It can happen to anyone...

I didn't ask to be ill.  I didn't ask to spend years of my life caring for sick family members, who through no fault of their own became ill.  I didn't ask for any of this.

And that's what people don't understand - how easily it happens.  I started off with weird aches and pains, crippling fatigue, feeling that the plug had been pulled on me.  I went to the GP who discovered my blood pressure was through the roof.  'It's your weight,' he said, with a shake of his head.  'You've got to lose weight.'
So I lost several stone in weight.  And the pain and fatigue persisted, and my eyes started acting weird.  I was referred for a CT scan which came back clear.
'That proves it's not MS' smiled the doctor.  Maybe it was meant to reassure me.  But I knew that a CT scan didn't actually reveal MS.
Time dragged by.  I found it harder to do simple things.  Like carrying shopping.  And if you can't carry a shopping bag - how do you do your shopping?  Answer: you don't.  You struggle.  You ask other people to help you.  And they do - if they can.  And if they have the time.

I knew I was in trouble with my vision... part of it just disappeared one day.  Turns out - it's optic neuritis.  Often linked with MS.  I have had two bouts of this and lose much of my colour vision.  I didn't do anything to make this happen - it just did.  And the pain and fatigue were rumbling away in the background, too.

Eventually I saw a neurologist, a registrar.  Lovely man.  Very helpful.  Promised to do all sorts of tests... and then was overruled by his superior and I was discharged.  My eyesight was 'wrong'.  But that was apparently quite normal. 

Eventually my eyesight crashed.  Not optic neuritis this time, but something rarer, more difficult to treat.  I will almost certainly lose most of my sight eventually.  The medication is toxic and terrifying.  Are the side effects worth it?  The jury is still out on that one as far as I'm concerned.

And finally, I was sent back to the senior neurologist, who insisted I had discharged myself.  Eventually I get a lumbar puncture (and it's a sign of how desperate I felt that I was actually pleased to have it done!) and lo!  There are things in the spinal fluid that suggest I may indeed have MS.  We don't know for sure, but it's a step closer to getting some answers....

But meanwhile the pain persists.  How can they call it aches and pains?  I know the difference between something that aches and the sort of pain I'm in.  I can't see properly.  I no longer drive.  I have become an expert at trying to adjust, trying to make the most of my vision, battling the butcher, bakers and candlestick maker to get help - some help - any help. 

I am not a scrounger.  I can't help being ill.  I don't actually like being ill.  There is no pleasure in it.  There is no advantage in it for me.  I would be better off financially if I were fit and well.  I would be better off emotionally, physically.... the list goes on.... if I were fit and well.

But I'm not. 

And the lesson here is that it can happen to anyone.  That's what people just don't realise when they demonise the disabled.  Yes, you can turn us into the 'Other' you can make us faceless, workshy, lazy scroungers, and you can make our lives hellish. 

But one day - and that day might not be so far away - it can happen to YOU. 

And then you'll sing from a different hymnsheet.