M.E. (also known as Chronic Fatigue Syndrome) has shaped my life since I was 11. This condition takes various forms (an NHS overview can be found here if you’re curious).
There are other voices on the internet, braver than I am, in documenting the daily drudgery of this condition. I have written about it in other contexts but generally I hide it in the past tense: ‘I had it growing up’, ‘I’m fine now’ or ‘I’ve learnt to manage it‘ – like it’s a dog I’ve taught to stop chewing the sofa.
So why bring it here – my patch of the internet to explore more enjoyable things?
Because in reality, some days I handle it and sometimes it very much handles me. In my most recent bed-bound hit of M.E. (just after my birthday), I made a plan. My next post would be a reminder list of the main things I’ve learnt from this condition. A post I wish my younger self could have read. To help me get through the next bout, and hopefully help someone else out there:
1 – Know Your Warning Signs
All our bodies tell us when we’re tired, obviously. Maybe it’s a yawn, a heaviness in your limbs, that bob/jerk of your head as you drift off in public…
If there’s just ONE thing you take from this post, please let it be this: M.E. is more than general tiredness. Being ‘tired’ is a rough description of what this condition feels like if you don’t have it. But it’s really not the same.
Everyone’s experience of M.E. is particular to them. My early signs of it coming on are that my hands tremble; my joints ache and a mental fog descends (I’ll walk into door frames misjudging the width, slip the wrong word into a sentence without realising, be too slow to string words together to take part in conversation). Awkward but not too obvious. If I can rest properly, I can shake it off in a few days.
If not, it’ll worsen. I won’t be able to move my limbs easily – they’re aching, stiff and leaden. I’ll wriggle my toes to reassure myself I still can. I’m blank in the eyes and immobile by day, lying awake at night feeling like my muscles are burning but can’t be moved. My awake brain is trapped in an asleep body, and it’s frightening. It could take a few weeks to fade back down to that hand tremor, longer to get back to feeling fine again.
If I pay attention to the slipping, dropping and stammering early, then I can catch a rest before I desperately need it. I’m not great at acting on these signals but, actually, a couple of ten minute power rests (in bed or if I can’t be at home, sitting in a cafe/library/waiting room with headphones in) can get me through a tricky day without having to cancel everything.
People have a massive range of severity with this condition and what works for me won’t work for you. But notice your early warnings and work out how you can treat them quickly.
2 – Be Honest
To yourself: M.E. is what doctors diagnose you with when they’ve done loads of tests and can’t work out what else is wrong. So from the outset, you associate it with failure: your body is failing you and you’re failing doctors’ norms. The GP might then suggest more holistic solutions like change your diet, so you do, or get more rest, so you try. In your desperation, you might even buy a book about the healing power of crystals. However it goes, trying to work out how to manage M.E. is a mess. All I can advise is being honest about how you’re feeling, and to weigh other people’s advice against your gut instinct. You will always be the one who knows your condition best.
To others: You don’t have to tell everyone that you have a bizarre tiredness disease (and yes, it’s probably best not to call it that). But you definitely need to tell the people who are around you most regularly. They’ve probably noticed something’s up… so show them the NHS or Action For Me pages, and tell them honestly how you’re feeling. My parents were (and are brilliant) and dealt with a lot of scepticism from other parents, doctors and teachers back when there wasn’t the wealth of accessible information you can now find online. You don’t need everyone to understand M.E. (and not everyone will) but the ones who do are gold dust. In a ridiculous stroke of luck, my parents’ next door neighbour whilst I was growing up was an M.E. specialist doctor who knew to test for things like hand tremors and reaction time. I was incredibly lucky to have expertise on hand but there will be teachers, friends and colleagues who can share their own or loved ones’ experiences of this condition, if you open up to them.
Side note: If you feel your GP isn’t knowledgeable enough about M.E. (don’t get fobbed off with Lucozade or endless boxes of paracetamol) then push to see a specialist – even if it takes a while, it’s worth the wait. As well as giving appropriate advice, a knowledgeable doctor makes you feel listened to and validated. You can also get a medical note if you need to justify taking longer off work in a bad bout, or just want more evidence to discuss flexible working with your employer (see point 7).
3 – Treat Your Body like its Your Own Child
This is a weird phrase and I’m sure I’ve butchered a better version of it. I basically mean look after yourself – whether you have M.E. or not. Treat your body with the same care you would your own child: make sure it takes naps when it needs to, let it have small amounts of junk food but not too much, let it make mistakes and learn from them, let it cry when it has to, challenge it to do it’s best each day but love it unconditionally through success and failure. You can’t control how it rebels, so just be patient with it.
4 – Don’t Apologise
This is from my partner rather than me. When I’m in a really bad M.E. state, I just lie in bed and apologise incessantly.
It’s not your fault.
5 – This Too Shall Pass
This one’s from my mother. In a Biblical way, it’s both apocalyptic and comforting to remember that all things end.
6 – Question Your Thoughts
Whilst I’m a massive advocate for being caring to yourself physically when you’ve got M.E., I really think it’s important to question everything you think whilst it’s affecting you.
