The balancing act of good days & bad days

The last few months have been a strange time for me. After a relatively good January, February-March was one of the longest bad spells I have had for a while. The bad days far outnumbered the ‘good’ days. My health always goes in waves; bad patch, good patch, bad patch, good patch. But the length and severity of the bad patches, and the length and ‘goodness’ of the good patches, varies massively. I guess this means I have good and bad patches of good and bad patches?! That’s a head-scratcher.

A longer-term good patch might be 2-3 fairly bad days, followed by 4-5 pretty good days, then back to a few bad days, etc etc. February/March was a longer-term bad patch. This means several weeks at a time of bad days, followed by perhaps 1 or 2 days of feeling a little better, of hoping that the bad patch was over and I was on my way to a better place, only to be met by another few weeks of bad days. It is at these times that my mental health suffers most and I find it hard to cope. Having several weeks of bad days with only the odd good day or two in between, makes it feel very relentless. Somehow, having at least a few good days in a row makes me feel like I’ve had a bit of a break from it all. I get to do some nice things, meet some friends, hopefully do some yoga and tidy up the house a bit; before it all comes crashing down again. But the trouble with the longer-term bad patches, is that the good days are so massively outweighed by the bad days, that there is nowhere near enough time to fit in all the things that I want or need to do; the chores, the responsibilities, the workload, the relationships, and, most importantly, the fun.

And the strange thing is that those one or two slightly better days in between, can actually be worse than no good days. When it’s bad day after bad day, I somehow come to accept that I feel shit, and that there’s not much I can do about it. I know that nothing much is going to get done and instead, each day just becomes a quest for survival; the aim is simply to make it to the end of the day, no greater expectations. But when I have a glimpse of a better day, it gives me hope. Maybe a better time is up ahead. Maybe this is IT; maybe I am actually recovering and from now on it will just get better and better and I will never be as sick again as I was yesterday. Maybe tomorrow I will be able to clean the house. Maybe tomorrow I will be able to go to yoga class. Maybe this weekend I will be able to catch up with some friends.

I have written before about how important hope is in chronic illness. How, when all hope for a better future is lost, chronic illness becomes unmanageable. And in the bigger picture, I still think this is true. But day-to-day, hope can also be crushing. Because when I wake up tomorrow and it is, in fact, not a better day, there is a sense of loss. Grief, even, for the good day I thought was mine for the taking. Disappointment that I won’t be able to fulfil my hopes of getting the housework done or having a productive day at work. Guilt that I will have to let my friends down, for the millionth time, because those plans I had scheduled on a good day, are no longer manageable when today is a bad day.

On the good days, my awareness is suddenly brought back to all the things I want and need to be doing. I feel like I have been left behind from my own life. Like I have to catch up on all the things I missed out on on the bad days. And I have to suddenly catch up on it all right this second, before the opportunity is taken away again.

Chronic illness is the most enormous juggling act. I have the to-do list of a healthy person, with only a fraction of the days in which to complete it. The first good day after a bad spell brings so much pressure. What do I prioritise today? My instinct is to prioritise work. My PhD is important to me; it matters. And after several days or even weeks of feeling like I have only been touching the surface of what I want to be achieving, the sense of suddenly being able to work at full-pelt feels liberating. But then….what about the housework that needs doing? Those jobs that I simply have not been well enough to worry about, like scrubbing the shower or changing the bedsheets or emptying the bins. Wouldn’t it be great to get those jobs done so I don’t have to worry about them if tomorrow is another bad day? But then, what about yoga? Oh how nice it would be to roll out my mat and stretch my body and feel my breath and focus on how good I feel after being curled up on the sofa for so long. Or better yet, I could go to a yoga class and combine the joys of yoga with a change of scenery and some social contact. But, what about those friends I’ve been cancelling on recently? Wouldn’t it be great to give someone a call and catch up over a cup of tea? To be able to talk to someone about what a tough time it’s been recently and how grateful I am that today is a brighter day. To ask how they are and what has been happening for them. To chat, to laugh, to moan. To be a friend. And what about my relationship? Wouldn’t it be amazing to head out for dinner or go to the theatre or out for an evening walk? Wouldn’t it make me feel so happy, so alive, to be able to be a girlfriend and focus on his needs, on our needs?

How on earth does anyone make such choices? We all lead busy, stressful lives, and we all have to decide what we want to prioritise. But when the number of days available to you are cut so significantly, and when you have absolutely no idea when the next available day will be, how do you decide? And then there is the risk of trying to squeeze in too much; of tiring myself out and bringing myself crashing back down into another bad patch. Every tiny decision of how to spend my time feels like life or death because the consequences are enormous. There is a constant pressure to make the right choices. To not fuck it up, for myself or anyone else.

And yet, having to make these choices forces you to think about what is really important in life. I don’t want to live in a pigsty, but does housework really matter? When I’m on my deathbed will I look back and say “I wish I had changed the bedsheets more often”? My PhD is important to me and I want to do well, but as PhD students we are always taught to let go of perfection; to learn how to just be ‘good enough’. Perhaps I am lucky that chronic illness doesn’t even give me the option of perfection, that I have already had to learn how to be ok with being ‘just good enough’. So what really matters to me? Relationships. Nature. Yoga. Being present in the here and now. Making the most of all the things I am fortunate enough to have in my life because, as chronic illness has taught me, there is no guarantee that those things will still be here tomorrow.

