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Everybody's talking about ME... well, some hopes!


ME being Myalgic Encephalomyelitis, of course. Chronic Fatigue Syndrome. Not ME as in, well, me. Although who knows, perhaps if my plans for world domination come to fruition, everybody will be talking about me…!


I kid, I kid. I don’t have the energy for world domination, even if I do have a lot of angst at the current state of the world. All I can do is rally for change within my present limits as a self-published author. And a self-published author with ME/CFS, at that.


You may be wondering why I’m calling the condition by three different names. Truth be told, I’m not entirely sure why it has three different names. Myalgic Encephalomyelitis is a mouthful, hence its shortening to ME, but my current theory is that it looks and sounds too much like the word ‘me’. Saying or typing ‘I have ME’ doesn’t mean very much, particularly to people who have no idea what the condition is. This is why I – and most people as far as I can tell – call it in day-to-day life by the more universal name: Chronic Fatigue Syndrome, or CFS. But when I’m writing, as I am now, I go for the best of both worlds, and call it ME/CFS.

‘Chronic Fatigue Syndrome’ sounds fairly self-explanatory. A condition because of which you’re tired all the time. Sounds simple, right? Sounds like something that afflicts half of the world’s caffeine-dependent population, right?


Wrong.


If it was, God knows there would probably be a cure right now.


ME/CFS is more than simply being tired all the time – although that is the most common shared symptom. Often comorbid with depression as well as other mental health conditions and neurodiversities, the most recognisable symptom is extreme tiredness. The way I like to describe it is like living life on a faulty battery. In people without ME/CFS, the battery is replenished every night, having trickled down steadily throughout the day, allowing them to wake up with enough energy to tackle whatever they have planned. Mine, like so many others, is not like that. I may wake up at 50%, having gone to bed at 8% the night before, after a good nine or ten hours of sleep. The simple act of getting up and getting dressed can take me down to 40%, leaving me with 30% to last me throughout the day given that getting undressed and going back to bed will theoretically take 10%. That 30% can drop by half within a couple of hours, leaving me with the bare minimum to get through the rest of the day unless I stop and rest. Then, of course, by the time I go to bed, I’m practically down to 0 again, except on this night I can’t sleep. I toss and turn, wake up periodically in the night, leaving me in the morning with barely 40% to tackle a day that was identical to yesterday.


So imagine that’s my weekday. A work day. Now look at a non-work day. Let’s say I’ve got coffee scheduled with a friend. I’ve woken up at 60%, but taking a shower and getting dolled up in order to meet my friend has taken me down to 45% already. Driving to the coffee shop has taken 5%, and the energy expenditure required to actually socialise has taken me down to 20%, with another 5% gone on the drive home. I get home, and rather than cracking on with the laundry or vacuuming or something equally productive, I collapse in a heap on the sofa. Someone who doesn’t know me would probably think I was being lazy, as I pull my laptop towards me and select something mindless to watch on YouTube, but this is how I’m attempting to rest. I don’t sleep during the day, because a) I can’t and b) it will stop me from sleeping later that night, so this is how I recharge. Except it’s far less effective than sleeping, and two hours later I’ve only gone from 15% to 20%.


And then there’s the PEM. Post-exertional malaise. The reason why I’ve collapsed in that unproductive heap in the first place. Having been running on adrenaline while I was out in order to keep going, my body is now suffering for it, belabouring me with absolute exhaustion, full-body aches, brain fog and a general worsening of all the symptoms I suffer on a daily basis. It really isn’t just a simple case of being tired all the time, or feeling more tired than usual after doing a strenuous activity. It’s joint pain, tachycardia, insomnia, headaches, migraines, light sensitivity, nausea, dizziness, problems with thinking or concentrating, and normally a combination of most of these.


There’s no one known cause of ME/CFS, and there are no known cures. Physical afflictions such as infections, hormones, genetics or medical procedures have been known to have a bearing, but the truth is that nobody knows for certain. As for treatments… there isn’t much. Cognitive Behavioural Therapy is sometimes offered, but other than that, we’re pretty much on our own. I regard myself incredibly blessed to have a good support system around me, and a job that I can do from home (even if it does still utterly deplete my energy). And I am on the milder end of the spectrum in terms of severity. I still manage to work a full-time job and write books… somehow. I don’t really know how either. Unfortunately, this is not the case for everyone.


There’s a reason I kept the cover photo of this article black and white. For people on the more severe end of the spectrum, even the simple act of opening their eyes and looking at something can exhaust them. These people are often bedbound, unable to care for themselves, much less to hold down any sort of job. It is these people who suffer the most, because ME/CFS is so little-known that society very often deems them as lazy. I kept this cover photo deliberately monochromatic as a nod to those people, an attempt not to assault their eyes with bright flashing colours and a barrage of words. You may have heard of Lauren Hoeve, a notable person with ME/CFS, who chose to end her life via euthanasia in late January, because the condition took away her entire quality of life. She was on the extreme end of the scale… but she is just one example of the far-reaching effects of ME/CFS.¹


And it’s a fitting coincidence that ME Awareness Day – today, hence this post – falls the day before the start of Mental Health Awareness Week. The impact of ME/CFS on mental health cannot be overstated – because, after all, the condition impacts every area of our lives, however severe our suffering. For several years I was only able to work part-time, and the only reason I can now work full-time is because it’s a home-based job (so no commute). My search to find a full-time remote position was long, complicated and arduous – but I’ll cover that in another blog post. But suffice to say, with every day that passed, I was reminded time and time again of my disability.


Because it is a disability, and when compared to people without ME/CFS – the life I could have had – it saddens me every day.


Perhaps you were clicking on this article in the hope that it would be one of my usual, silver-lining-focused blogs. That I’d say ‘hey, it’s pretty bad, but here’s the upside’. Unfortunately, however, there isn’t really an upside to this condition. I decided that I had to be completely honest. This is, after all, ME Awareness Day.


So now you are aware. This is ME – and not in the sense of the Greatest Showman song.


¹If you are worried about your mental health, or that of someone around you, here are some helplines you may find useful.



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