How chronic illness affects everything… yes, everything

Recently, I have been feeling a little disconnected from the world. There is so much about chronic illness that anyone without chronic health issues would struggle to understand, that I find it difficult to really, truly connect with people. I know that I can’t expect anyone without chronic health issues to understand. I also know that even by talking (and writing) about how chronic illness affects everything, I may be creating further barriers between you versus me; us versus them; healthy versus sick. But I am ok with that, because this message needs to be heard.

Chronic illness affects EVERYTHING. I mean, absolutely everything. Before I had health issues, I could never have comprehended the scale of it. I could have understood that it must be crap to feel ill all the time, that it must take a toll on your mental health and your ability to do the things that you enjoy. I think that most people can understand that. But the day-to-day impact of chronic illness is unimaginable. This message is so important. It is important for others with chronic illness to hear this – it is hard, and I hear you my friends. But it is also important for those without chronic illness to hear this – the magnitude of chronic illness is immense and so, if your friends who are sick seem to be struggling under the weight of it all, this might just be why.

Ok here are the things I can think of, off the top of my head, that are affected by chronic illness (for me). Some are pretty obvious. Others are darn right peculiar.

  • The beauty products I buy – must be organic with no parabens, SLS, phthalates, silicones etc. The skin is the largest organ in the body (at least that’s what we were taught at school – is that really true?). Well anyway, we have a lot of skin, and what you put on your skin is absorbed into your blood stream. I actually think that everyone should avoid standard off-the-shelf makeup and toiletries but, if you have pre-existing medical issues this is perhaps even more important. This means a limited number of shops I can get these products at and of course, they are a lot more expensive. The most painful product for me is suncream. Holy moly, non-toxic suncream is expensive!!
  • The jobs that I can apply for. This one I am really feeling of late. I am coming to the end of my PhD, and, like most PhD students, I am freaking out a little bit about what I’m going to do next. But, unlike most PhD students, I need a job that has flexible hours, the ability to work from home, a boss that supports those things, and where I can spend a decent chunk of my work time doing things like writing or reading, that don’t require communication or travel or other things that are very energy-zapping for me.
  • The dental work that I have done. Yes, seriously. I had a tooth extracted and a bridge in its place last year, when my dentist just wanted me to redo a root canal. Alas, root canals can apparently (mostly anecdotally) cause issues for people with chronic health issues and to be honest, whether that’s true or total beloney it doesn’t really matter; if there’s a risk of it making my health issues worse, I can’t do it. So, yeah, tooth extracted.
  • What I do in my spare time. Well yes that’s an obvious one. Mostly my spare time is spent doing restful activities like reading and watching tv, combined with gentle exercise when I can manage (I.e. walking), self-educating about all things health related (you would not believe the random shit I know), and cooking. Because everything has to be home cooked from scratch.
  • Where we go for dinner. On the subject of food, there are now, I think 3 restaurants where we can comfortably eat without it being an incredibly stressful experience. Places that have a flexible menu and staff that are patient and understanding enough to deal with “I’d like this meal but without the chips, without the sauce, without the bread, and with a salad on the side please!” Every now and then, if it’s a special occasion, I will eat at a restaurant that I don’t deem “safe”, but I will pay some heavy consequences afterwards.
  • Where we buy our food shopping. We have two stipulations: 1) we have to be able to order home delivery, because the odds of me being well enough to manage a supermarket trip are not that great (so that rules out the cheap supermarkets); 2) they have to have a good selection of organic meat and vegetables, because that is essentially all we eat.
  • What food we buy. No ready meals, pizzas or chips here. There is virtually nothing we can eat that is easy. Everything is cooked from scratch. Even things like gluten free bread are so full of crap that I don’t really want to touch it, plus they normally have either rice flour or potato starch and I can’t tolerate rice or potatoes so… yeah.
  • What time I go to bed. Because I need 9 hours of sleep and even a couple of nights without it starts to affect me. 9pm is my bedtime, by the way.