Published on The Mighty

What chronic illness looks like behind closed doors

Many chronic illnesses are described as “invisible illnesses.” Depression, anxiety, chronic fatigue syndrome, Lyme disease, fibromyalgia, autoimmune disease… they all have one thing in common: most of their symptoms are invisible to outsiders.

Like many others with chronic illness, I have become very good at hiding how I really feel. Since I don’t generally walk around with a sign saying, “I have chronic illness,” my friends, family, colleagues and acquaintances (and that miserable lady in the post office who makes me want to cry on a bad day), would be forgiven for thinking I’m perfectly healthy.

Before I got sick, I think I’d have found this concept hard to understand. I’d have assumed that no one could possibly hide how they’re really feeling all the time, and that I’d notice if someone was really that ill. Now, of course, I know different.

When my sickness level is a nine or ten out of 10, I stay at home. I call in sick from work or work from home, I cancel my social plans, and I skip my yoga class. No one sees the really sick version of me. Well, no one except my parents and my boyfriend (lucky them).

When my sickness level is a seven or eight out of 10, I do minimal activities. I might head into the office for a few hours and leave at lunchtime. I might pop to the shop. But that’s about it. I’m likely to do these things with plenty of painkillers, and I’ll avoid speaking to anyone. If I seem quiet or grumpy or stressed, it’s probably just that I’m having a seven or eight kind of day, and I am just about able to make it to the office but I feel too sick for conversation.

When I’m at a five or six sickness level, I’ll do most of my usual activities. I’ll do a whole day at work, I’ll meet my friends for coffee if we’ve made prior arrangements. I do these things feeling very tired, and a little fluey, but it’s manageable and I’m normally able to hold a conversation and keep a smile on my face. Anything below a five on the sickness level is rare, but on the occasional level two/three/four days, I’ll be on top of the world! I’ll be the first one in the office and the last one to leave, I’ll be joking and laughing and making conversation. I’ll be at yoga and then I’ll meet a friend for dinner. I’ll be, for all intents and purposes, normal.

So if you see me and you think I look quite healthy, either it’s a particularly good day, or it is a moderately good day and I am just about holding it together. The true sick version of me rarely shows her face, and if I did, I really think my friends and colleagues would be horrified.

So what does chronic illness really look like? On those days when I wake up and can barely make it out of bed, or when I walk through the front door after a whole day spent in the office wondering how on earth I’m going to make it til 5 p.m… What does it look like, behind closed doors?

There are normally pyjamas, dressing gowns and blankets involved. I will often have my head in my mobile phone or on my laptop, researching this illness, trying to find the right balance of self-educating without causing panic and upset. There will be no makeup, no brushed hair, no nice clothes. There are lots of cups of tea. There may be a nice dinner if I feel able to make something, or if my boyfriend is around to cook, otherwise, there will be takeaway or leftovers or whatever scraps I can find in the fridge. There are few smiles, few jokes, few memories to be made. There are tears. Sometimes there are a couple of tears that can be wiped away and pushed to one side. Sometimes there are inconsolable sobs as the enormity of how terrible I feel and how tired I am of feeling terrible, comes to the forefront.

Behind closed doors, chronic illness is ugly. It is unwashed, undressed, it is grubby. It is lonely and isolating. It is both stressful and boring at the same time. Sometimes I feel like a fraud for writing about how hard chronic illness is, about how sick I feel, because I know that for anyone looking from the outside in, I look like a normal, happy, healthy young woman. Please know that I hide the truth. Please know that looks can be deceiving. Please know that behind closed doors, chronic illness really is an ugly old beast.

 

Originally published on The Mighty:

https://themighty.com/2017/03/what-living-invisible-illness-is-like-what-people-dont-know/

Lyme disease, hope, and the power of privilege

I recently read this story of an Irish man who has made a life-changing recovery from Lyme disease:

http://www.irishtimes.com/news/health/lyme-disease-patient-freakishly-well-after-us-treatment-1.2982020

Full recovery from Lyme disease is something all patients dream of, but for many, months or years of treatment still only result in minor improvements. The fear of failed treatment is something I, and many others, have to battle with every day. I remain hopeful, because hope is the only way illness is bearable. When you get sick with the flu, it sucks and you feel miserable, but you deal with it because you know it will end soon. In chronic illness there is so much uncertainty and unpredictability, and that, for me, is one of the hardest things to deal with. If I feel well today, that doesn’t mean I will feel well tomorrow. But I always hope that tomorrow will be a better day, that next month will be a better month, next year a better year. The lowest and darkest times in my journey with chronic illness have been those times where hope has faded and all I can see is a past, present and future defined by illness. Hope is an essential ingredient for getting through difficult times.

And yet, it is difficult to avoid the sense of impending doom when you read stories of people who are still unwell despite ongoing treatment. I try to avoid spending too much time on those stories because I know it is bad for my wellbeing and ultimately, if I become one of those patients then I will cross that bridge when I come to it, like all the bridges I have crossed before. Nonetheless, when you are caught up in a complex disease you seem to develop a success-story radar. Your nose starts twitching as soon as you get a whiff of an “I’ve recovered” story, because a) it gives you hope, and b) maybe you can learn something that might help with your own quest for recovery.

