Lyme disease, mental health & insomnia

Sleep is like health. You don’t realise what a luxury it is until you don’t have it.

The last couple of weeks I have, completely out of the blue, started struggling with insomnia. This is a common problem for people with Lyme disease and yet, somehow, I have always managed to escape it.

Well, not always. When I very first got sick as a teenager, one of my most prominent symptoms was severe depression. I now know this is very common in Lyme disease, but at the time my family and I had no idea why I was suddenly so mentally unwell. Seemingly out of nowhere I went from a happy, healthy child to a very distressed and mentally ill adolescent. Sleep problems are one of the 9 symptoms of depression as defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM) and can present as either a) insomnia or b) hypersomnia (i.e. sleeping too much). For those few years when I was very unwell, I experienced terrible insomnia. I remember being prescribed sleeping pills when I was about 14 years old, and getting high the first time I took them.

The first few years of my illness were dominated by mental health symptoms. I had physical symptoms too, but the mental health problems were severe and impairing on a daily basis. I had a myriad of treatments, from antidepressants to family therapy to counselling. Nothing made any difference whatsoever. Presumably, because none of it was really getting to the crux of the issue (the Lyme disease), although I guess I will never know for sure that the depression I experienced was 100% down to Lyme, and it would be naive of me to say otherwise.

Anyway, fast forward a few years, and as my physical health gradually worsened, my mental health actually improved. I won’t say that I was completely mentally healthy all the time. Firstly, because I really don’t believe anyone is mentally healthy all the time. Secondly, because there were lots of challenges associated with being ill. Dealing with feeling like crap so much of the time, managing a job and relationships, not knowing why I was ill, feeling dismissed and misunderstood by doctors, to name but a few. So yes, I had mental ups and downs and some days were a real struggle. But I didn’t feel depressed. Not in that pit-of-the-stomach, deep within your soul, “I am miserable” way. And so with that, the insomnia lifted.

Over the last 5 or 6 years, while my mental health has remained steady but my physical health has declined, my sleep has been good. I may have experienced the odd sleepless night if there was something particular on my mind, but on the whole, if anything, I slept too much. As is common in people with chronic fatigue and various other chronic illnesses, most nights I felt like I could sleep for 10 hours if I allowed myself, and no matter how much I slept, I woke up feeling exhausted, unrefreshed and a little hungover. I can’t say that’s been fun, but jeesh, it’s better than tossing and turning for hours on end.

The last few weeks, my mood has taken a bit of a dip. I don’t know why, but I know that I am not alone. Just as depression is common in people with Lyme disease, it is especially common while people are being treated for Lyme disease. Neuroinflammation, reduced neurotransmitter production, the stress of going through treatment…there are many hypothesised reasons why this might be. Along with the dip in mood, insomnia has reared its ugly head. And the trouble with insomnia, is that it’s a slippery slope. What starts off as one night of an unexplained inability to drift off, soon becomes worry about having “another night like that” as you become increasingly fixated on the clock and worrying about how many hours you’ll be behind if you fall asleep right this second.

And for those of us with chronic illness, there is an added pressure. We are repeatedly reminded of the importance of getting plenty of sleep to allow the body to rest and recover. My doctor lists sleep as one of the crucial “foundations” that need to be in good order before trying to tackle Lyme disease. If sleep is poor, the body cannot effectively heal, he argues. Makes sense to me, but I’m not sure that having your mind scream “YOU NEED TO BE ASLEEP RIGHT NOW OR YOU’LL NEVER GET BETTER!!” is especially conducive to drifting off into a peaceful sleep.

I had a few nights of taking some over-the-counter sleep meds, but they add an extra nice punch to the usual Lyme disease hangover I wake up with each morning, and I’ve yet to decide which is worse: staying awake all night, or spending an entire day feeling drowsy, irritable and like I had 10 cocktails last night (without the fun of having 10 cocktails). So for tonight, I have accepted my fate of not sleeping and am embracing the opportunity for late-night PhD reading (surprisingly productive), selling some shit on ebay (I have a surprising amount of shit), and of course, writing on my blog (unsurprisingly therapeutic).

Lessons I’ve learned from chronic illness

I have been thinking for a while now about how long it’s been since I last blogged, and how I really should make the time to write something. So I log on to my blog and it tells me it’s been two months since I last posted. Streuth! This blogging business is high maintenance I tell you.

