Monday, 27 September 2010

The insubstantial enemy

For me, the most difficult part of ME has been an inability to fight back.

In the past, if something has upset me, I deal with it.  If a situation isn't working, I fix it. I'll admit that sometimes I get lazy and it may take a little while for me to change the situation, but I don't feel comfortable if things are wrong and I don't at least try to do something about it.

But where do you start to fight with ME?
I'm a social person at heart and feel miserable when I get lonely.  Yet having people visit me becomes exhausting incredibly quickly.  At the weekends when Mr Wench is at home and awake during the daytime, I become so tired just from the extra person being there or the noise from the television in the background.  Going out to visit other people now tends to require me to use the wheelchair, and although this means I can buy a little extra time to add to my mental strength at the cost of my physical strength, it still only grants a short visit and of course ensures that I will spend the next few days at least unable to move.

I'm a terrible patient.  I get frustrated and impatient very quickly and I like to be able to do things for myself.  I watch my body getting weaker each month and want to exercise to reverse the damage.  Yet exercising even just a small and gentle amount makes me more exhausted and the resulting recovery time leaves me more deconditioned than I started.

How do you fight an enemy that cannot be fought?  You can't work at getting better, as the effort you put into recovering worsens the condition.  I find that in an odd sort of way I feel relieved on the exhausted days.  On the bad days there is absolutely no denying in any way at all that I am physically ill.  I can't fool myself into thinking that I just imagined it and that there's not really anything wrong with me.  On the good days that is more difficult.  Having to stop before symptoms are in control means that it is easy at times to wonder if you are just under some delusion.  The days where you misjudge the energy you had and go too far are almost reassuring.

Thank heavens for technology!  I think I'd go crazy without the internet enabling me to contact people.

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