I approach such stories with an open-minded but cautious curiosity. Sensationalist headlines are all around us and it is hard to work out fact from fiction, especially since everyone has their own agenda. So, I read this news story about the Irish guy with open-mindedness, with cynicism, with curiosity, but also with happiness for him and hope for myself. And then I got to this:

“His family raised the $90,000 cost of treatment and accommodation through an online fund-raising campaign”

Anyone who has ever done any kind of reading or research into Lyme disease knows that successful outcomes are almost entirely reliant on private healthcare. The current NHS treatment guidelines are so unbelievably far behind the latest science that it is truly frightening. I could write an entire essay on that subject (which, as it happens, I’ve been avoiding because I honestly wouldn’t even know where to start). But private healthcare isn’t the full story. Many people will seek private healthcare for many illnesses, for a bunch of different reasons, and so there are private specialists everywhere. But in the whole of the UK there are about four or five private healthcare specialists who treat Lyme disease according to the latest science. In the whole of the UK. I am currently undergoing treatment with the only infectious disease doctor in the UK that I am comfortable seeing, that I believe will offer me treatments with the most chance of success without ripping me off. So, if he cannot help me, the only option left will be to seek treatment abroad.

And this is where Lyme disease discriminates. Those who have no savings and no finances to fall back on have very limited treatment options. Many people with Lyme disease are too sick to work, and have often been ill for some time before being diagnosed. There is one clinic that I know of in the UK that charges very little by private healthcare standards, but you are still talking a hundred pounds or so for a consultation, plus the cost of private prescriptions and travel to the clinic. For people who have very little, a few hundred pounds is an incredible amount of money to try to source.

The next step up is the other small handful of UK clinics that offer more advanced treatment, costing anywhere from a couple of thousand to perhaps £10-15k for a course of treatment. But Lyme disease is a complex illness, especially for those who have been sick for a long time, and there are still no guarantees of a recovery.

The final option is to seek treatment abroad. I know people who have had great success with specialist clinics in Europe, but the clinics with the very best outcomes appear to be in the US. It is hard to estimate how much treatment there would cost since I have not been through it myself, and since every patients’ course of treatment will vary. But you are probably talking a minimum of £10,000 and there really is no top-cap on what you could spend. Some people who do not get better with oral antibiotics have better success with IV antibiotics, which of course requires you to be in constant proximity to a clinic. I have heard of people who have sold their houses and moved their families abroad in order to receive such treatments.

Honestly, if someone told me I would 100% recover and be back to full health if I quit my job, took out a £75000 loan and moved to the US, I think I would do it. But no-one can ever promise a 100% recovery rate, and people are making huge sacrifices for an unknown chance of getting better. And anyway, how on earth would I get a bank to loan me £75k and even if they did how would I ever pay it back?

There are the occasional stories of patients who have recovered from Lyme disease through self-treatment and with very little money, but these stories are few and far between. The vast majority of the success stories seem to be, like the Irish story above, that have enormous financial implications. This might partly be a reporting bias. Perhaps the £75000 recovery stories make much more exciting reading than the £200 recovery stories, so they’re the only stories we hear about. But I know from patient support groups that for Lyme disease patients all over the world, finances are an enormous barrier to getting well and a huge source of strain.

I am very fortunate to have a family who have worked hard and saved hard their entire lives, and who brought me up with the same values. We are by no means rich or well-off, but I know there are many patients in a much worse position than me. The money available to me is not unlimited, but there is enough for me to seek some form of treatment right now. I cannot imagine living with the stress of this illness while knowing the treatment that seems to be helping will have to go on hold because there’s no money left, or having to make the choice between a prescription and food for the week.

So while recovery stories like the one above give me hope for myself and for all of the patients out there who are still suffering and still seeking answers, those stories also fill me with anxiety and sadness. Anxiety because maybe recovery is preserved for those who have £75,000 to spend. And sadness that the hope for a healthy future is limited, like so many other things in life, by the power of privilege.

Holding on to self-identity

I recently watched a TED talk by a lady called Jennifer Brea, who spoke about her experiences of Chronic Fatigue Syndrome/ME. You know that feeling when someone sums up your own experiences so completely that you feel a warm sense of belonging? When those thoughts and feelings that are so complex you can’t even completely make sense of them yourself, are perfectly expressed by someone else and you suddenly realise you are not as alone as you thought you were? That’s how this TED talk made me feel. If you are someone with chronic illness, if you know someone with chronic illness, or if you’re just a human being who’s interested in the experiences of others, please take some time to watch it:

TED Talk Jen Brea: What happens when you have a disease doctors can’t diagnose

She starts the talk by showing what her life used to be like. 28 years old, studying for a PhD, in a loving relationship and enjoying life. I recently attended a conference at which there was a presentation by someone from a CFS treatment centre, who said that many people with CFS share common personality traits: high-achieving, active, introvert and perfectionist. Apparently there is research to support this, although I’ve not read the studies myself. But it’s interesting, because I think my friends and family would probably say I fit that overall description, and from Jennifer’s talk, it sounds like she would too.

I have no idea why this would be. I might speculate that being an introvert and a perfectionist is mentally stressful, and being an active go-getter can be physically stressful, an maybe this puts a strain on the immune system. Or maybe when people who push themselves a little too hard get sick, they don’t rest as much as they should, and the body finds it harder to recover. I don’t know, these are just ideas, and I can think of many other reasons why this might be true.

Nonetheless, it strikes me as ironic that the people who are most likely to develop CFS are those who are least likely to enjoy resting and taking life slowly. Of course, I’m not suggesting for a second that anyone would enjoy chronic fatigue syndrome or any chronic illness, but for those of us who really enjoy being on the go, both physically and mentally, chronic illness is a bit of a slap in the face. And this led me to think about how chronic illness affects our self-identity.