As way of a brief update: I went to Washington DC in May and am currently 6 weeks into treatment. It’s been a bumpy road so far, but I’ve been warned that this is a long treatment plan and to expect a marathon rather than a sprint (hurray, because I had so much fun that time I ran a half-marathon…). My physical health has been very variable, but I must confess that my mental health has been consistently struggling. There you go. I’ve broken the British we-don’t-talk-about-how-we-feel tradition and am laying my cards on the table. Although to be fair, I work in mental health research so if us folk can’t be honest about mental health, we’re all doomed.

I’m not sure why my mental health has taken a turn, but I’m trying not to fixate on it too much. Embracing my inner buddhist, I am reminding myself that a) life involves suffering, and b) our expectations, desires and aversions create a second layer of suffering over and above the initial suffering. In other words, shit happens. But, we add a heap-pile of shit on top of the initial little turd by the way we relate to, and think about, the turd. Sorry for the shit analogy, I didn’t mean for that to happen. The Buddha expresses it much more eloquently:

“When an untaught wordling is touched by a painful (bodily) feeling, he worries and grieves, he laments, beats his breast, weeps and is distraught. He thus experiences two kinds of feelings, a bodily and a mental feeling. It is as if a man were pierced by an arrow and, following the first piercing, he is hit by a second arrow. So that person will experience feelings caused by two arrows.”

So with that in mind, I’ve upped my meditation practice and am focusing simply on trying not to exacerbate the suffering. Along this theme, I’ve found myself thinking a lot lately about all the things I have learned from chronic illness. So here are just a few…

1. Cherish the small things

When life is going well, I feel like we get a bit greedy. We take health, happiness, love etc, for granted. When it’s gone, your baseline level of expectation changes. And so, for example, when you’ve spent the last week in bed, stepping out of the front door and feeling a gentle breeze against your skin, makes you feel so alive. But isn’t it kind of sad that we don’t notice those things until we’re in a bad place? Over the last couple of years I’ve really started paying more attention to the little pleasures, and somehow even the darkest of days can feel a little brighter when you notice the sun shining or the sounds of birds or the kind person who held the door open for you. Cherish the small things, because when the big things aren’t going very well, they can be a surprising source of joy.

2. Keep hold of your real friends and let go of the rest

That old cliché is true, you really do find out who your real friends are in times of adversity. I have to admit that over the years, I have often been surprised by the level of support offered by people I would consider more acquaintances than friends, and the lack of support sometimes offered by those I thought were close friends. Of course, everyone has their own stuff going on and it’s unreasonable to expect any friend to be there for you 24/7, and I also recognise that being chronically ill can tip the balance of friendship somewhat. I, for example, cannot reliably offer any of my friends regular catch-ups over tea, because my ability to meet and do friend stuff relies on it being at least a sort-of-alright health day, and that is difficult to predict from one day to the next. But, my good friends, although I’m sure inconvenienced and perhaps a bit miffed that I can’t always be there, never make me feel guilty for that. They understand, they accept, and they are kind. My university friends, despite only managing to see them once or twice a year, will often send me a “how are you?” text or offer me a real listening ear on the rare occasions we get to meet up. Chronic illness is truly lonely and isolating at times, but having even a small handful of good friends makes everything feel a little less miserable.

3. You are the expert of you

I’m sure there are many medical professionals that would cringe reading this, but frankly I don’t care because it is one of the biggest lessons I have learned in my years of ill health. I don’t care what anyone says, you know when something is really not right in your body. Maybe it doesn’t make sense, maybe medicine has no explanation for it, maybe when you say it out loud you sound totally off your trolley. I don’t care, if it’s happening in your body then only you know what it feels like. There have been so many times over the years when I have tried to explain to a doctor a set of symptoms, or a feeling, or a pattern, and I have been told that what I’m describing is simply not possible, only to later discover through my own reading of the (scientific) literature, that it is, in fact, entirely possible. Doctors don’t know everything. Science doesn’t know everything. That’s what makes science so exciting, there are new things to learn all the time! I was told for years that it was impossible to have severe flu symptoms with every menstrual cycle. For about two years I had the exact same symptoms, at the exact same time, every single month. I knew, 100% without any question whatsoever, that this was linked to my periods one way or another. And the same GP told me month after month, “it is not possible”. Many years later I saw a gynaecologist who agreed it’s unusual but acknowledged, nonetheless, that there was no doubt it was happening. And I now know that menstrual flares are reported anecdotally by thousands of women with Lyme disease. Maybe you haven’t been to medical school, but you have lived with your body every day since you were born, and you know what is normal for you.

