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.

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?

My go-to homemade deodorant

I recently posted about my quest for a natural lifestyle, free from as many harsh ingredients as possible. I’ve always been very sensitive to commercial products. I have countless memories throughout my life of allergic reactions to various products. Like the time my eyes swelled almost completely shut after having makeup applied for a dance show when I was about 7. Or walking around London on a sweltering hot summer’s day aged 12 with the most unbearable itchy rash (the kind where it’s ALL you can think about) from a plaster I had worn the day before. To the beginning of this year, aged 27, when my face and neck broke out in a hives-like rash from using a particular brand of washing powder.

I find it kind of weird how, in our 21st century lives, these sorts of immune reactions have become something fairly unimportant, benign even. How many people just take an antihistamine or buy some cream when they get a skin reaction, hoping it’ll go away and not really worrying about what’s causing it? I know I was certainly guilty of that in the past. Use product – get rash – use another product to hide rash – repeat. But as I get older, and as I care more and more about truly looking after my body, these sorts of things really bother me. A rash is one way my body can tell me it’s not very happy with what I’m doing, and since I’m never going to get another body, it probably makes sense to pay attention to it.

There is a principle in yoga called Ahimsa, which roughly translated means “not to injure”. It is a core principle of yoga philosophy: non-violence, to any living beings. I remember my yoga teacher saying that Ahimsa begins within. First, do no harm to yourself. I feel like this is a principle that we have lost sight of in our fast-paced, hectic Western lives. We do whatever is cheapest, quickest and most convenient, rather than what is best for us. Fast food, 30 minutes on the treadmill, big brands at the supermarket, and pre-packaged toiletries full of nasties.

But the truth is, natural alternatives really don’t have to break the bank or take hours to prepare. And what’s more – they actually work! One of the first things I made when I started making my own products was deodorant. It is probably one of the quickest and most effective homemade products I’ve tried, so I thought it’d be a good one to share.

Off-the-shelf deodorant or antipersperant typically contains a whole host of ingredients with potentially damaging effects on the human body. As an example, the SkinDeep website shows that a Sure anti-persperant contains ingredients that studies have shown are associated with cancer, skin irritation, lung irritation, harm to unborn babies, hormone disruption, and many other things. My homemade deodorant contains 3 ingredients, all of which score a 1 (the lowest risk rating) on SkinDeep, and which, as far as I’m aware, have no evidence of any harmful effects at all.

Deodorant feels like quite a risky recipe to be the first to share on my blog. It’s pretty full-on hippy isn’t it, making your own deodorant? Plus, it’s not necessarily the kind of thing you want to experiment with. You have a bodged bottle of body wash or moisturiser and it’s really not the end of the world, but let’s face it, no-one wants to walk around smelling of BO.

I hear you. I was so sceptical that homemade deodorant could possibly do anything for my pits, that for the first two weeks of using it I carried my old deodorant around in my handbag, just in case I suddenly started smelling. But I have been using it for over a year now and can honestly say it is more effective than any shop-bought deodorant I’ve ever used, including the old brand I used to swear by that claims to prevent odours for up to 48 hours.

So here it is, my homemade deodorant!

Ingredients

  • 2 1/2 tablespoons coconut oil
  • 2 tablespoons bicarbonate of soda
  • 2 tablespoons cornflour or arrowroot powder
  • Optional: 5-10 drops of essential oils (*see below for my favourites).

Method

    • Put the coconut oil in a small bowl and mash it up with the back of a spoon. Don’t melt in the microwave because it’ll reduce the effectiveness of the deodorant (I have no idea why this would be, but just trust me on this one…!)
    • Add the bicarbonate of soda and cornflour/arrowroot, and mix until you have a thick paste.
    • If desired, add a few drops of essential oils. My favourites are tea tree and peppermint oil because they have a fresh, clean scent, as well as having antibacterial & antifungal properties . I also often use citronella, which is a natural deodoriser.

Put the paste into a jar or container of some description. When you want to use, take a pea-sized blob and rub it into each underarm.

Voila! No stinky pits. If you try this out, let me know how you get on!

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 mind/body dichotomy

I have a long-standing interest in the relationship between the mind and the body. A lot of my life history has drawn me towards it: my psychology degree taught me all about the theory of the mind, chronic illness has taught me how the mind can negatively affect the body (I often experience flares when I am stressed or sleep-deprived, for example), and my yoga practice has shown me the amazing things we can achieve when the mind and body work together in harmony.

But the thing is, the very concept of mind/body bothers me, and the more I think about it, the more confused I get. Where does the mind stop and the body begin? How can we possibly separate them out into two entities that can be described and studied without consideration to the other? Is there even any value in having these two distinct words; what do we gain by treating them separately?

I have recently been studying some of the medical literature about the relationship between physical symptoms and mental ill health, and what stands out for me is that even the experts on this topic, in the Western world at least, treat them as two separate ‘things’. Take for example, this study on the use of psychological interventions for people with emotional disorders and chronic illness. The very first line of the paper says: “Emotional disorder associated with physical illness falls into two main groups: psychological reaction to physical illness and somatic presentation of psychological disorder.” So either a) you have a physical illness and it makes you depressed/anxious etc, OR b) you have a mental illness that just happens to express itself as physical symptoms like tummy aches. But how valid is this distinction, and how useful is it to think about these relationships in such a linear fashion (i.e. A causes B)?

Could we not say, instead, that health is just health, and we all fall on a health continuum ranging from very poor to very good? Anyone who’s ever had depression will know that it can make you feel absolutely terrible physically – you might feel exhausted even though you get 10 hours of sleep every night, you might have constant headaches or migraines, or you might be picking up every bug going around. And anyone who’s ever had a chronic illness will most likely have felt pretty shit mentally at times, because feeling lousy for extended periods of time really does start to drag you down after a while, no matter how good your coping mechanisms. In fact, even an acute illness like the flu can really mess with your head, because as much as the idea of lying in bed all day sounds delightful when you don’t get to do it very often, once you’re forced into it you quickly start to feel like you’re in prison.

I’ve had times in my life where mental illness was my primary health concern and my only diagnosis, and I’ve had other times where my physical health was in a very poor state but my mental health was, all things considered, pretty good. But how much did those diagnoses of ‘mental health problem’ and ‘physical health problem’ really help me? In fact, I think these categories can actually be quite damaging, both for the individual and for our progress in understanding disease. Because the very presence of this mind/body dichotomy means that when a doctor suggests a psychological treatment, it immediately sends a message to the patient that this problem is all in their head. And I know both from personal experience and from the experiences of others with chronic illness, that this can make you feel disbelieved; that you have to somehow defend the physical nature of your illness.

But this attitude means that people who could be benefitting from psychological support are not getting it, because to accept psychological help means you are admitting defeat – if this is in my head, then it cannot be physical. Likewise, I think that having a diagnosis of a mental illness can make medical professionals very quick to discount anything other than that mental illness as a cause of problematic symptoms, adding to the cycle of feeling disbelieved and unsupported.

I dream of a world where this mind/body distinction is a thing of the past. Where we all recognise that the mind and body are intertwined, so much so that we talk about them as one entity without even realising that’s what we’re doing. Where there is no shame in accepting that the way feel in our heads might be affecting the way we feel physically, or vice versa. Scientists don’t know it all, and just because something is widely accepted by very clever people, it doesn’t mean that it is the most helpful way to think about things, or even that it is true. Didn’t the brightest minds in the world once believe that the earth was flat?