During my good years, I was a very active person. I LOVE exercise. I would even say I get a little addicted to exercise. I used to run two or three times a week, go to various classes at the gym, lift weights and do high intensity interval training. I haven’t done any of these things for about 3 years. Actually that’s a lie. About 6 months ago after a particularly good week I decided to attempt a body pump class. The weights I lifted were about a quarter of what I used to lift two or three times a week during my good years. And yet that one class led to a major crash that took me about a week to recover from. It might sound a bit sad, but I think about body pump all the time. I used to love body pump. It was more than just a gym class. It was a hobby, a social activity, a way to keep fit and feel good about myself. Body pump was a part of my self-identity.

During my good years, I was also a runner. Admittedly, not a very good one. I was never going to make it to the olympics but god damn it, I loved to run. Just before my health really took a turn for the worse, I ran with a wonderful running group in the town where I live. I met some fantastic people. People I still call friends several years since I last ran with them. But still, it’s hard to keep in touch with your ‘running friends’ when you can’t run anymore. Running was a huge part of my life. It was something I did for me, to keep active, to get outside even on the coldest and wettest of days, to stay in touch with nature, and to have a good old chat with my running buddies. Running was a part of my self-identity.

During my good years, I used to love walking. There isn’t much in life that makes me happier than being outside. The beach, the forest, the moors, wherever – if it’s outside, I want to be there. I crave the outdoors. I am lucky that my health doesn’t restrict me as much as it does for many people, and I do still get outdoors sometimes. But it’s hard enough even when you are in good health to find the time and energy to go for a walk, so when you have unpredictable health to add to the list of things that make it difficult, trips to the countryside are a rare treat for me now. Being outdoors makes me feel alive, it makes me feel happiness and joy right down to my bones. Ever since I was a young child I have been an outdoorsey-person. My favourite thing as a kid was to help my Dad out in the garden. Being an outdoorsey person was not just for fun; it was part of my self-identity.

During my good years, I used to love meeting my friends for a drink on a Friday night. Ok, this isn’t exactly the healthiest activity in the world. But sometimes, there’s nothing that hits the spot quite like a glass of wine or two with your friends. A chance to forget about all your worries from the week just gone and the week up ahead, and let your hair down with the people whose company you enjoy most. These days, I really can’t tolerate alcohol. In fact since starting my Lyme disease treatment, I’m not able to drink at all due to drug interactions. I’m not saying I want to be drinking a bottle of wine every night, but it would be nice to have the option once in a while to meet my friends for a few drinks and know that it won’t put me in bed for a week. The freedom to go out for a drink was a right; a choice that was taken away from me. That choice was part of my self-identity.

During my good years, I used to love doing puzzles. I don’t mean picture puzzles like your granny used to do (although those are fun too!). I mean logic puzzles, crosswords, sudoku, brain-teasers. I may have got my love of the outdoors from my Dad, but I definitely got my Mum’s love of numbers. One of the symptoms I find most frustrating now is brain fog. It doesn’t happen all the time, and I definitely don’t get it as badly as many people with Lyme disease do. In fact, I count my lucky stars that I am still able to engage in my work, and it’s mentally challenging work at that. But I do struggle. On my sicker days, I struggle to find words. I know what I want to say in my head, but I can’t get the words out. I struggle to engage in anything mentally challenging and any attempt at an academic conversation has me totally exhausted. I have gotten pretty good at approaching my work flexibly, so that on those bad days I do the more mundane jobs, and I reserve the thinking jobs, the reading, the writing, for the good days. And I’m so fortunate that I have good days. But how I would love to not be restricted mentally, academically, and professionally, by my health. Being a thinker, an academic, a logic puzzle loving nerd; they were part of my self-identity.

I think you get the picture. Chronic illness changes your self-identity. It takes away the things that made you, you. And suddenly, through no choice of your own, you are a different person. I don’t think you really lose your self-identity, but rather, you gain a new self-identity. These days, I spend a lot of time doing crochet in my pyjamas, and honestly, I get a lot of pleasure from that. But if I had the choice, I would much rather be at the gym or going for a jog. Yoga is also a huge part of my life now, and the wonderful thing is that I never take it for granted. Every single time I roll out my yoga mat I am grateful that my body, mind and life circumstances have allowed me to be there. Many are not so lucky.

But if chronic illness changes your self-identity, what happens if you get well? Recovery is something that I think about and dream about every single day and I can’t even begin to describe what I would give to have my health back. And yet, there is anxiety about recovery. Because if I recover, if I am no longer a sick person – who am I? Many of the things that now make up my self-identity will once again be taken away. I won’t have to sit in my pyjamas crocheting a cardigan, but I might choose to. Holy smokes, I will have the choice! That sounds both wonderful and scary at the same time. If I recover, will I return to the running, gym-loving, weight-lifting, puzzle-completing nutcase I once was, or am I now a permanent crocheting, pyjama-loving, in-bed-by-9pm, stone cold sober, sensible person? Have I held on to my self-identity, or have I lost it forever?

 

 

The power of the human body

Time and time again I tell myself “I don’t think I can do that”, and my body proves me wrong.

Those who know me know that yoga is a huge part of my life. It is more than just a hobby, it is a way of life. I highly recommend yoga for anyone with (or without!) chronic illness, because yoga really is accessible to everyone. I will admit that my absolute favourite parts of yoga are the headstands, the handstands and all other things that really challenge me physically. But here’s the thing: yoga isn’t really about the headstands, handstands or any other fancy poses. Yoga means ‘to yoke’; to unite; to join; to connect. It is a process of becoming more aware of who we really are. The poses we typically associate with ‘yoga’ in the West are one way of working towards this, but anything that helps us connect with ourselves is yoga. Therefore, anyone can practice yoga. It doesn’t require physical fitness, it assumes no religious underpinning, and it doesn’t mean you have to pay £8 to attend a class. Sit for 5 minutes focusing on the sensations in your body – yoga. Use techniques to regulate your breath when you feel stressed – yoga. Practice self-compassion, being honest with yourself about what is right for you – yoga. In fact, everything we do could be yoga if we practiced it with full awareness.