  • What time I get up. Because meditating in the morning is really not optional if I want to try and keep my nervous system calm, which, of course is important for healing. And because rushing to get ready is about the worst thing for anyone’s nervous system. My morning routine is 2 hours long.
  • How often I see my friends. Not very often, in case you were wondering. When I am well enough, and when I have had a good enough patch of health that I am at least partly on top of housework and other life commitments. Or I’m so unwell that I’ve given up all hope of housework or other commitments, and I have a friend that is kind enough to come see me even though I’ll be in bed the whole time (I currently have one friend who will do this – I hope she is reading, she is a gem).
  • Who my friends are – people who I like and who like me but who are also patient and understanding, and know that plans are likely to be cancelled last minute at least 50% of the time. Many of my closest friends now are people that I have met and communicate with online, rather than in-person. I really value the internet and the social opportunities it provides for so many people who would otherwise be very isolated.
  • Our sex life. Sorry to the prudes reading this but, yeah, chronic illness affects this shit.
  • How we use our holiday leave. Most of our annual leave is used on doctors appointments. I am lucky I have a flexible job so that my routine appointments don’t need to involve official leave. But the bigger appointments require annual leave, and our holiday savings have been used on medical trips in the past.
  • Where we can travel. Somewhere where there are restaurants that cater for complex dietary needs; somewhere where everything is within a short walking distance; somewhere where we can take a small suitcase worth of medical stuff. Hence why next year we will be revisiting our favourite Greek spot that ticks all of these boxes!
  • The books I buy. This isn’t a bad thing by any means – I looooove books! But mostly they are health related books (which also isn’t a bad thing in my eyes – I love to learn about the body!).
  • The house we purchased – we were previously renting a mouldy house, which can have hugely detrimental health effects, particularly for people with pre-existing health issues, and for approximately 25% of the population who have genetic mutations that prevent them being able to effectively detox mould spores. We were so worried about mould exposure that we bought a new build, almost exclusively for this reason.
  • The arguments we have as a couple. Our relationship is pretty solid and I think my love will agree that chronic illness has made us infinitely stronger, both individually and as a couple. But oh Christ it is so hard on a relationship. He has to pick up more chores when I’m sick; I feel guilty when I can’t do stuff; he feels sad and stressed when I’m ill; I feel sad and stressed when I’m ill; we have to try and support each other while both struggling to cope ourselves. To every couple out there affected by chronic illness, I salute you.
  • How we spend our sundays. About half of our Sunday is spent food prepping for the week. Lunches, snacks and sometimes breakfasts. Because nothing can be bought on the go.
  • Our financial situation. This is largely unspoken about in the chronic illness world, or maybe just in the world generally. But I have no shame in saying, that we spend a fortune on stuff relating to health. Mostly food, because of all the reasons above. But also – beauty products (that darn suncream), supplements, having a cleaner (which, I appreciate, might seem like a luxury, but is actually a necessity), buying random things like water filters and paying for dental extractions! And these are just the day to day costs. We get substantial support with my treatment costs, which is the only reason we can afford the treatments I am having.

The magnitude of chronic illness is unthinkable. To those of you reading this who also are affected by chronic illness, I hope you understand that you are not alone. Keep going you brave, brave warriors. To those of you reading who are not affected by chronic illness, thank you for reading! Thank you for taking an interest. And thank you to those of you who provide support to me or to anyone else with a chronic illness. We could not do it without you.

Taking ownership of my own health

I am delighted to present to you all a guest post from fellow scientist, Lyme patient, and dear friend Niamh. In this post she discusses the challenges, as a scientist, of moving away from allopathic medicine in her quest for health and healing.

Niamh is a passionate researcher, writer and soul searcher. She seeks to impart greater understanding of chronic illness and to defy the social stigma which surrounds it.

You can find out more at her website: lymesoul. Enjoy!

