ME and fibromyalgia is a killer combination, and one that few people understand. As yet, there is no known cure, and in many instances no known cause. Some people, as I am able to do, can trace it back to a viral infection that had somehow screwed up the immune system, thus launching into a destructive loop of residual symptoms caused by the virus and attempts at a cure, which in turn sets off the residual symptoms… a crude description but you get the picture.
Both ME and fibro are cyclic by nature.
Take ME. One day will see me feeling able to leap tall buildings in a single bound (OK, perhaps I exaggerate but at least able to function on some level) – on another the act of moving into an upright position or staggering as far as the shower feels more than my bones, flesh and blood can hope to achieve.
And fibromyalgia pain is no easier to pin down. One day what is little more than a dull ache will be excruciating agony on the next, and peripatetic by nature; so that you never know where it is going to strike. This is a nerve pain that no amount of standard pain killers seem to tackle. Prescription drugs, on the other hand, often remove all ability to function as a human being: i.e. it’s like trying to function in a grey fog where the finger tips no longer feel and the brain no longer computes the simplest of things.
It is almost as if you are consulting Douglas Adams’s Hitchhikers Guide. It goes something like:
“Oh … someone is talking? Are they talking to me? I think they may be. What did they say? Something about … oh, hang on, let’s rewind that … ah, yes it was something like ‘Do you want a cup of tea’. Hm. Do I? Not sure. Tea? Hot beverage. Am I thirsty? Let’s see, yes … mmm … I think I may be. Open speech function – and what comes out is something along the lines of … err… what? Tea? — Oh — err — yeah … okay … err… Did someone mention tea?”
A thought process that you would usually take a split second suddenly requires ten seconds and more to compute. By which time the askee has either decided you are congenital idiot or else assumed you didn’t hear or worse, are being unspeakably rude in ignoring them and so they stomp off in a huff.
I would not like to say that all who suffer with these ailments have the same reactions to medication that I do. It does vary hugely from one person to another. I have been told that I am one of the rare few who do not metabolise drugs well, hence why my reactions to them are extreme. People, I was told, pay good money for the same kind of result. Phooey on that, I say. Lucky them. I would much rather be a little more ‘normal’ and retain the powers of coherent thought; after all, it is a rather necessary part of being a writer.
A while ago, with no answers of any import available from the NHS, I consulted a private specialist at the local Nuffield Institute. The basic crux of his diagnosis was that those who acquired ME were invariably high-functioning people who lived very busy, high-stress lives that resulted in their ill health: so much for the flattery. He then informed me, rather grandly and in not so many words, that this was a form of what used to be known as ‘burn out’. His only treatment plan was CBT (Cognitive Behaviour Therapy), which I had already been offered via the NHS with no appreciable improvement in my general well being.
Now I can see the logic of CBT. As a Reiki Master I know that the mind can and does have a huge effect on physical health. Sadly, CBT also has the unwarranted reputation of placing ME and fibro into mental health slots – when in fact research is seeing increasing evidence for there being distinct immunological/chemical causes. But that is another matter. That is food for another rant entirely.
My point here is that I have an appointment at a pain clinic tomorrow and the cynic in me does not hold out much hope. But I shall go because you never know … some bright shining beacon may have an answer that can give me my life back.