For the last couple of years I have dabbled in acroyoga, which combines yoga with acrobatics, working with and supporting other people in pairs or groups. There are a million reasons why I love acroyoga: it appeals to my love of a physical challenge, it pushes me outside my comfort zone, it builds trust and communication, and above all, it is seriously good fun! Around 6 months ago I had a bad patch health-wise, my mental health and motivation suffered, and I stopped practicing acroyoga. Before I knew it, I was out of practice and convinced I wouldn’t be able to do it anymore, and acroyoga was no longer a part of my life.

Just before Christmas, I was having a good week and I bit the bullet and went to my local acroyoga class. I was nervous about going. I really didn’t know what I would be able to manage physically, I had been out of action for so long and I was convinced that I would no longer be able to do the things I used to be able to do, that everyone else would be better than me and that I would have a miserable time (self-pity anyone?!).

Well, how wrong I was! I managed all the poses I could do before, including the one in the picture, which I had actually really struggled to get the hang of when I was practicing regularly, and which I’d only ever successfully done twice before (thanks to my fellow acroyogi for letting me use this picture!). But more than that, I had fun. I instantly reconnected with the wonderful community of acroyogis and I forgot about all my problems. It was the happiest I had felt for a long time.

I honestly cannot believe what my body allowed me to achieve that night, but when I think about it, I really don’t need to be upside down hanging off someone’s legs to realise how powerful my body is. I have been chronically sick for years and yet every day my heart continues to beat, my lungs continue to breath, and my body allows me to live a relatively normal life. Day after day I feel my body struggling just to make it to the end of the day, and yet, after 6 months of inactivity I was still able to do challenging poses and even learn some new poses. I have absolutely no idea how my body does it, but it does. Time and time again I tell myself “I don’t think I can do that”, and my body proves me wrong.

I know that I am fortunate. I know that for many with chronic illness, a good day means making it to the shower. I am lucky that my body allows me to achieve things that for many would feel impossible. But the message is still the same. Chronic illness can feel like a daily battle: me vs body. It can feel like my body is punishing me, fighting me, willing me to give in and just be sick. And then I have moments like that evening at acroyoga, and I am reminded that my body is not fighting me at all. My body is willing me to be well, not sick. Even in my sickest times, my body continues to chug along in the background, waiting patiently for me to be well again. My body is not my enemy, it is my friend.

Should we accept chronic illness?

I’ve always tried to approach chronic illness with positivity. I’ve never really seen the point of moaning, it’s not like it changes anything. At best you wind up feeling irritated and stressed, and at worst you make everyone else around you feel miserable too. Recently I’ve been thinking a lot about positivity and how it relates to acceptance, of chronic illness or of any other difficult situation.

The last few years I’ve increasingly moved towards an attitude of accepting my illness and the limits it places on me. I think my yoga practice has contributed towards this; we are always encouraged in yoga to show self-compassion, to recognise the limits of our body, never comparing ourselves to the person on the mat next to us but instead being happy with where we are on our own journey. I’ve spoken to many people with chronic illness who say that an attitude of acceptance has been crucial to maintaining quality of life, and until recently I think I could say the same for myself.

I read a book a couple of years ago called “How to be sick: A buddhist-inspired guide for the chronically sick and their caregivers”, by Toni Bernhard. It was one of the most positive and uplifting takes on chronic illness I’d ever come across, and had a profound effect on how I looked at my own situation. It helped solidify my desire to live a positive life, free from mumbling and grumbling, focusing on what I could achieve instead of what I couldn’t, and accepting my life exactly as it was, without needing the circumstances to change.

In some respects, I still think that this attitude has many benefits. If our contentment is reliant on the external world, we will never be happy. There is always something to be unhappy about. Sure, some people have it worse than others, and throughout the course of all of our lives we will have times when we have more or less to moan about. But things will never be perfect. Everyone has something in their life that is difficult, and as soon as one problem passes, we find something else to worry about. Taking a positive approach and focusing on what we can achieve in spite of those problems, allows our mental state to be greater than the sum of our external problems.

Recently, however, I’ve started to question whether acceptance can go too far, morphing from a positive zest for life into losing all expectations of ever getting well. And once you lose the expectations of getting well, hopelessness and despair are following not far behind. I’ve just finished a book called “You are the placebo: Making your mind matter” by Joe Dispenza (blog post on that coming up). It’s all about being your own placebo effect through the power of your mind. I know, it sounds like absolute hocus pocus, but the science behind it is fascinating and I’m totally hooked on the idea. Alongside that, I’ve recently had a few sessions with a friend who uses hypnotherapy and psychoneuroimmunology (PNI) with people with chronic illness.

PNI focuses on how the nervous system and immune system interact, thus creating links between mind and health. It utilises simple techniques like meditation, positive mental imagery and hypnosis to focus the brain on ‘wellness’. You remember what it was like when you were well, you picture what it will be like to be well again, and then imagine you already ARE well. PNI has been shown to be effective for a whole host of illnesses from psychosis to hypothyroidism, but it is particularly successful in infectious diseases, which is of huge interest to me given my Lyme disease diagnosis.