A Change in Perspective

​As a scientist, I have always been highly sceptical of any kind of alternative or “holistic” treatment. As a chemist, I have huge faith in the efficacy of pharmaceuticals and, before reaching a life-altering juncture in my illness, my life plan was to design therapeutic drugs. I had been lucky for most of my life to reside on one side of the fence: a far-removed world of Molecule Construction, seeking out new and fabulous structures which could modulate a specific biological response. My mind was occupied with the purely academic side of “making a difference” and gaining recognition in something which might just wipe out some uncontroversial, life-altering disease.  The notion of illness was just that: a notion. A concept which I could conceive of on a purely intellectual basis. I had never felt first-hand the dramatic effects of a life-threatening disease; more specifically, I had never even considered the effects of grappling with an illness for which there was no known cure, little recognition from the established medical community, and consequently little respect for the suffering patient. When Lyme disease shattered my life, or so I believed, I saw only darkness: I was reminded each day of everything I had lost, from my mobility to my own cognitive function and ability to process information. Lyme chose rather indiscriminately and did not care one iota that I was a scientist or that I had a solid life plan. And just like that, I was standing on the other side of the fence, no longer capable of operating in the world of Molecule Construction, feeling utterly abandoned by our allopathic medical community. Just like that, I experienced for the first time in my life, the devastation that disease wreaks; I was the patient for whom I had once aspired to design a life-saving treatment. But now and for the rest of my life, this will no longer be a concept, but rather an earth-shattering reality. It takes time to readjust and to reorient oneself when one has completely lost one’s balance; but I no longer view my disease solely within the context of lack. In fact, there is one truth which I know in the very fibres of my being, a reality which I will own forever:

I will never stop being a scientist.

This disease may slow my path or set obstacles along the way. It may not present a smooth thoroughfare, but my progress will not be impeded. And now, thanks to Lyme, I have experience of both sides of the fence. Now, I feel blessed to know first-hand what it is like to reside in the world of Molecule Construction and in the world of the disabled patient. The difference between then and now is that today I am imbued with an even stronger desire to relieve the pain of those who suffer, often without hope, without a cure for their disease, and without medical recognition. This is not something which Lyme disease robbed from me. This is a gift.

Alternative Approaches to Lyme Disease Treatment 

This new chapter of my life has been somewhat transformative through the empowerment associated with claiming ownership of my own body and its intrinsic capacity to heal. Over the course of ten months, I tried everything within my reach to combat this disease, ultimately discovering the power of a more holistic, naturopathic approach to treatment.

My initial decision was to undertake a treatment protocol which relied heavily upon pharmaceuticals, primarily antibiotics, prescribed by one of the most well-established Lyme specialists in the United States. During this three month period, I deteriorated significantly to the point where I was bed-bound and unable to perform daily tasks. Following a brief period of hospitalisation, during which the complete lack of knowledge surrounding my disease became excruciatingly apparent, I made the radical decision to terminate all pharmaceutical treatments and to seek alternative methods for restoring my health. At this point, the lowest point in my illness, I spent my days researching chronic Lyme disease and any treatments which might potentially provide relief. My research brought me to the Hero and Heroine of my story thus far: Stephen Harrod Buhner, an herbalist specialising in Lyme disease treatment, and Dr Terry Wahls, a physician who reversed her diagnosis of secondary progressive multiple sclerosis through the development of her own targeted nutritional programme  (The Wahls Protocol).

An excellent account by Dr Terry Wahls on how she achieved recovery and the resetting of damaged mitochondria through diet: Minding Your Mitochrondria

Another three months passed by, during which I devoted myself to the self-administration of a tailored Buhner-inspired herbal protocol, in combination with a radical Wahls-inspired nutritional programme designed to reverse immune dysfunction.

During this time, I have observed dramatic improvements in both my physical and mental capacities, I have transitioned from being virtually bed-bound and severely underweight to gaining sufficient strength and stamina to leave the house quite regularly. I have a long journey to full restoration, but I owe these improvements to embracing a new healing paradigm, an approach which might once have confounded me as a scientist. In the absence of knowledge and support of my disease from the allopathic medical community, I have taken ownership of my own body, my own healthcare, and my own intuitive capacity. If there is one thing this journey has taught me so far, it is this:

You know your body better than anyone on the outside.

