ME, ME, ME, ME, ME

I have concluded that M.E is the most boring 'disability' of the bunch.

I mean - at least only having one leg has the potential to be amusing. ...Though having said that, Heather Mills seldom looks happy. Conversely, Jake the Peg always looked incredibly cheery. Huh. Maybe Rod Stewart had the right idea in marrying Amazonian limbed Penny Lancaster: legs really are the key to happiness. Okay, so maybe they were a bad example. But there are lots of other disabilities that must be more entertaining than the general sloth-sickness that is my constant slumbering.

I only get frustrated with it when "normal" people begin expecting me to do "normal" things. My particular problem is with planning things more than a few hours in advance. That doesn't mean I am exciting and spontaneous - I wish it did - it means that I am irritating and flaky. Because M.E is indiscriminate of favour, it doesn't matter how much I may wish to participate in a planned activity: if my body decides that it will not grant me the energy to achieve my goal then there is nothing I can do about that. I got used to coping with pain years ago, and actually preferred it to the M.E sometimes, because pain is treatable - either with ridiculous amounts of head-trippy opiates or by being a stubborn cow who would rather almost kill herself than give in. M.E isn't like that - it's not really something I can fight in the same way, because it robs me of both the energy and the inclination to protest the symptoms.

I think the apathy is the most anti-social part, because whilst I feel a little bad about letting people down at the last minute, I will stop caring about the change of plan a long time before the other disillusioned parties. I wouldn't handle it nearly so well without the apathetic side-affect though. When the M.E was milder I used to get incredibly frustrated with myself for not being on top form, but now my inadequacies just roll over me these days.

I think the only time I get particularly frustrated now is when I am too tired to be creative - because I can't bear for my writing and sketching to be inhibited - and when I realise how much time has passed without my achieving anything particularly grand. Of my two closest friends during my adolescence, one is studying in New York, where I would adore a visit to, and the other has just gotten married.

What you have to understand is that they were two of the loveliest - but silliest - young women in all creation (perhaps best illustrated by their long-time tolerance of me.) That the first is studying medicine in NYC, and the other is settled with a mortgage and a job in a bank is as appalling as it is surprising. Surprising because once-upon-a-time I was the sensible one people expected things from, and appalling because their lives are so pedestrian - and make me obstinately glad to be unusual, but also feel as if I am doing very little of any import. Publishing a few poems and trying to turn myself into some sort of human gemmological dictionary so I might better understand the jewellery trade is a reasonable attempt given my uncommon situation, but it’s hardly contributing much to society.

I sometimes wonder if I'll do anything of merit. Then of course my ego rears its head and reminds me that "of course I will." Arguing my future employment opportunities with my own narcissism is perhaps not a productive expenditure of limited energy resources. I'd be useless if I was lost in the desert with only one canteen of water. I'd never make it last. I can't restrict myself to necessary use of scarce supplies, be they of life-enhancing energy or life-saving water. I'd also be REALLY fed up that I couldn't have a cup of tea if I was stuck in the desert. I'd be so hacked off that it might motivate me to find civilisation. (I think that of all people, I am the one likely to escape boiling to death in the Sahara purely because my tantrum was forceful enough to overthrow fate.) I think that it would also put me at an advantage in deciphering a mirage from a genuine oasis, because if I suddenly saw a Victorian teashop in the desert I'd know it was in my imagination. The only potential confusion might arise if I saw/thought I saw a Starbucks. Because they get everywhere, and finding one in the middle of the desert wouldn't be impossible.

The M.E would also make it tough being stranded in the desert - not simply because of the strenuous effort involved in trudging over sand and battling heatstroke, but because the light-sensitivity would be difficult to negotiate with the sun both beating down and bouncing back off the sand. (If I was blinded by a migraine I wouldn’t be able to see the spiders. That would be a problem.)

I don't think there will ever be a point where I would even consider wandering into the desert - unless I was hypnotised by Derren Brown and transported there before being brought out of it, all grouchy and tea-deprived.

I sometimes wonder if hypnosis would affect the M.E actually. Is it powerful enough to override some of the fatigue, or is M.E more physical than psychological? Yes, there are lots of physical symptoms, but there are still those who feel it is also impacted by depression/stress/anxiety and CBT (Cognitive Behavioural Therapy) is still a big part of the treatment plan for many sufferers. (Not me, as I have said before I see psychologists as a challenge, and generally see it as my job to 'defeat' them. If I do fool them then I immediately lose all respect for their professional capabilities and the appointment is pointless.)

So, today I have decided that whilst M.E is incredibly tedious, it is better than having either one or three legs, being married to Rod Stewart, or being lost in the desert searching for a Costa Coffee (or equivalent.)

Who needs Open University, when I have the internet and a vivid imagination?