basis and be able to do more with my family and friends. And financially we’d be much better off if I could return to work and get out of the cruel benefits system that treats those of us who are ill as worthless (on a side note, it has now been over a year since my PIP assessment and I’m still waiting for a date for my tribunal hearing). But the point is I’m beginning to realise that I’m wishing for the wrong things.
Instead of hoping to somehow miraculously recover from the worst of my symptoms, I need to be working on accepting where I am right now. Instead of focusing on what I can’t do, I need to look at what I can do. For instance, I’m currently creating a website for our church and, due to a combination of school holidays and this most recent flare of symptoms, progress has been very slow. My anxiety over this has increased the more time that has elapsed, as I feel like I’m letting people down. Yet multiple times this week people have reminded me that I’m doing something nobody else in the church can do, and even if it takes me several months to complete it will still be a very valuable contribution.
On a rational level, I can see how flawed my thinking is. I’m valuing myself on what I can give and not on who I am, because who I am right now feels like a complete and utter failure. But instead of feeling angry at the cards I’ve been dealt, I feel angry at myself for not handling things better. Instead of acknowledging the grief related to the loss of my health and the dreams I had for my life, I’m punishing myself for not making better choices. And by refusing to accept this as my new normal, I’m denying myself the chance to truly grieve.
But I want to be able to face the reality of my situation and begin to feel all the emotions that come with that. I want to readjust my measure of self-worth so that I can celebrate the small victories (like making it out of the house) without comparing them to things other people do. I want to love myself enough to know that it’s okay to be angry about all I’ve lost, without having to justify that anger and pain. Which is why I have chosen to rebrand the blog to reflect this, giving me the space to come and share my thoughts, feelings, and experiences as I begin to explore living life in the slow lane.
Because that’s where I’m at right now, in the slow lane. Everything I do takes much more time and effort than it used to. I’m no longer planning what I’ll do next week, month, or year, and I’m certainly not able to plan out a future for myself. All the media messages about doing and being more seem irrelevant to me (and make me angry, if I’m completely honest with myself), because I’m having to learn how to do and be less. And my biggest dream right now is to feel well enough on a day-to-day basis to simply potter around the house and garden, do a bit of crafting, and enjoy a bit of company from family and friends.
Life is suddenly all about the simple pleasures, and letting go of the big dreams that are no longer possible. It’s a huge change for me, and one which requires a lot of mental effort in facing the inner demons that scream “this isn’t enough” and “you don’t deserve this”. I’ve got to learn how to grieve for the losses and redefine my self-worth as a sick person. And I’ve got to accept that there truly is no quick fix for this, it’s a journey that I cannot rush. This is life in the slow lane.
Do you believe that your body has the ability to heal itself? Or do you think that some things like age, chronic illness, and mental health problems are beyond any natural healing ability we may possess? Are some people naturally gifted with good health, whilst others suffer with no hope of a life beyond their limitations, or do we all have the opportunity to gain optimal health, whatever that may look like for each one of us?
learning to distrust the body
I’d love to say that there has always been a part of me that at some deep level believed in the body’s ability to heal, but to be honest with you that simply isn’t true. I have been sick, to some degree or another, for most of my life. I was diagnosed with Asthma aged 2, and so some of my earliest memories are of concern over my ability to breathe comfortably. Whilst I seemed to naturally outgrow this particular challenge, by the time I reached puberty other health issues had already stepped in to take their place.
My hypermobile form of Ehlers Danlos Syndrome (hEDS) had made me so clumsy I was regularly at A&E for an x-ray or because I’d got concussion or needed a wound cleaning. And once puberty arrived I was debilitated with crippling cramps, horrific nausea, and incredibly heavy and irregular periods. My teen years were spent trying to cope with these changes in my body, things I believed I had no control over, and I ended up heading into adulthood thinking that this was just my lot.
belief in others vs belief in self
As a result of this, I began to trust in doctors and medication as my only real option for any semblance of a “normal” life. And whilst there is nothing wrong with putting faith in modern medical science, there is a real danger in putting all of your hope into a medical system that still has no answers for many health conditions affecting the world today. If I had an accident and required emergency treatment, for instance, then I would seek out the help of a trained doctor. Likewise, if I developed an acute infection, I would visit my GP. These are areas in which modern medicine excel. But when it comes to chronic conditions, this is often far from the case.
