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.

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.

An update on my Lyme journey

It’s been two years since I was diagnosed with Lyme disease and it feels like a good time to write an update on how things are going. Apologies for the long post; there’s a lot to say.

Lyme disease treatment

For those who don’t know, I have been having treatment for Lyme and coinfections at a specialist Lyme disease clinic in Washington DC. The decision to go abroad was a very big one and, obviously, the costs involved in that are pretty huge. But, as everyone in the Lyme disease community knows, there is an unthinkable lack of disease knowledge and awareness in the UK, particularly in the NHS, but even to a lesser extent in the private sector. Receiving treatment in the UK, certainly with antibiotics, is pretty much impossible unless you see the tick, present with a bullseye rash and flu symptoms and have a positive NHS test, and even then, treatment is by no means a given. I had been ill for years with an array of weird symptoms and had already had many bad and, to be frank, abusive interactions with medical professionals, so I knew that seeking private treatment, and seeking it abroad, was the right decision for me.

I have been under the care of this clinic in Washington for about 18 months and boy, it has been a tough road. A couple of months after I started treatment with them, things got really, really bad. My physical symptoms were flaring left, right and centre; I was gaining new symptoms; and, worst of all, I became very severely depressed. I suffered with really bad insomnia and I spent most nights crying about how awful I felt, how much pain I was in, and how I couldn’t see a way out of it all. I felt like my brain and my body were on fire. Me and my boyfriend were recently reflecting on how things were for us at that time, and honestly, I don’t know how either of us coped. He had to deal with me crying, sometimes for hours at a time, knowing there was nothing he could do to make things better. That guy has the patience of a saint.

But 2018 has, on the whole, been a year of slow, steady recovery, which I attribute to several things.

In terms of my Lyme treatment, I have been treating with pulsed antibiotics for 18 months. That means I take several different antibiotics for a set period of time, followed by a period of not taking them. This approach is believed to “trick” the bacteria, which are very good at hiding from the immune system under conditions of threat, for example when antibiotics are present. The breaks in treatment cause the bacteria to come out of their hiding places, at which point we hit them again with more antibiotics. A pulsed approach is also aimed at improving the host’s (i.e. my) immune system in learning to deal with the infection by itself.

I do believe that antibiotics have a part to play in chronic infections and I am sure they are part of the reason why things are improving for me. But I am also increasingly of the belief that recovery from Lyme disease is about more than just kill, kill, kill.

The Gupta programme

In January 2018, I started a “brain retraining” programme called the Gupta programme, which is designed for Chronic Fatigue Syndrome, Fibromalgia, and other chronic health conditions. In the chronic illness community you’ll often hear people using the phrase “game changer” and for me, the Gupta programme was my game changer.

The overall aim of the programme is to reduce the ongoing fight or flight response that people with chronic illness tend to experience, in order to calm the system and thereby strengthen the immune system and allow the body to heal. It involves several different elements but the core approach is a) a series of techniques to break thoughts that are focused on illness and symptoms (“I’ll never get better”, “I feel so horrendous”, “I can’t cope with this” etc etc), and b) mindfulness and meditation.

This programme was a massive eye-opener for me. When I first started using the techniques, I noticed that I was having negative symptom- or illness-related thoughts ALL. THE. TIME. As in, hundreds of times a day. When I felt ill, the thoughts were about how awful I felt and how long this would last and what might I have done/not done to cause a symptom flare today. When I felt well, the thoughts were about how long it would last, how much I had to do before the next flare came around, and general worry about the illness. Although understandable, these kinds of thoughts serve no purpose other than to increase my stress and anxiety, stimulating the fight-or-flight response and making healing much more difficult.

Within a few weeks of using the programme these thoughts were cropping up much less often and I found that my mental health benefitted enormously, but I also had some huge gains in terms of my physical symptoms. I got a bit lazy with my use of the techniques over the summer but I have started using it in full-swing again, to great benefit. I really believe that this is the key to health and healing for me and that if I continue to use these techniques alongside the other things I am using to both kill the bacteria and support my body, that I will recover.

Meditation, mindfulness & pacing

I have meditated on and off for a long time, but the Gupta programme really helped to show me how important it is for those of us with poor health (and, to be honest, everyone with good health) to take the time to slooooooooow down. I now have a twice-daily meditation practice and whereas in the past meditation could sometimes feel like a chore, it is now something I look forward to each day. (If you are interested to know what meditations I use, I have details of the ones I have found helpful on my new “Resources” page – click here)

As well as sitting down and actively meditating, I am also learning to live more mindfully day-to-day. This is a part of the Gupta programme and this has quite honestly been life changing for me. I never even realised before that I spent every single second of my life rushing. I thought fast, I walked fast, I spoke fast. Cooking dinner – do it quickly. Reading a book – do it quickly. Having a shower – do it quickly. This, my friends, is stressful. It is stressful for the mind and it sure as hell is stressful for the body, especially a body that is trying to heal from years of chronic infection.