4. Be your own advocate

Related to number 3. This has been a hard lesson for me and one I am still working on, because being assertive does not come easily to me. I don’t want confrontation, I don’t want to have to argue my case, I just want to sit quietly in the corner and mind my own business. Working in academia has helped me massively with this, because you always have to justify yourself in science, and sadly, no-one will do the speaking for you. Only you can say what you need. If you’re not getting what you need, there’s no point sitting around being polite about it. The onus is on you, and only you, to create change.

5. Life isn’t a race

When I was younger I used to put so much pressure on myself to achieve, achieve, achieve. I, like many young people I’m sure, was convinced I’d be married with kids and a successful career by the time I was 30. Well I can tell you, 30 is creeping around the corner and I’m not married, am currently unable to have children and am going to be a full-time student until 2019. And I’m chronically ill; the limitations of which I could never have imagined as a child. But I am an infinitely better person now than I was then. I am more patient, more chilled out, more confident, more thankful, less pessimistic, less judgemental. I still have a way to go on all those things and more but that’s exactly the point – life is a journey, not a race to the end. There is no deadline for growth, for change, for learning. You haven’t suddenly made it the day you get married or have a kid or get a promotion or own a house. As soon as you reach one goal you will be thinking about the next in the hope that it will suddenly make things better; make you better. So what’s the point of racing so fast to the next goal that you don’t even stop to enjoy the scenery? Of all the things I have been forced to take note of in recent years, the thing that has changed me the most is simply learning to take it down a notch. As much as it pains me to admit it, I know that when I push too hard, my health suffers. That might be doing too much exercise, not getting enough sleep, having an argument, over-working, or just letting myself get stressed by day-to-day life. Chronic illness has forced me to pay more attention to the warning signs my body provides, and although the limitations of that can be very frustrating, it is also a relief to feel like I have permission not to constantly worry about expectations and achievements.

There are many more things that I have learned from chronic illness. Perhaps I will write a part 2 to this post at some point. When everything feels a bit overwhelming, it can be really helpful to take a step back and look at the bigger picture. For anyone looking in from the outside, my life is far more flawed now than it was 10 years ago, but yet, on the inside, it is so much more fulfilling.

Chronic Illness & Fear of Judgement

I’ve always been a socially anxious person. At the root of social anxiety is a fear of being humiliated, scrutinised or judged. When I was younger, I think I was quite a judgemental person. I was quick to criticise and see the worst in people; other people, as well as myself. As I’m getting older, I am learning how unacceptable and unnecessary it is to judge anybody for anything. We are all just trying to do our best on our individual journeys. Yoga has helped me immensely with this. It teaches me and reminds me, every day, to accept where I am in my own journey, both on and off my yoga mat. And I think that by learning not to judge yourself, you inevitably learn not to judge anyone else.

That said, I am definitely not perfect in this regard and I still sometimes catch myself making an unfair judgement about another person or, more often, about myself. I also still have an incredible fear of being judged by others, and this creeps into almost every element of living a life with chronic illness.

As an example, I have quite a serious phobia of doctors. This stems, I know, from countless appointments with GPs where I have not been treated with the respect or dignity that all patients deserve. Like the time I was told that there was “no way” I could be experiencing the symptoms I described because they were “medically impossible”. The time I was told that I couldn’t be that ill, because I had a boyfriend (apparently really sick people can’t meet members of the opposite sex). Or the time, and this is no word of a lie, I was told to “go to Africa and see starving children if you really want to know what sick is”. These comments are rude, insensitive, unkind and extremely damaging. They are judgemental. Anyone who knows me will know that, like many people with chronic illness, I really don’t exaggerate my symptoms. In fact, I am so afraid of people thinking that I am exaggerating my symptoms, that I massively under-report them. So when I go to the doctor to discuss my illness, I am not being a hypochondriac or a drama queen, I am simply seeking help for symptoms that are having a significant impact on my quality of life.

Despite this, I have been made to feel so stupid, over-the-top and unworthy of a doctor’s time, that I have a serious and significant fear of going to the doctor. As someone with chronic illness, this is a problem. It means that I am not properly monitored. It means that there is no one person who oversees my medical care or knows what treatment I’m having. It means I avoid telling my doctor how I’m really doing. It means that, 8 months after being diagnosed with Lyme disease, and 4 months into treatment, I still haven’t had a single conversation with my GP about it. If something serious happened to me, my medical notes are so out of date that no-one would know how best to treat me. My Lyme disease specialist requires me to have regular blood tests throughout treatment to monitor my liver & kidneys, and I am so afraid of speaking to my GP about it that the thought of even making the appointment is keeping me up at night.