If you self-educate and become an expert in listening to and hearing your own body’s cues, I am beginning to discover that you can heal physiological damage on a cellular level. For example, I am intrigued by the concept of restoring diminished mitochondrial efficiency using food as medicine, and am enjoying the benefits of increased energy through strict adherence to a ketogenic diet. As scientists, I believe strongly that we must remain open-minded, being willing to make an informed judgement based on empirical results as opposed to being trapped by certain preconceived logic.

​I hope to share more of my experiences relating to herbal medicines and the Wahls-inspired ketogenic diet, but in the meantime, I feel privileged and inspired when others share with me their experiences of becoming executives in the provision of their own healthcare.  Don’t hesitate to contact me…

 

Healing from chronic illness: from full-time job to full-time life

Healing from chronic illness takes a lot of work. It takes time, research, and a whole lot of patience (transferable skills thank you very much!). Let’s take today as an example. It is Friday morning. I have a long list of things I need to do for my “actual” job (aka a full-time PhD). But I woke up this morning and decided that I needed to do some detoxing. This is very important for most people with chronic illness, but especially so when you are killing off infections such as Lyme because killing infection releases toxins into the body, often at a rate faster than the body is able to process and remove. So, detoxing is important, but it’s also time consuming. One of my preferred methods of detox is to take an Epsom salt bath, which I try and do at least a couple of times a week.

So this morning, Friday morning, I decide to take an Epsom salt bath. There’s not much you can to do be productive while you are in the bath so I decided to read my book while I was in there. I am currently reading Radical Remission by Kelly A Turner. Sidetrack – this book is amazing and I highly recommend it. Kelly is a researcher who, for her PhD, interviewed people who had had “radical remission” from cancer diagnoses that had very poor prognoses. She asked people to talk about the factors they thought contributed to their remission, and the book describes the top nine factors that people described. It is specific to cancer but honestly I think healing is healing, and the book is very relevant to anyone who is struggling with their health. Even if you don’t struggle with your health, it’s an interesting read.

So yes, I am in the bath reading my book, and both of these activities are related to my health. If I hadn’t struggled with chronic illness I wouldn’t be doing either of these things.

Then I get a message from a friend asking if I would like to join her for a dog walk at lunchtime. And I think it through. That PhD to-do list isn’t getting any shorter while I lie there in the bath reading my book, and it isn’t going to get any shorter if I go for a walk either. So I consider saying no. But, I haven’t moved my body much recently and that isn’t good for anyone’s health. Walking is one of my preferred forms of exercise because it is gentle enough not to over-stimulate my sensitive nervous system, it gets me outdoors in nature breathing in fresh air, and it helps to stimulate lymph flow which is good for the immune system. Plus, I get to socialise and have some time with dogs which is probably one of the best things for my health (I mean, I literally want to cuddle dogs All. Day. Long.) So I weigh it all up. In the short-term, it is best for my PhD if I say no to the dog walk, but best for my health if I say yes. A contradiction that in times gone by would have caused me a lot of stress. But really, it is a no-brainier, because when I am healthy and strong I am able to work much more productively on my PhD anyway, and I can always spend Friday evening catching up if I feel able to. So in actual fact, by taking time out to do what is good for my health, I am also doing what is good for my work and home-life too.

I say yes to the dog walk.

And I am lying there, still in the bath, reflecting on how it will probably be about half of my Friday taken up by a bath and a dog walk – things I am doing for my health. And a year ago this would have freaked me out. How can I ever have a normal life if I have to take half the time out of my working day just to support my health? It’s so unfair that I have to spend so much of my time doing things related to my health when most people would be able to do whatever the hell they wanted with their time without having to consider their health. For all the normal people out there (whatever is a “normal” person anyway?!) health is just a given and not something they have to consider when they weigh up every single decision in their day. How on earth can one person cope with chronic illness when it is basically a full-time job, on top of an actual full time job and all the responsibilities at home and in the maintenance of relationships with partners/friends/family?