My own experience has been one of seeking help from a variety of doctors and specialists over many years, always putting my hope in the chance that this doctor may finally have an answer for me, and almost always being highly disappointed. I was 17 when first diagnosed with Hypermobility, and 31 before anyone mentioned the term Ehlers Danlos Syndrome to me, explaining that my digestive health issues were probably connected to the same condition affecting my joints. But even with that explanation, there was no real helpful treatment options.
Endometriosis is another condition which has plagued my life, leading me to be on some form of contraceptive since I was 15 (most with very negative side effects), and going through no less than 4 pseudo-menopausal states in attempts to limit my symptoms. Yet you can imagine how many extra symptoms those brought up for me. So, you see, putting all of my trust in the doctors who have no real answers as to why these conditions occur nor how to adequately treat them, led to a deep distrust of my own body. If the doctors can’t even manage it, then how can I?
changing the dynamic
Which brings me to where I find myself today. After 3 decades of believing I was simply a “sick person”, whose lot in life was simply one of physical pain and discomfort, I am finally starting to challenge that belief. I’ve spent the past 3 years of my life becoming increasingly more and more debilitated, to the point where my body barely functions most days. I can trace the initial increase in symptoms to a very specific point in 2015, when a virus combined with a very busy period in my life led to a complete overwhelm of my system. And yet I know that whilst this was the tipping point, it wasn’t the start of this downfall.
A series of events following my pregnancy and becoming a parent to a child with additional needs, led me to disregarding my body’s own needs and placing everyone else’s first. This was a recipe for disaster, given my body’s natural disposition towards ill health. But I didn’t listen to my body’s needs, nor the messages it sent me through my intuition and increasing symptoms. Because I already believed that this was simply my lot in life, to suffer. And that belief goes right back to my childhood.
This ill health I have now is not a new thing, it is something that has developed over a lifetime of distrusting my body, and placing my belief in external sources rather than my internal ability to heal. And when I began to realise just how far back this goes, I realised that I had impossible expectations of what healing might look like. I was hoping for a “quick fix”, something which would take away the most unpleasant symptoms I have each day, rather than building up healing and resilience from my very core beliefs about myself. Those “quick fixes”, which are often medications to alleviate symptoms, are fine in and of themselves, but they won’t lead to long-term healing. That has to come from within.
healing to your optimal version of health
Now, before I go any further I want to make something abundantly clear. I am not proposing the idea that the body can heal from anything and everything. This isn’t some ‘miracle cure-all’. Neither am I suggesting that it is our own beliefs that cause illness. Such thinking is overly simplistic and, quite frankly, dangerous. It suggests that those with serious health conditions can simply will themselves to be better through the power of positive thinking. And that’s bullshit.
Too often those of us in the chronic health community are told that if only we did this, or changed that, we’d miraculously heal. Such recommendations, no matter how lovingly given, are dis-empowering at best and damaging at worst. People need to be believed, they need to have their symptoms respected, and their daily efforts recognised. Life is hard for all of us, and for some people that is most profoundly felt through their physical and/or mental health.
But that doesn’t mean that those of us who do struggle with our health cannot aim for our own personal version of optimal health. And that will look different for everybody. For me it means that I will always have a genetic condition that affects the connective tissue in my body, and so I will always have to adapt what I do to support that rather than aggravate it. Yoga postures must be adapted, diet must nourish without irritating, adequate rest must be incorporated into my day, and some days I’ll just have to accept that it’s a bad day and in order for my body to heal I need to honour what it’s telling me in that moment.
The same goes for my anxiety and the pain felt regarding certain events that have happened in my life. No amount of positive thinking and lifestyle changes will affect my ability to have more children. But I can work on honouring the fact that my body carried and gave birth to this beautiful child of mine, and that my love for him is enough. I can stop beating myself up for not doing more, and cherish what I can do.
healing work is sacred work
Over on instagram, my profile says that I am on a “sacred healing journey”. This is something I came up with last year, and it has stuck. Healing requires going into the very depths of your being, having the courage to face the darkest parts of your soul, and learning to trust in your body’s ability to heal. If that isn’t sacred work, then I don’t know what is.
But it’s hard to recognise the power and impact of what you’re doing, when it feels like you’re simply lying in bed, or battling through your inner demons just to make it through the day. Some days it feels like you’ve done nothing but simply survive – and that’s sometimes exactly how it is. You need to acknowledge these days as a part of your journey, but don’t let them define you. Because those days are the ones which remind you of your feelings of inadequacy and powerlessness. Those are the days which whisper that you aren’t enough, and that this is simply how it is. Those are the days you simply have to survive, knowing that a new day will come.