The fear of judgement doesn’t stop at the doctor’s office. I am very private about my health issues and there are very few people who know a lot about it. I am trying to get better at this, because keeping it a secret is very isolating and makes me feel lonely and disconnected a lot of the time. I think it is essential for humans to have connection. Even as a socially anxious person, it is important to have meaningful relationships and to not feel like you have to hide what your life is like. But yet, the thought of sharing the details of my illness and treatment with other people fills me with fear because I have no idea what people will think or say. Sometimes I get snippets of opinions or advice that give a little hint that someone is making a judgement. The sad thing is that I know these people most likely have no intention of judging me and probably don’t even realise they are doing it. They are good people; people I like and respect, but still, the subtle signs of judgement are there.

Like, for example, the person who tells me that they think people with chronic illness should learn to live with their symptoms and not let the search for a diagnosis take over their lives. Or the person who told me how they had learned to live with their own condition (a condition very different, by its nature, to mine), and that I should do the same. Or the person who told me they thought the treatment I was having was very risky and that I should find a different doctor. These may all be valid arguments, and they may be well-meaning. But they have one thing in common: they all contain a “should”.

The word “should” suggests that you are making a judgement. It suggests that you think the person at the receiving end of the “should” needs to be doing things differently, or making different choices. That, if you were in their shoes, you would be doing a better job. I frequently catch myself using the word “should” in my head, and I like to challenge it because it typically means I am judging myself (you should be better than this, you should have done xyz by now, you shouldn’t be getting so upset…). Not only is judging someone unneccessary and potentially harmful, but it is also unfair. How can we possibly say what someone else should or shouldn’t be doing, when we have not lived a single second in their shoes? How can we decide what choices someone should or shouldn’t be making, when we have no idea what life is really like for them, or the struggles they experience each day?

I know that my fear of judgement is something I still need to work on. I know that it stems from social anxiety and a few bad experiences, and I know that there is value in learning how to let go of what other people think. But I also think that we all have a responsibility to catch ourselves when we are being judgemental. To question whether we are really in a position to make that judgement, and to consider what it might be like to walk in someone else’s shoes.

The paradox of being a brain-fogged academic

In the world of academia, I feel like a cognitive tortoise, surrounded by elegant hares.

One of the symptoms I find increasingly challenging to manage, is brain fog. Fellow Lyme disease patients will know exactly what I’m talking about. For those who aren’t so familiar, brain fog feels a little like an alien has invaded your head.

Cognitive processes like thinking and remembering come so naturally to us when our brains are working as they should, that we take it completely for granted. Even I am guilty of this on my good health days. From having complex thought-provoking conversations, to making a shopping list or recalling a story from the day before; when it is easy, it is so easy. Our amazing brains work at incredible speed to help us think, recall, imagine and decide continuously throughout the day without us even noticing. How incredible is that?

And yet, the speed and ease of a well-oiled brain makes it blindingly obvious and excruciatingly painful when the same very brain, the next day or even the next hour, suddenly turns into a pile of mush.

I remember the first time I read about brain fog. I was reading this paper about the prevalence of long-term symptoms in patients previously diagnosed with Lyme disease, so-called ‘Post-Lyme Borreliosis Syndrome’, which I think equates to the term ‘chronic Lyme disease’ often used by patients, the existence of which is painfully denied by many doctors (a complex, confusing and distressing debate that I will save for another day).

I came across this research paper with Forest plots showing the prevalence of persisting symptoms post-Lyme infection. For those who aren’t familiar with Forest plots, they are graphs that show the combined results of multiple studies that all addressed the same question, giving you one overall result from all the previous studies combined. They really are beautiful things. So I was reading this paper, scrolling through the Forest plots of all the different symptoms that had been reported in patients post-Lyme disease. Fatigue was first, no surprises there. Followed by musculoskeletal symptoms like joint pain and muscle aches, again, no real surprises.

And then I scrolled down to this: memory problems, poor concentration, difficulties in formulating ideas, and difficulties in word finding. I nearly jumped out my chair. These were exactly the kinds of problems I had noticed in myself, but I had never really talked to anyone about. Cognitive symptoms, much like fatigue, are so internal and subjective, that it’s hard enough convincing yourself it’s not just all in your head, let alone trying to convince Joe Bloggs or, God forbid, your doctor. So I never spoke about these symptoms because, I’m ashamed to admit, I was afraid of what people would think. Was I really having memory problems, or was I just being a bit forgetful like everyone else? Were those difficulties finding the right words or thinking outside the box really a chronic illness symptom, or was I just having a bit of a dumb day?