This is a part of the Gupta programme that I still struggle with. I have days where I manage to slow things down and other days where I don’t even realise until I get into bed that I’ve been rushing, mentally as well as physically, all day. I will get there, but this is a habit of a lifetime I am trying to change!

Fertility & hormone balance

Ok, this is a biggy and I suspect it will have its own blog post in the near future. For now, let me just say that my 15 years or so of infertility appear to be reversing. At age 27 I had oestrogen and progesterone levels of a post-menopausal woman. I haven’t ovulated once (as far as I know – but I’m pretty certain) since I came off the pill about 4 or 5 years ago. That is, until last month. I ovulated for the first time in ~15 years, just a few months after my 30th birthday. And, my hormone levels are now normal. This is absolutely HUGE and a sign to me that my body is healing, little by little.

Other symptoms that are changing

There are various symptoms that I am slowly losing and it’s nice to actually write this down because often we get so caught up in the symptoms we still have to work on, that we forget how far we have come. I am gradually gaining more energy. I still have crashes, mostly when I have done too much or allowed myself to get stressed. But on my “good” days I now have what I consider to be the energy levels of a normal person. Woohoo!

I sleep about 9 hours a night. This is more than I’d like but a healing body needs a lot of sleep, and I am letting myself sleep as much as I need, as often as I can. Still, 9 hours of solid sleep is so much better than the 1-2 hours I was getting last year.

I am not depressed. In fact, my mood is probably better than it’s ever been and I feel genuinely happy and contented with my life right now, even with the remaining symptoms that I have. There aren’t enough words to describe how amazing that is.

I am gaining weight. When I first started treatment last year I lost a lot of weight, and got down to 7st 10 (108lbs), which is the lightest I’ve been since I was a teenager. Over the last 6 months or so I have been gradually regaining weight and am now firmly within the “healthy” weight range for my height (though a few more pounds for some extra padding would suit me just fine!).

Most of my other symptoms (headaches, fevers, joint pain, muscle pain, swollen glands….) are still there, but are less frequent and/or less severe than they once were.

What does the future hold?

I will soon be going onto a maintenance protocol with my Lyme treatment, which involves lower doses of antibiotics, taken less often (i.e. the “off” periods of the antibiotic treatment get longer and the “on” periods get shorter). I am very much looking forward to this!

I have been doing some pretty extensive research recently into herbal treatments for Lyme disease, as I would like to support my healing longer-term with the use of herbs. I have been reading Stephen Buhner’s Lyme and co-infection books and I have learned so much, they really are fantastic books. I am developing my own herbal treatment protocol and plan to add this in, with the agreement of my Lyme specialist, when I move onto maintenance. The thing that I like most about Buhner’s approach is that it is less focused on killing the infection(s), and more on supporting the body (reducing inflammation and the cytokine cascade, strengthening the immune system, and repairing damage to organs and systems). Also, they’re from plants, which is awesome. I am attending a local “Make your own herbal medicine” course in a couple of weeks which I am VERY excited about.

There is no question in my mind that I will keep using the tools in the Gupta programme to support my continuing recovery, and I really can’t imagine a life without daily meditation and mindfulness.

As I move towards reduced doses of antibiotics, I plan to get my gut microbiome tested. There is a fantastic company that will test your microbiome via a sample (read: poo), to learn what species of bacteria/yeast are under- or over-populated in the gut. They then provide dietary recommendations to optimise your microbiome. Gut health has huge implications for chronic illness (good books on this – The Paleo Approach by Sarah Ballantyne; Gut by Giulia Enders) and I hope that this will help my journey to recovery.

Mostly, though, my future is about continuing to heal and recover by whatever means necessary. I always assumed that health meant being symptom free, and this was initially my goal for treatment. But now, as I am learning more about health and healing, I want to be so much more than symptom-free. I want to be truly healthy inside and out. I want to thrive. And I honestly believe in my heart that I will get to that place, when the time is right.

Thanks so much for reading my blog and listening to my story.

Katie x

When recovery is a spiritual journey

Up until a year or so ago, I would never have considered myself a spiritual person. In fact, if I’m honest, I probably looked down on people who were religious or spiritual. I was a woman of science, and I had no time for anything remotely woo-woo. Despite my love of yoga and my increasing interest in alternative approaches to health, any mention of chakras or energy fields or “connection to a higher power”, quite frankly, had me eye rolling.

But when you have been ill for so long and nothing has helped, you will pretty much try anything. And while I still have one foot in the door of modern medicine, I am realising that alternative and conventional approaches don’t need to be an either/or situation. They can be used side-by-side to serve different functions and ultimately, work together to achieve healing.

Healing.

