Tuesday 20 August 2013

An idea of what it's like to be with me.

So as to save lengthy explanation, I'll tell you straight out. I have MS (multiple sclerosis). It's not contagious and it's nobody's problem but mine. If you want I can go into more detail than you ever thought possible from a layman. The truth is, MS is such a varied condition that I know more about my MS than my neurologist. He knows the principles and effects but I know what it's like to have my MS (I know that sounds a little possessive, but it's undeniable - nobody else can have my MS. 

It's auto-immune (like HIV) but I can't transmit it to anyone else. It just sits there in me, screwing up my life. 

Nobody knows why lucky me got 'the gift that keeps on giving'. It looks like it's genetic in some way, but not hereditary. 

The main effect, as far as anyone who knows me  is concerned, is fatigue. That won't mean much to anyone who doesn't have MS. When it kicks in, I am pretty much buggered. Worse still, I have to try to estimate when I will run out of steam. 

To preserve energy, I use an electric wheelchair (I call it 'Old Smokey') most of the time. I generally don't need to, but it helps me to get around faster and function better for longer. 

I can walk - about 75m - but I try not to too much as it saps my energy.

My balance is screwed up, so when I walk I use one or two sticks. They stop me falling over as well as making a fashion statement(!). Well that's not entirely accurate; they help stop me falling over, but they're no substitute for energy. If I'm tired I'll fall over more easily. No problem.

I can have sex - not as enthusiastically as I used to, or in as many positions, but I can fuck. 

My brain is as sharp as ever. I was in the middle of an MSc when I was diagnosed; I completed it with a Distinction. So screw you MS. I am also thinking about doing a PhD.

I don't want a carer. I employ people to do the things I can't.  At some point it is possible that anyone in a relationship with me will be a de facto carer - this will enable us to do more together. Sub-optimal., for sure, but it's one of those compromises. 

I still drive. I have a car with hand controls. I was a brilliant driver. Now I'm just an ok driver. 

I often use inappropriate language to describe myself. If me calling myself 'cripple' offends you, I can try to stop. Maybe. No promises. 

I am very aware of the risk of any future relationship being co-dependent. If I appear guarded or hesitant this is probably the reason. If you think I might be a 'project', that you can 'fix me', don't bother. I'm not broken. Bowed but not broken.