Feeling bad physically is going to make you feel bad mentally. It takes energy to filter out negative thoughts, and when you’re unwell that filter breaks. Negative and inaccurate thoughts are allowed to seep through, and are listened to as though they are legitimate. My brain will tell me I’m useless (see point 4), I’ve not achieved anything, I have no friends, I need to remake my entire life but I’ve got no energy to do it, so I’ll just slip off the planet and no-one will notice….Thankfully, when I’m recovering these problems shrink down again.
I have learnt not to make any big decisions or take any negative thought too seriously when M.E. is hitting hard. I just can’t trust my perspective. Also, I need to use that brain power more wisely, which leads me to…
7 – Work Smart Not Hard
I got through my school exams by doing the required amount in bed or on the sofa – learning through textbooks and parents’ invaluable help (again, I was so very lucky to have this). There were a lot of important school and teenage experiences I missed, gaps I will now never fill. But on the upside, I learnt how to study in a way that works for me and how to take charge of my own workload. I believe this made the adjustment into university and then freelancing so much easier than it would have been otherwise.
My work in theatre has been project-based, as part of a small team or self-managing, and it’s now working from home. I’m lucky in that arts is a flexible profession, unlucky in that the pay isn’t great. But that trade off works for me at the moment. More and more industries seem to be adapting into offering remote or flexible working, so there’s a lot of hope for the long-term. The more honest conversations we can have with employers about how they can get the best work out of us, the more we all benefit.
In terms of work, the main thing I’ve learnt is that the people you work with, your boss particularly, become even more important with this condition. Use the job interview to get a read on the people in that organisation, whether they seem kind, fair and happy. They might not be Disney characters but if there’s something wrong under the surface in that work environment, you’ll notice it as an outsider. It’s a primal, instinctual thing. If you have any doubts, ask around (Google employee reviews, ask friends, etc). If you’re still unsure, don’t take the job (however much it pays). Keep looking for your troop. Good people make it worth the fight to get out of bed and they will help you when you can’t.
8 – Imagine
I firmly believe that I was saved by my imagination (cheesy as it sounds). When I wasn’t well enough for school and was studying at home, I’d have 40 minute resting breaks lying in bed and listening to audio books – Harry Potter of course, as well as things like Jeeves & Wooster stories. When I finished my study for that day, Mum and I would watch films – everything from Lord of the Rings to Katharine Hepburn & Spencer Tracy classics. Stuck on the sofa or in bed, I’d distract myself from all that was wrong by creating characters in my head that I could slide into these stories; imagining their lives, backstories and outfits in tremendous detail. Funnily enough, a lot of my work now involves storytelling and adaptation – every day of my professional life banks on the skills learnt in those trapped hours.
To achieve a greater sense of well-being we’re encouraged to think of our minds and bodies as one united whole, and that’s probably for the best. However, one of the massive advantages we have as humans is that we can let our mind escape our reality if we wish (preferably just for a little while). This ability gives us empathy – I can imagine myself in your shoes. But it also allows us a relief from ourselves – we can absorb into films, books, TV, music, podcasts, brain teasers, maths problems, doodles, etc. If your body is physically limited, sending your brain into these channels is even more vital: they’re the means to feel like you’re still living, achieving, challenging and learning. You’re making the most of where your brain can go when your body can’t.
That said, you can’t just zombie in front of Friends. Your imagination should work for you. So, plan what you’d most like to do when you’re well. Make money no object here or it’s no fun: the point here is to feel purpose and hope again (you can scale it to fit practicalities later). If you’re alert enough, you can explore this dream idea with research/Google/Pinterest/etc. Scroll through pictures of the places and people you’ll see. Read about the career you really want to have. Amongst the fog, there can be some clarity in the worst moments about what and who really matters to you, or doesn’t. When I’m knocked out by M.E., I try to think: ‘this too shall pass’ (see point 5) but also ‘when it does, I’ve got plans’.
If it’s really bad, you don’t need to do anything other than breathe and imagine a place. I’ve been lying in sunshine in a field of heather; lounging by spa pool in a 1950s swimsuit…wherever saved me in that moment. I’ve desperately concentrated on what heather smells like, and the width of the white pinstripe on the red swimsuit. Place yourself somewhere, and take your time to give detail to what’s comforting about it. You can imagine your favourite people with you – I tend to just trust they’re there.
Obviously, there are conditions and scenarios where you’ll want to feel very present in reality, so these tips won’t apply. I’ve found them helpful for my particular M.E. but alter them to what’s helpful for you.
9 – Value the Positives
I’ll round this off by reiterating that I’m no expert and a lot of the motivation of writing this post was to teach myself, more than anyone else, ways to keep coping when my body isn’t working for me. One of the positives of M.E. is you’re forced to develop your own coping strategy, even if it takes a while to vocalise it.
There are other positives, if I look for them. I think M.E. made me a lot more determined: I got AAAB in my final exams, a first class degree and a distinction Masters (you bet I’m bloody proud). It’s given me such a deeply appreciative relationship with my parents, who are astounding, with my brother, partner and friends (they’re all amazing people). It pushed me to leave home, travel, and live bolder in my early twenties than I probably would have done otherwise (I’m now paying for that a bit – in health and financially!).
M.E. is still rubbish, don’t get me wrong. It’s still robbing various things from my life. I still feel ill, sad and lost. But not every day. On the days I don’t, I’m very grateful to be up and about. To be here.
Photo credit: Jillian Levick. Giant’s Causeway, 2018