And this got me wondering. In order to use the principles of PNI, to convince my brain that I can and will get well, does this not require me to no longer accept my illness? I recently read this fab post from fellow blogger One Mountain at a Time: Why I won’t accept my illness, but I’ll accept the battle. She explains that the dictionary definition of acceptance is “to receive willingly” and “to endure without protest or reaction”, and therefore makes the case that she will not accept her illness, because that would mean no longer fighting it. This really struck a cord with me. For all these years I have been trying to accept my illness because I thought it was the best way to cope. But now, I am not so sure.

Since finding out that I have Lyme disease, I have been filled with a huge fire in my belly. I have a new drive to improve my quality of life, to get well. I do not accept that I will always be a sick person. I do not accept that this is the life I am destined to live. I am absolutely determined that one day I will look back on today and say “wow, remember how sick I was back then?”

But can we both accept the limitations of where we are today, while still being determined to make change for tomorrow? Or is it time to let go of acceptance?

The worst diagnosis of all

A couple of years ago I bought a book called ‘Why can’t I get better’, by Richard Horowitz, and it was all about Lyme Disease. I remember reading it at the time and thinking wow, so much of this sounds familiar. I did some research and quickly discovered that Lyme disease, in its chronic form, is extremely controversial. The NHS in the UK (and the CDC in the US) do not accept that Lyme disease exists as a chronic condition, and the vast majority of doctors work to this effect. In addition, the test that is used in the NHS and in many healthcare services worldwide has notoriously bad sensitivity, meaning it produces a lot of false negatives. There are calls, by researchers and clinicians worldwide, for a new approach to Lyme disease [1 – this is an academic paper, but is only 1 page long and very readable, so I highly encourage everyone to read it!*(see footnote)].

At the time when I read this book, I quickly dismissed the possibility of Lyme disease based entirely on this controversy. Partly I think it was because I thought to myself (naively, I now recognise) that if the NHS doesn’t treat it, it can’t be a real thing. It must be a conspiracy theory and I don’t want to waste my money or time looking into that. And partly I think it was that I just didn’t want the hassle of thinking about something so complex, so put it to the back of my mind.

Fast forward to last month. I had a severe throat infection and after a visit to my GP was prescribed a 10 day course of antibiotics. A few days into the antibiotics, not only had my throat infection cleared, but I felt on top of the world! All of my EBV symptoms completely disappeared. For the first time in years the glands in my neck went down to a normal size. I had so much energy, no sore throat, no headache, no achey joints or muscles, no fever….it was incredible. There’s a funny thing that happens when you are chronically sick. Your level of ‘normal’ changes. You somehow get used to feeling shit all the time. Sometimes you feel a bit shit, sometimes you feel really shit. But always shit. You forget what it’s like to not feel shit and adjust to going about your daily routine feeling this way. Sometimes you even start to question whether you do in fact feel shit – is this just how people feel? Am I just a hypochondriac, or overly sensitive? Chronic illness really messes with your head. So this period of wellness when I was taking the antibiotics last month was like a light had been switched on. “Oh yes, THIS is how it feels to be well!”

Alas, my excitement was short-lived. A few days after the course of antibiotics ended, I came crashing back down to chronic illness earth. All of my EBV symptoms returned and I went back to feeling…. you guessed it, shit. And this was what drew my attention back to Lyme disease. Lyme is a bacterial infection, spread by ticks, and treated with antibiotics. I started doing some digging and once again found so much that made sense to me. Lyme disease suppresses your immune system and can lead to chronic reactivation of viruses like EBV. It can suppress your pituitary gland, the ‘master gland’ that is directly and indirecly responsible for the production of many hormones in the body, including sex hormones. Those who know me or follow my blog will know that my oestrogen and progesterone levels fall within the range for a post-menopausal woman, way below that expected for a 28 year old. Lyme is also said to flare in cycles and many women experience particularly bad symptoms at particular times of their menstrual cycle, which has always been the case for me.

So with all this in mind I decided to get tested. Like many people with chronic illness, I do not have a good relationship with my GP. In fact I don’t even see my NHS GP for anything chronic illness related anymore. Instead I found a private accredited lab that uses a different type of test that has much greater sensitivity and specificity. Yesterday I had the results of those tests back, and it was positive. I have Lyme disease. The one diagnosis I hoped I would never receive. Being caught up in a controversial illness that is so poorly accepted by the UK health service, is not what I ever wanted for myself. For those of us with Lyme (that was a weird thing to write – I am now ‘one of those’), we are pretty much on our own. My next step is to find a doctor, hopefully in the UK but potentially abroad, who recognises Lyme disease in its chronic form and will help support me. The good news in all of this, is that I finally have an underlying explanation for all the problems I have experiened. Chronic EBV never felt like the whole picture. In one of my early blog posts (Relationships, love and infertility) I talked about what sod’s law it was that EBV seems to reactivate when my oestrogen is low, AND that I have chronically low oestrogen. Well, Lyme is an explanation for both of these things.

Nonetheless, there are many emotions associated with this diagnosis. Fear of what lies ahead. Disappointment that I’ve spent so long being ill, fighting the wrong battles and climbing the wrong mountains. Anxiety over the new label attached to my name. Guilt for my loved ones that they too have a new label to consider. But above all, there is huge comfort in the knowledge and understanding I now have, and hope for my future.