That’s what the old me would have thought. And the thoughts are right there at the surface so I could easily go back to that place of feeling overwhelmed and like a victim and how it’s all so unfair, this full-time job of having chronic illness.

But then the realisation hits me that this no longer feels like a full time job any more. I can’t WAIT to join my friend for a dog walk, and I am loving this bath. How lucky I am to lie here for half an hour in the warmth and read this book which is so fascinating and inspiring. And if I’d never have struggled with my health I wouldn’t be doing these things. I wouldn’t be prioritising what is good for my body and my mind and my soul. I wouldn’t have learned that health is so precious because like we all do when we are healthy, I’d be taking it for granted.

And I realise that this isn’t a full time job for me any more. It is just my life. I choose to take a bath because I know that it helps to support my body in the healing process; I choose this book because it is totally fascinating to me and maybe I can learn something from these stories; I choose to walk with my friend because I know that it will nourish my mind and my body.

Allowing my body to heal and striving to be truly healthy for the rest of my life, is not a job. It’s not something I have to feel like a victim for or that I need to wish was different somehow. Wanting the very best for this precious body of mine is just how life is now. Prioritising health is my life. And what a beautiful life that is.

Detaching from the identity of chronic illness

Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin.

I attended a yoga workshop today, where the underlying theme was opening the heart and letting go of that which no longer serves you. It ticked all the right boxes of where I am in my life at the moment, and I left feeling lighter, calmer and at peace with the world. In case you didn’t know: I love yoga.

As I was lying there in meditation, we were invited to let go of the things in our life that we no longer need to hold on to, and I realised that for me, that thing is illness. For those of you reading this post who also experience chronic illness, I suspect this will make a lot of sense, but for those of you who are generally fit and healthy, it may sound pretty bizarre. But chronic illness is so much more than just being chronically ill.  When you experience the same pattern of symptoms repeatedly over many months, years, or even decades, those symptoms become the very essence of your existence. Long-term illness creeps its way into every single aspect of your life: work, home, relationships, hobbies, diet, bedtime routine, the list goes on and on. Every decision you make, and I mean every decision, has chronic illness behind it. It’s like a constant parrot on your shoulder that you can never get rid of. Chronic illness becomes a part of your identity. Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin. And not only that, but all of the thoughts, beliefs and emotions that come along with those symptoms, become part of your identity too.

Up until very recently, these were some of the thoughts I experienced on an almost daily basis:

  • Oh no, these symptoms again, I can’t cope with this
  • How much longer is this going to go on for?
  • Will I ever get better?
  • I’m going to have to cancel my plans again, what if “insert friend’s name here” gets pissed off?
  • YAY, I feel good today. Oh wait, how long is it going to last?
  • Maybe if I just meditated more/took this supplement/lived off of ice cubes, I might get better

Etc, etc, etc.

In addition to my US treatment for Lyme disease, I recently added a “brain retraining” programme for CFS/ME into my recovery. Sounds a bit nuts, and I don’t want to go into details of this just yet, as it’s early days and I’m still working out what I think about it all. But without question, it is helping. The focus of this programme is to calm the nervous system, in two main ways: 1) directly through meditation, deep breathing and stress management, and 2) by reducing attention (read: obsession) on symptoms, illness, and all the kinds of thoughts listed above. Amongst other things, it involves redirecting focus away from negative thoughts, beliefs and images, to more positive, empowering ones.

For the first couple of weeks, it was hard-going. The negative thoughts were pretty much constant. Any time I stood up, sat down, got in the car, noticed a symptom, noticed a lack of symptom…basically any time I so much as took a breath, a thought or image related to chronic illness would crop up. It was really quite eye-opening to start paying attention to these thoughts, not running from them or trying to push them away, but just noticing they were there, accepting their presence, and then calmly redirecting my attention. It made me realise just how much illness has become ingrained in my entire existence; my self-identity. And the trouble with this, is that it is a self-perpetuating cycle. How can you get better when you are constantly telling yourself, without even realising, that you and this illness are one?