Another word I would have turned my nose up only a year or two ago. What does healing even mean? Isn’t it just a non-descript word that charlatans use to trick people into giving them money? The old me would have thought so, but now I am beginning to understand. I can take all manner of medicine to kill the infections in my body, but even modern science accepts that infection is more than just a function of the bacteria or virus. Because two people can contract the same infection and react differently. There are so many factors that can influence the body’s response to infection. So maybe, just maybe, killing the infection is only part of the story. And for years I had been looking at nutrition and supplements and exercise and hormone balance, and all of those things that add complexity to the story of infection, but are still safely grounded in the world of science that I was so familiar with. And yet there was a gaping hole in the puzzle. The one thing that I had neglected to pay attention to, for all those years: myself. My personality, my habits, my beliefs. Me.

And so began my spiritual journey (sorry, the word “journey” still makes me cringe). I realised that I had spent my whole adult life stressed, wired, and anxious. I was such a perfectionist that any mistake, no matter how small, was an intolerable hit to my self-esteem. I had no self-love, no self-compassion, and I, like so many people, felt wholly inadequate most of the time. I felt judged by the world, and I judged the world right back. And that whole package of personality, all of those traits that I thought were the only way to live and if anything, were something to be proud of because they made me strong and successful, were in fact part of the reason I couldn’t get better.

And so began my quest to no longer seek all the answers from the external world – infection, diet, exercise, sleep – and instead, I turned my attention within. And with that came the most overwhelming sense of ownership and hope, because now I am no longer dependent on finding the answer out there in the big wide world, of needing to research and learn and obsess about what I might be missing. Instead, I can relax and let go and enjoy life, safe in the knowledge that the final pieces of the puzzle are already here. I just need to open my eyes.

And this realisation has changed my life so profoundly. I am no longer rushing every second of the day. I am no longer judging my self-worth by how hard I pushed today. I am learning to love myself for who I am, not for what I have achieved. I am learning to be a human being, not a human doing. I am learning that the world is ultimately a good, safe place and that everything will be just fine.

And while there have been, and continue to be, some very dark days along the way, I am so grateful for everything I have learned from poor health. I am happier and more fulfilled by life now than I ever have been, and I can’t help but wonder whether I would still be painfully judgemental and convinced of my inadequacy, were it not for those difficult experiences.

I have no doubt that I can and will get better, and that I can live the life I choose for myself. It may take some time, and that is just fine, because I believe that I will not completely recover until I have learned all the lessons that I was supposed to learn from this experience. But I am in no hurry, because I know that I am healing.

 

Afraid no more: A poem

I am a totally concrete, non-abstract, logical thinker. I have no imagination whatsoever. So it came as a big surprise this morning when I had a really strong visualisation of me no longer running from Lyme disease, but instead, confronting it, calmly and peacefully, right in the face. It happened while I was doing one of my favourite chronic-illness/pain meditations where you meditate on the symptoms, deliberately focusing on them without judgement, without labelling them as good or bad and allowing them to “be” rather than trying to push them away. I get so much benefit from it and have been using it a lot this week, which has been one of the worst weeks I’ve had for as long as I can remember.

It came as an even bigger surprise when, after my meditation, I had an urge to write a poem. I haven’t written a poem since school so I really have no idea where it came from but since I’ve been in bed all week, it’s not like I had anything else to do!

So here it is: my first grown-up poem!

Afraid no more

You open your mouth, wide as a cavern
And with all your might, you let out a roar
My soul fills with dread, my heart full of fear
For you, my stalker, my power-hungry tease
You lurk in the shadows while you let me prevail
Waiting to pounce, control forever yours.
Now you roar, you roar, you roar with such fury
Two choices I face, do I cower or run?

My heart starts to race, my fingertips tremble,
So desperate to be free from your embrace.
I turn and I bolt, praying I can outrun you
But as always you are stronger, right at my heels
I am so afraid, but I hopelessly run
And I hear you laugh at my feeble endeavour
My legs are tired and I start to slow
Walking, feet dragging, exhausted and weak.

I come to a stop and I close my eyes
Inhaling deep, my inner-strength reignites
I turn around and look straight at you
A flicker of hesitation as you question my will
My mind is calm and I trust my decision
I walk towards you as my heart starts to settle
Face-to-face now, your breath strokes my skin
No longer afraid, I feel your presence
I exist within you, and you within me,
In every cell, every vein, every breath that I take.

The faster I run, the harder you chase
So what do you do now that we are face-to-face?
I invite you in, and you relinquish your power
Know this, old friend: your days here are numbered
I am no longer the frightened girl that you crave
I am looking within, where answers reside.
The once crashing waves lap gently at the shore
I am no longer running, for I am afraid no more.

 

 

 

 

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.

Chronic Illness & Fear of Judgement

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

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

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

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

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

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

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

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

The paradox of being a brain-fogged academic

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

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

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

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

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

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

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

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

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

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

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

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