 

Reference

[1] Borgermans, L., Perronne, C., Balicer, R., Polasek, O. (2015). Lyme disease: time for a new approach? The British Medical Journal, 351. Available here: http://www.bmj.com/content/351/bmj.h6520

*I have since discovered this paper is sadly not open access so is only available to those who work in academia or related fields – if you would like to read it please let me know and I can send you a copy

Other resources

The art of self-acceptance

When you are living in hope of a different life, you are wasting the one you already have.

The last couple of months have been quite bad for me health-wise. I’ve cut right back on my hobbies and social activities because getting through a day at work is, most of the time, all I can manage. This has meant a huge cut in the amount of time I’ve spent with my friends.

For some reason, socialising is particularly exhausting when I’m unwell. All activities are exhausting to some extent, and pacing is a concept I am finally trying to increasingly bring into my life. I have always been very resistant to the idea of pacing – I don’t WANT to rest, I shouldn’t HAVE to rest, it’s not fair blah blah blah woe is me. But recently I have begun to accept that this is my life. Whether or not it’ll be my life forever, I really don’t know. I sure hope not, but right now this is what I’m dealing with and being able to pace, knowing when to stop and learning where my boundary lies on a particular day, is something I believe will be really important if I want to maintain a reasonable quality of life.

But for reasons I’m not quite sure of, social contact is one of the activities I have to be extra careful with. As a fairly introverted person I think part of it is just that it’s in my nature to find social situations quite tiring. But there definitely seems to be some relationship to chronic illness, and I’ve interestingly read some other blogs that have said similar things. Social interaction is just exhausting when you’re battling poor health.

An extra challenge arises when your health is unpredictable, because social events require plans, and sticking to plans can prove to be very tricky if you don’t know how you’re going to be feeling on any given day. There is nothing much that makes me feel worse than having to cancel on a friend because I’m too sick. Not only do I have the usual disappointment for myself not being able to do something I was looking forward to, but there’s the added guilt of having let your friend down last-minute.

So, much to my sadness, meeting up with friends has taken a bit of a back seat recently. Today I drove past a restaurant where me and one of my close friends like to go, and it made me think of her. She had a very important interview recently and I wasn’t able to offer her help in preparing for it as I had hoped, as I wasn’t very well. I was suddenly hit with a huge wave of guilt that I have really not been much of a friend to her recently. So I sent her a message to say I’m sorry I’ve not been much fun lately. And this was her reply:

“You don’t have to be fun….ever”

Those few small words meant so much to me that I can’t even begin to express it in words. Because, those words imply one thing – acceptance. My friend is accepting me exactly as I am right now. Not as the version of me I wish I could be more often. Not as the healthy me. Not as the fun me, the drunk me, the let’s-go-on-an-adventure me, the I-can-help-you-with-your-interview me. Just me.

I am very fortunate to have a handful of people who show me complete acceptance. My family are wonderful, never expecting anything from me, but giving me infinite love and support. Likewise, my boyfriend has shown me that it’s ok to rest, to take care of myself, even if that means sacrificing fun plans we have made together. And I have several friends who, despite all the times I’ve had to cancel my arrangements with them, have never responded with anything other than “get well soon”.

Self-acceptance is hard for us all at times, but it is especially hard when you crave a life that you cannot live. I long for good health, for my illness to be taken away and to be able to live a life without it. But I think it’s fair to say that for the forseeable future that probably isn’t going to happen. Life is now more about managing it than curing it, and with that comes a longing for all the things I feel I am losing or have already lost. It is a fine balance between acceptance and giving up. I don’t want to give up on the notion that I may achieve good health again one day. But I also don’t want to spend much more of my life wishing for things to be different, because when you are living in hope of a different life, you are wasting the one you already have.

Accepting a situation that you are unhappy with is not easy. Accepting a version of yourself that you wouldn’t choose to be, is not easy. But having total acceptance from the people you care about is one giant step towards self-acceptance.

Grief and chronic illness

Chronic illness is about so much more than the physical illness itself. It seeps into every aspect of your being, slowly making swaps and exchanges in every facet of life until one day, you wonder who you even are anymore.

Since starting this blog, I’ve been surprised at how much I’ve posted about emotions. I’m not a particularly emotional person on the face of it, and I find it hard to express how I’m feeling. But somehow it’s easier to write down how I’m feeling than it is to say it out loud. In fact, my very first blog post was about The emotions of chronic illness.

Today I’ve been thinking a lot about grief. Grief is a funny thing. It’s a strong word that we tend to reserve for the death of a loved one. But really, grief is much broader than that. A relationship break-up – grief for the person you once loved. Moving away – grief for the friendships you’re leaving behind. The beginning of winter – grief over the warm sunshine being lost. Ok, the last one might be stretching it a bit. But I do think that for those of us who get a bit blue at the end of the summer, there is a hint of grief in there.

In chronic illness, grief is a particularly strong emotion, and for me at least, it’s something I struggle with on a very regular basis. As the realisation sets in that your health problems are not going anywhere fast, you have to adjust to a new sense of self-identity, and with that, loss of the person you once were. This is something I find especially difficult because my health fluctuates greatly from day to day, week to week, month to month. This time last year, I was very unwell, doing very little except working and sleeping. This time six months ago, I was in India training to be a yoga teacher. And now, six months on again, I am somewhere in between, but certainly closer to the sick version of me than the healthy version.

I have been reflecting today on my time in India, and looking back on pictures, thinking how strong and healthy I looked. Don’t get me wrong, I was by no means in complete health, and the trip was a huge struggle for me, both physically and mentally. But I did it, I went there, I completed the course and I came home stronger in so many ways. There is absolutely no way I would be able to do that right now. The last month I have had more bad days than good days, and I know my body would not allow me to be working that hard at the moment. In fact, I haven’t been to any of my usual yoga classes for two weeks. That might not sound like a lot, but yoga is a huge part of who I am. It picks me up when I’m feeling knocked down, calms my mind, and reminds me of everything I love about life. So when I am too sick for yoga, I feel like a part of me is missing. And with that, comes grief.