But after those difficult first couple of weeks, changes started to happen. The thoughts were cropping up a little less, and my brain was automatically picking the positive images over the negative ones. Don’t get me wrong, the thoughts are still there. They’ve been there for about ten years so I guess they’re not going to go away overnight. But when I wake up in the morning, my first thought is no longer “am I feeling sick today?”. When I make plans for next week, I’m no longer assuming that there’s a good chance I won’t be well enough. Of course, I know that realistically, there is still a good chance I won’t be well enough, but I am no longer stressing, obsessing and expecting the worst. I imagine health. I picture energy. I believe, deep down in my soul, that I am on the road to recovery. And that may happen next month, it may happen in a year – it doesn’t really matter. I am no longer attached to a timeline, a “deadline” of how much longer I can cope with this for.

For the first time in my entire life I have stopped the frantic search for an answer from the outside world, and instead, I am looking within. And slowly, but surely, I am detaching from my identity as a sick person.

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.

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.

Wellness Wednesdays, and making time for me

You should sit in meditation for twenty minutes every day. Unless you are too busy; then you should sit for an hour.

Zen proverb

A friend shared this proverb with me a long time ago, and I often think of it when I am struggling with my own meditation practice, dietary habits, and all the other things that I try and prioritise because I believe they make a difference to my wellbeing.

There is no denying that we live in an incredibly fast-paced world. The level of expectation on all of us to achieve and to ‘do’, is crazy, and finding the space to slow down and take time out for ourselves is becoming increasingly difficult. However, I do also think that it is our own responsibility to choose what we prioritise. The phrase “I don’t have time for that” is one of my biggest bug-bears, even though I catch myself saying it often, if not out loud then at least in my head. Because what we really mean when we say “I don’t have time for that”, is “that’s not a priority for me”. How can I tell myself I don’t have the time for meditation today while watching dog videos on facebook or googling some shit that I really have no need to google? And when I write it on my blog it sounds totally ridiculous and stupid, but it is a genuine struggle to make time for the things that really matter when technology provides us with constant distractions.

There are lots of things I try to prioritise in order to help my health. This includes eating a paleo diet, which means cooking pretty much everything from scratch and very few shortcut meals like pizza or sandwiches or pasta. It includes regular meditation which I know has a positive effect on my stress levels and therefore on my health. I have found that the key to a successful regular meditation practice is setting aside the same time every day in which to do it. But this brings its own challenges, especially since the only time I reliably have free every day is first thing in the morning. And getting up half an hour earlier is all well and good when I’m feeling well, but when I am sick and literally feel like I have the flu, it’s not so easy. Stress is a huge trigger for my health and so I try really hard to not overdo it, to keep at least a couple of evenings every week free in my diary for rest and recuperation, and to allow myself plenty of downtime. But this becomes increasingly difficult the better I feel. If I’m having a good day or a good week then I want to do absolutely everything right now – I want to embrace the good and make the most of it, because I know there is a good chance tomorrow won’t be so good.

I am grateful that chronic illness has shown me the importance of looking after myself. I am grateful that I know how to take care of myself and that I have the resources to do so. But, I am still human after all. I still have a job, a house to look after, a relationship to nurture, friendships to cherish, rabbits to take care of… as well as all the stresses of chronic illness.

So this week I have introduced ‘Wellness Wednesdays’ into my life! This is one day of the week where I promise to myself – no social media, no excessive scrolling through google, no rushing around like a headless chicken. Today I have meditated, I have eaten well, I have rested, and I have chosen to prioritise the things that nourish me. That’s not to say I won’t try to do all of those things again tomorrow. I try to do them every day, but I also accept that it is not always easy. Wellness Wednesdays is an opportunity for me to remind myself of what really matters. To prioritise me. I would love to have some company in my quest for Wellness Wednesdays, so if you fancy joining in, message me!