10 May 2016
This week is ME awareness week, and its quite timely for me. For the last six weeks or so I have been thrown into quite an 'episode' which is making me re-evaluate my relationship with my old frenemy Epstein Barr. Sometimes I have seen it as a mere irritation, sometimes a simple pain in the ass. More recently it has begun to have more severe effects.
For a long time in our household, we have tried to make light of the whole thing. Curly tells me I am just greedy, not content with an MA and studying for a PhD, I want to have ME too. Most of the time it is something I can make light of - it comes and goes and I can sometimes go for weeks at a time without feeling the effects of it too badly. Generally, it doesn't stop me from being able to go to work everyday and function fairly normally, which is why I have never thought of it as a disability. I have never thought it was severe enough to impact on my day to day life enough to warrant me considering it a disability, but more recently, I am wondering.
The trouble with an invisible illness is just that. No one can see what's going on on the inside, so the assumption is that everything is ok. And even the diagnosis itself is an odd thing. Its the illness they tell you that you have when they have tested you for everything else, and all the tests have come back negative. ME is the thing that fills the gap where our medical knowledge ends, which makes it really difficult to describe to someone who is not familiar with it. Even its name varies – is it ME, CFS, or just plain old Epstein Barr? (I hate all of them!) The symptoms vary from one episode to another, and they vary from person to person. Sometimes I have to stay in bed and not go out, sometimes it manifests like arthritis, making all my joints and muscles and bones ache with it. Sometimes it masquerades as IBS, or depression, or anything else it decides it wants to mess with. Sometimes it just makes me feel grumpy and irritable, with an underlying feeling of just not feeling well, and if people aren’t prepared for that, or if I don’t have the energy to explain, sometimes I come across as an asshole. Other times, it leaves me shaking with symptoms like hypoglycaemia, or flat on my back feeling too tired to even sleep. Its sneaky, ME, its shifting, changing and never the same two days running. Lately its been creeping up on me and punching me hard in the back when it thinks I am not looking, and then poking fun at me.
Lack of treatment options is possibly the most frustrating thing about it. Anti-candida diets have been shown to be ineffective (phew! tried that once and was miserable!) and there is no medication. It makes it a lonely old illness, as there is no one to turn to for advice, other than tentative links on the internet, and while I can just about scrape by at work, inevitably that leaves me with no energy for anything else. As a consequence, my social life is always the first to suffer. At weekends I rarely venture far from home, and often have to cancel at the last minute. I probably seem quite flakey to outside observers. It's often easier not to try and do things than to agree to stuff and then cancel.
As a result of my last online foray, at the moment I am blasting it with vitamin treatments. In the past, on down days I could dose up on an iron supplement and muddle through, but these days the iron doesn't touch the sides. So I am trying a new combination - high dosage vitamin B, C and Zinc, with a bit of extra Omega thrown in for good measure. That just about gets me through the working day and home so I can collapse in a pyjamaed heap, sleep for eight hours and then start the whole process off again the next day.
The strangest side effect of all is how this then becomes really useful research for the novel I am working on. When Mary Webb was writing a hundred years ago, she was bending under the weight of severe bouts of Graves' Disease, for which there was no known cure. So this is really helping me to appreciate how frustrating, tiring and frightening that must have been for her. It's really scary when you lose your perceived control of your body – I say ‘perceived’ as it's all an illusion anyway. And in the meantime, I find myself turning to the same treatments Mary Webb did - restful time in nature and vitamin supplements. There are no easy answers, and I find myself having to rely on a lot of anecdotal evidence, which is always a risky venture. But I also realise that fighting it is not the way forward either – sometimes the best thing to do when you are losing control is to let go and let God, as they say in recovery. Instead of clinging on for dear life, let go and allow something bigger than me to drive the boat for a while. In the meantime, all I can do is to stop trying to paddle upstream, and enjoy the view as it drifts by.