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HEALTH Matters - May 2011

I am relapsing at the moment, waiting to hear from the hospital and it’s getting hot - all things guaranteed to make me grouchy. However, as my neurological paralysis increases and my daily routine becomes, consequently, much more difficult, I am being driven INSANE by helpful comments, such as:

Maybe if you tried harder …
The power of the mind is amazing, you know …
Wouldn’t exercise help?
If you practiced …
Have you thought of/tried …

This from carers, therapists and others who really don’t know me at all but still seem to think they have the ‘scoop’ on the illness I live with day in, day out (13 years and still clocking ‘em up) and they have NO experience of whatsoever!

I try to explain. You know how when you flick on a light switch, a connected light bulb comes on? Well, what if the wire between switch and bulb is cut, will the light still come on ... even if you keep flicking the switch: on, off, on, off, on, off? NO, right. And, if you want it to happen a helluva lot, with every fibre of your being? Still a NO, huh?

So, consider this: my brain is the switch; my body is the light bulb; my damaged neural pathways are the wires conducting information. Here’s the issue, confirmed repeatedly by incredibly official NERVE CONDUCTION studies in really serious hospitals by ludicrously highly qualified and experienced doctors:

My wires are fried.

Switch (brain), all good; current (information) flowing; wiring crap. Messages sent. Not received. Irreparable. I can flick the switch all I want and ‘will’ something to happen very hard but until they can fix the wiring (my neural pathways), I am stuffed.

So, whilst I know you want to help me and I appreciate that, really I do, you need to understand that I am freakin’ neurologically paralysed, people, not lazy, stupid, unaware or lacking the inclination to live the fantastic life that I previously had …

And, BACK OFF before I explode!
switching off
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