I've been away

Well, not anywhere nice unfortunately.  Just unable to muster any sort of energy to do very much at all.  Meanwhile the level of bile and general hysteria is rumbling on but I seem to have noticed a little sea change.  Perhaps it is to do with the fact that the vile face of disablism is finally becoming apparent.  Look at the awful scenes in the Panorama programme.... then look at the 'care home' providers who ripped everyone off and then left the very people they were supposed to help facing homelessness.  Because this is what happens when you are driven by money.  People no longer matter.

Are people finally beginning to see the human face behind the disablism?  Few of those young people brutalised and tormented at Winterbourne would eveyr be able to work.... are they just scroungers?  Workshy?  Or can people finally see the human face?  I live in hope.

In Ancient Rome the Stoics argued against slavery not because it was wrong per se (in their eyes), but because it was morally harmful to the slave owner.  That's an interesting  take on it.... do you think we could persuade the Con Dem coalition to drop some of their planned cuts on the grounds that it will be morally harmful to them (rather than just physically harmful to us?)  Now there's a thought. 

I'm not going to hold my breath though. I can't.  It hurts too much.

There is no alternative.... and the mysterious Plan B

When I was young, I can remember arguing with my father quite a lot.  He wasn't normally a very patient man but when it came to talking about life he seemed to have endless patience during my teenage years.  His questions were often simple, but the lessons they provided were profound and I shall always be grateful to him for that.

Story Number 1
So when I was complaining about something more than usual one day, he simply asked 'Why don't you change it then?'
'I can't.'
'Why not?'
'Because I don't have any alternatives....'
Slowly, patiently, my father explained that there are always alternatives.  I may not know what they are, I may not like them, some may not work (but some certainly will).   'There is always a different way of doing things, there is always a better way and it's your job to find out what that is.'

Story Number 2
Another day, I was complaining that my life lacked any direction.  I didn't know what I wanted to be, I didn't know what I was capable of becoming (the jury's still out on that one by the way) and I lacked any sort of plan.  The plan I had carefully nurtured through High School wasn't working out.  And there was nothing I could do about it.  Or so I thought.
'Go to Plan B,' said my father.
'I don't have a Plan B,' I wept.
'Ah.  But you should always have a Plan B for times like this,' he explained.
'I didn't think I would need it,' I sobbed.
He smiled, shook his head.  'I know.  But none of us knows what the future holds, you can't have just a single plan and stick to it.  You must always have a couple of extras, just in case.'

My father knew what he was talking about here.  Although he worked all his life, fate had thrown him a couple of horrible blows, and if anyone knew about alternatives, and Plans B through to Z it was him.  So I listened.  And it helped me to grow up.

Fast forward to the present day, where apparently well educated politicians have the gall to stand up and claim 'There are no alternatives' 'There is no Plan B' and I realise what a bunch of childish buffoons they are.  Incapable of listening, they may have been expensively educated but have come out the other side knowing nothing of those they want to rule.  They simply aren't interested.  Ruling is an end in itself, they can't - won't - see beyond that.  They certainly don't think that history has anything to teach them on the subject.  But it does....

At the beginning of the twentieth century there was a powerful ruler of many people, called Nicholas.  He ruled over millions whom he never understood.  He thought he was invincible.  He certainly never thought he needed alternatives or a Plan B.

And look what happened to him. 

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. 

Got my tablets...

When you're long term sick, the last thing you feel like doing is arguing over your tablets.  But I knew I was in for some aggro... having a rare disease means that little is actually licensed for treating it.  You have to cross-over and use drugs intended for some other condition.  Normally, that isn't a problem.  For years now, for example, drugs developed for epilepsy have been used to treat depression.    However, if the drug you are prescribed is expensive, it becomes a different game. 

Nobody wants to foot the bill.  Yes, it may help you get better - or in my case prevent me getting worse - but it's the cost, you see.  The immediate costs. The cost to me as a patient going blind, or the costs to a society where I can no longer function properly aren't even considered.  Besides, according to the media I have become just another statistic: a drain on the public purse, a scrounger.... it's too depressing to list.

I was fully expecting some aggravation with these tablets - known to be scarce, known to be expensive - the moment my consultant mentioned them.  But I rang the surgery last week and was told to phone back yesterday.  Which I did.   They said they would check it out and phone me back. 

Yes, I thought, cynically.  I can just see that happening.

And I was very pleasantly surprised.  Because a few hours later I had a phone call from one of the doctors (the doctors!!!!! ) telling me everything was sorted and the prescription written.

I could have kissed him, I really could.  Having psyched myself up with all sorts of arguments it was lovely to be proved wrong, to have things running like clockwork!