But it’s not just about yoga. I look at my life now and I see only a fraction of the life I once had. So much of it is constrained by illness. I haven’t had a nice evening with a friend for way too long. I haven’t been for a run, or even a gentle jog, for a couple of years. I haven’t been able to scoff a bar of dairy milk for god knows how long and I know, I know, dairy milk is cheap and nasty and mostly sugar but I don’t care what you say, it’s delicious. I reflect on my life now and sometimes I wonder what I am actually achieving. The only thing I really have to be proud of at the moment is my PhD, which I have just started and am really excited about. But even that is filled with anxiety and limitation. Will I be able to keep up with the demands of my workload? Will the stress make me even sicker? Will I even be well enough to see it through?

I look back over my life and I used to feel so proud of who I was, of what I was achieving. I was such a go-getter. No, I still AM a go-getter, but it doesn’t feel like there is much I can actually go and get anymore. The extent of what I am doing, both in my day-to-day life and in the broader picture, is only a fraction of what it used to be. I feel as though my self-identity has totally shifted, and not through any choice of my own. The person I am now is not the person I want to be. Not the person I signed up to be. And I feel grief over the version of me I have lost.

Chronic illness is about so much more than the physical illness itself. It seeps into every aspect of your being, slowly making swaps and exchanges in every facet of life until one day, you wonder who you even are anymore. But, all is not lost. Chronic illness has given me things too, not just taken away. Although it may be hard to convince myself of it sometimes, I know deep down that I am not a lesser person now than I used to be, I am simply a different person. And ultimately, we are all changing every day, whether we like it or not. Perhaps chronic illness just better prepares us for the inevitable losses and gains of life.

When chronic illness rules the world

I’ve just got back from a wonderful few days in the welsh countryside with my lovely man. I hadn’t been feeling well for about a week before we went, but I felt well enough to go and we had planned to mainly do nothing, except a bit of walking if we could, so it seemed like a good idea.

Actually, it was a very good idea. A few days away from the hustle and bustle of life, just the two of us in the middle of nowhere. The chance to switch off from everything was amazing, and I’m so lucky to have opportunities like that. I follow many chronic illness blogs and I know that for many with chronic illness, trips away like that would be absolutely impossible, so I am grateful that I still have some freedom.

Nonetheless, there is, as always, a twinge of sadness that my illness still controls so much of my life. I still felt sick for most of the time we were away, and once in a while it would be nice to just be able to enjoy normal experiences like a trip away without feeling crap. We went for a nice walk, about 5 miles, on our first day there, which was so beautiful, but it definitely tired me out and I felt pretty bad in the evening. I’m such a go-getter, an active person, and I’ve adored the outdoors since I was a little girl. I remember as a small child jumping at the chance to help my Dad in the garden, and I think that love of the outdoors will be a firm part of who I am until the day I die. Nothing much makes me happier than the countryside. So in an ideal world, I would have spent the entire 3 days of our trip outdoors in one form or another.

I look back on who I once was. Many years ago, when my health was in a better place, I would have been up at the crack of dawn, going for a cross-country run, coming back for breakfast before heading out for a 10 mile walk, before heading out for a nice dinner and a few drinks. On this holiday, however, a gentle 5 mile walk was pretty much all I could manage.

Of course, I know that I am lucky I can walk 5 miles. There are many people in the world who are not so fortunate, and there are a multitude of reasons why people can no longer do things they used to once love, of which chronic illness is just one. I know these things, and I remind myself of how lucky I am every day. But sometimes, the sense of loss all gets a little too much and I roll into a big hole of self-pity.

Unfortunately today is one of these days. We were driving back from Wales and we were both feeling a little hungry, so we stopped at a service station to try and grab a snack. My boyfriend found himself a couple of tasty morsels, but there was nothing gluten & dairy free there for me except a packet of rice cakes. I bought the rice cakes. I actually quite like rice cakes, but it wasn’t quite the tasty wholesome brunch I was hoping for, and seeing my boyfriend’s scotch egg (God I LOVE scotch eggs!) was enough to push me into a full-blown wallowing, self-pitying tantrum.

It just feels that illness has taken so much from me, and that packet of rice cakes was all it took for me to reflect on all the things I have lost. Independence, fertility, the ability to pop out for a meal without having to trawl through online menus first, being able to stay up late without worrying how sick it’ll make me the next day, alcohol, cake, waking up for an early-morning run…. etc etc.

I always try my damnedest not to let illness rule my life. Quote from the front page of this blog: ” I do not accept that I should lie back and let Epstein Barr define me”. But sometimes it feels like I am fighting a losing battle. As time goes on I feel like it rules more and more of my life. It is on my mind every second of every day. The first thing I think when I wake up each morning is, how sick do I feel today? The last thing I think when I go to bed at night is, how sick will I be tomorrow? Every single decision I make – career choices, whether to go to yoga class or go home and rest, what to have for dinner, what time to go to bed, whether to make plans with friends – is made with chronic illness in mind. I am so sick of the control it has not only over my body, but my mind, and actually my entire life. I fear that the day is just around the corner when I will be entirely defined by illness. That, if asked to describe me in one sentence, my family and friends would say “she’s the one who’s always sick”.