And when that new day finally comes, you do the sacred work. You go within, you trust yourself, and you learn to find a new way of living. Sacred work is beautiful, but it isn’t easy. It means facing those parts of yourself that you hate the most. It means working with your limitations, rather than trying to work despite them. And it means knowing that it took you a lifetime to get to the place you are right now, so it’s going to take you a lifetime of learning to trust yourself and your body. This isn’t a quick fix. This isn’t a cure. This is life.
trust your intuition, choose your tools, and find your community
Because sacred work is so hard, you need to surround yourself with the tools and community to support you along the way. Nobody can hope to do this alone. There is a reason that humanity has long sought community with those who are also on the same path – we need friends who understand where we’re coming from and will walk with us. In the past this was often limited to what was available in your local area, but nowadays you can easily connect with people from across the globe via the internet too.
Of course, the problem with this is that there can often be too much information and too many options to choose from. How do you know what will work for you? Well, I’ve found that the best way is to try out a few things and see what your gut instinct is telling you. If something feels right, go with it. But if something feels wrong, drop it, even if everyone around you thinks it is the best thing ever. It is only the best thing if it feels right to you.
I experienced this recently quite significantly. During meditative time (which I have always resisted), I felt an overwhelming rush of love, and realised I was far from alone. From that experience, I began to realise areas where I had been trying to control the uncontrollable. For me, this was most pronounced in my diet. Because of my digestive issues I had gradually restricted my diet more and more over many years, and I had ended up surviving on mostly dry carbs (jacket potatoes, oatcakes etc) and snacking rather than eating proper meals. I was missing out on so much protein and fat, and not allowing my digestive system the power to work effectively (and it’s a sluggish system, so it needs all the help it can get!)
As I began to consider changing my diet, bringing in foods I’d have never eaten before through fear, I started out on the Autoimmune Protocol (AIP). However a week into it I realised that it was not healthy for me. I was beginning to fear eating the wrong things, and my body was wanting less meat and a few more carbs. So I followed my gut (pun intended) and dropped the AIP diet in favour of trusting what my body was specifically asking me for. I had begun to recognise the difference between a craving (chocolate) and an actual need (carbs), as well as recognising that my body was happier eating stews and soups rather than roast dinners.
About a week later I stumbled across an Ayurveda dosha quiz, and discovered that my constitution is strongly Vata (air). The description of Vata not only perfectly described my natural characteristics, but it also explained many of my current symptoms. It even recommended eating soups and stews, to avoid food that was too “dry”. My intuition, once I actually tuned in and listened, had told me the same thing an ancient medical practice was also suggesting. By learning to trust my body’s ability to heal, I had tapped into what I needed.
Whatever tools you choose to use, and whichever community you choose to join, remember always that flexibility is the most important thing you can ever embrace. Your needs and preferences will change over time, both as you age and as the circumstances in your life ebb and flow. What works for you now will be completely different to what worked for you last year. So don’t feel as if you have to stick to something long-term if it isn’t working for you anymore. Try new things and go with the flow.
belief is everything
More than anything else, healing is only possible when you believe it is. This has been shown countless times within studies using placebos, for example. That’s not to say that the things you do or take, be that lifestyle choices or pharmaceutical medication, have no effect. Of course they do. Exercise has an impact on the body. Meditation has an impact on the body. Diet has an impact on the body. Medication has an impact on the body. It all does. What I mean is that it is your belief in the possibility of healing that amplifies the effect.
For instance, I have been seeing the herbal medicine team at my local college for about 18 months now. I have a review with them every 4-6 weeks, and we tweak the tincture accordingly. And whilst there was a small, immediate effect from taking the tinctures, it was only once I truly began to believe that this medicine had the power to change my life that I started to see real effects. And, interestingly, most of the effects have been psychological rather than physiological so far.
I’ve begun to trust in my body’s ability to heal itself, and been making changes accordingly. I removed my Mirena and became contraceptive free for the first time since my teens last Summer. And over time I have started to understand and accept that some of the very physical challenges right now are not going to vanish overnight, because my body has to rebalance itself after years and years of neglect and abuse on my part. I have hated on my body for such a long time, learning to love and trust it is a huge thing. And I truly believe therein lies my ability to heal.
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?