“Knowing M.E., Knowing You (aha)”

First of all, I apologise for the title: as a huge Partridge fan, using that title was a big factor behind writing this (and I still think it’s bloomin’ hilarious).

I’m currently sat in my flat after a day when I couldn’t go to work because of a long-term, debilitating condition that I’m still learning to control. I think it’s the frustration of today, coming after several months of controlling the symptoms pretty well, that has spurred me into finally writing this.

The reason I couldn’t go into work today is because I have M.E. Also known as Chronic Fatigue Syndrome (CFS), it’s a much-misunderstood and much-maligned condition particularly hated by the Daily Mail (not exactly bothered by that). I have good days and I have bad days, and today was a mediocre day. I say mediocre, as I was still capable of leaving bed, watching TV and reading. Oh, and writing, obviously. What I couldn’t do was move without pain, or do any normal task without feeling extremely drained at the end of it. By normal tasks, I include having a shower, reading and paying a credit card bill, and making a sandwich.

On a bad day, I can’t move from bed. I’m in constant pain: ever get that feeling the day after the gym when you haven’t been for a while? Imagine that times ten, without the satisfying feeling you get from knowing it’s done you good. On a bad day, I feel like I’ve been hit by a sledgehammer and treated with a good dose of Rohypnol, without the pain relief. People who assume from the name that CFS is all about “feeling a bit tired” have no idea. It’s not just the muscle pains, which move around your body in fun and inventive ways: the worst part for me is the “brain fog” which makes you incapable of articulating your thoughts. On bad days I lose the ability to form articulate sentences as I’ve forgotten the words. I’m completely unable to read as I can’t concentrate for long enough to allow a word to make sense in my brain (which for me, as someone who devours books and loves language, is one of the most terrifying things to experience). Any physical, mental or emotional exertion at all wears me out, and yet sometimes I can’t sleep because of the random muscle pain keeping me awake. Constant pain and insomnia when you are already exhausted verges on the unbearable.

But I don’t have bad days very often any more. I’ve learnt over the past 9 months to a year that M.E. isn’t just something you can ignore that flares up occasionally: it requires significant changes to your lifestyle to manage a normal life. I count myself lucky that I still can: I know people much worse off than me who simply can’t hold down a job or full-time study, which makes it even sadder that much of society considers their condition to be either trivial or invented. But to maintain my normal life (full-time job (involving a fair amount of travel), friends, boyfriend, normal twenty-something social life) I have to be very careful about what I do and when I do it. I’m normally in bed by 10 every night, because I know that if I stay up later I will feel extremely tired and start to get pain and brain fog the next day. If I do stay up later, or go out like I did at the last NUS event I went to, I’m ill for the next 4 or 5 days, and if I make it to work I’ll need to be in bed all weekend.

I can manage the physical exertion now, for the most part. Mental exertion has to be planned or compensated for: for example, after writing the Student Written Submission last year I had a lot of time off because I worked too hard for a few weeks, and it took a lot of time to recover. I don’t need to do that any more, but I do need to plan my work well so I don’t get unexpected deadlines rushing towards me (which should be fun doing a part-time MA next year!). Emotional exertion you can’t plan for. The main reason I’ve been off today is because of the stress of last night’s rioting (I live in the city centre). Five hours of constant worry between leaving work and going to bed definitely took its toll, and I suppose I’m annoyed that there’s no way I could have planned for or mitigated that. Hence writing this note.

p.s. It’s worth reiterating again, I have MILD CFS. People with moderate and severe CFS will have hugely different accounts to mine, which is just mine, and I count myself lucky for that.

p.p.s. For more info, see http://www.patient.co.uk/health/Chronic-Fatigue-Syndrome-/-ME.htm

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