When you have unexplained, undiagnosed illness, it really does mess with your head. I have hidden many symptoms purely through fear of not wanting to look like a hypochondriac. If you are trying to convince your doctor that you really do feel terrible and your illness isn’t all in your head, then conversations like “sometimes I can’t think properly” aren’t exactly the best way to go.

So, for years I pushed these cognitive symptoms to one side and convinced myself that they were nothing unusual. And yet this paper showed that all of these symptoms: memory problems, poor concentration, difficulties in formulating ideas, and difficulties in word finding, were reported significantly more frequently in patients who had previously been treated for a Lyme infection, compared to controls with no history of Lyme disease. For the first time I felt like it was ok to admit these were things I struggled with, because the science said I wasn’t alone.

Brain fog is horribly distressing. I will often find myself mid-conversation, in full-flow of a sentence, to suddenly find that I have absolutely no idea what the word is that I want to say next. I know what I want to say. I can picture it in my mind. I am thinking it in my head. But the word is gone. It is as though, suddenly and without warning, my brain has been emptied of all the knowledge I had 30 seconds before. It is unbearably frustrating. Similarly, I often find it impossible to think outside the box, to come up with new ideas, to learn. My brain loses the ability to analyse, to think, to be remotely creative.

These symptoms, on the surface, might sound mildly irritating. But the truth is, they are huge. In the world of academia, I feel like a cognitive tortoise, surrounded by elegant hares. I am constantly doubting myself. Feeling inadequate. Anxious that I might make a fool out of myself at any given moment. And not only that, but it is exhausting. The energy and effort it can take to perform a task that, on a good day, would be completely effortless, means there is little energy left for anything else.

I always try to end my blog posts on a positive note. Like a lesson learned, or a silver-lining to take away. But the truth is, I don’t know how else to end this post other than by saying: brain fog sucks.

 

 

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?

 

 

My homemade handwash

Last month I wrote about my quest for a more natural lifestyle, free from nasty products known to cause harm, and I shared the recipe for my homemade deodorant. I was super excited when several people got in touch to say they were going to give it a go. To be fair, I am pretty easily pleased. Any reaction to homemade products besides an eye-roll, a raised eyebrow, or that look that subtly says “oh, you’re one of those”, and my day is made.

When I first started dabbling in homemade products I really had no idea what I was letting myself in for. It started on a bit of a whim. I’d stumbled across a blog post discussing the potential harms of ingredients in commercial deodorant, and recommending a homemade alternative. It sounded kind of crazy, but it also sounded kind of fun. Making homemade products is a bit like baking: you find a recipe, whip out your measuring spoons and off you go. Much like when I bake, I’m not very good at sticking to recipes. I like the idea of a recipe. A neat and tidy list perfectly packaged and ready to go. Oh how I love a good list. Nearly as much as my Dad, who has even been known to keep a list of lists. Amazing. But after a few attempts I inevitably run out of some vital ingredient and in my typical slapdash, bull-in-a-china-shop approach to life, I chuck in some other random ingredients and hope for the best. Needless to say, there have been many, many failed attempts along the way. But what fun is life if things always go right?

So I started making homemade products because it sounded kind of fun and I probably had nothing better to do one sunday afternoon. But a funny thing happens when you start living a natural lifestyle. It is oh so addictive! There is always more to learn, more to research, another recipe to attempt, and before you know it you are well on your way down the one-way road to hippydom.

I am still experimenting with lots of new recipes, including washing powder (which is super easy by the way), and even…..holds breath and hopes no-one judgy is reading….toothpaste! But given my ‘chuck it all in and hope for the best’ approach I couldn’t possibly share my haphazard experiments with you. Instead, here is one of my long-term favourites. My homemade handwash.

Makes about 450ml; not to teach your granny to suck eggs or anything, but if you want to make less, use less.

Ingredients

  • 250ml water
  • 60ml liquid castile soap. I like Dr Bronner’s but there are other brands too.
  • 25ml oil (jojoba, avocado, sweet almond, or even plain old olive oil)
  • 30ml honey – if you’re vegan or don’t have honey, you can leave it out and add a little extra oil
  • 1 tsp xantham gum
  • 20 drops of essential oils of your choice (optional)

To make

  1. In a blender combine the water, oil, honey, xantham gum and essential oils.
  2. Add the castile soap and pulse for a few seconds – castile soap is, well, soap, so if you put this in at step 1 you will end up with a big foamy mess.
  3. Pour into a bottle. You can spend lots of money on a posh soap dispenser or if you’re frugal like me (read: cheapskate), just reuse an old soap bottle when you’re done with  it.

 

 

 

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.