An update of sorts

I haven't blogged here in a while.  Partly because so much else has been going on.  Partly because I am feeling too rotten and just turning over in bed is all I can cope with.  But my brain is still active, rest assured of that. 

Anyway... to update on the shower.  They win.  I cannot keep it up any longer.  At one point I thought I had won, only to encounter workmen who believed I had concrete floors upstairs (any fool can see they're made of wood) and that it would be okay to saw through a few joists.  It won't .  Trust me.  I don't want to find one side of the house down in the garden.  

But I did have a win of sorts, with the DWP.  I finally won an  appeal for DLA that has been rumbling on for YEARS.  After several tribunals, I finally got what I wanted, which is great.  I wish I could say that I've been celebrating, but I haven't.  Because although I've 'won' in some respects, it isn't over....

Let me explain.  Firstly, the DWP now appear to have lost the entire appeal.  They have no record of my first claim, nor the appeals that followed,and they certainly have no record whatsoever of me winning anything.  So actually getting some back-pay is a long way off.

Also, I now have to tackle HMRC to get my tax credits amended for the appropriate period.  After all, if I was entitled to DLA for that period, I was also entitled to slightly higher tax credits.  But no.  The leviathon that is HMRC says it is only obliged to refund back to the start of the present financial year.  And my claim - thanks to inept tribunals and the idiots at the DWP rumbled on for years in spite of all the evidence. 

'Well,' I said, trying to sound reasonable, although in truth I was tearing my hair out, 'Surely there's something I can do?  I must be able to appeal?'
'Oh yes,' they said, 'but.... you might have to attend a tribunal.'
I took a deep breath and counted to ten.  'Fine,' I said.  'I'm used to those.  Put me down for a tribunal then.'

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. 

And so it begins...

I've called this blog 'Yell in the Dark' because that's what life feels like at the moment.  One long round of me endlessly yelling, trying to get people to listen.  Because although I can't see the world around me like I used to, I know that people seem to be sleepwalking towards massive changes in society - and that when they finally happen, these very same people are going to turn around and say....'What the hell happened to   Why didn't I know?  Why didn't I notice?'

Well I'll tell you why nobody noticed - because they weren't looking. Now I'm going blind, yet I can see it.  But that's because I am looking.  And what I've seen is that over the past couple of years, the disabled have been very cleverly depersonalised.  Oh, people still know we exist, but not as real people.  Only as scroungers, a burden, something that needs to be got rid of.  Preferably permanently.

These latest government proposals, put forward by men who have never had a real job,, never lived in the real world, fill me with dread.  Because they sound so... well, reasonable.  'The disabled will be protected' they say.  The 'real disabled...'  only who gets to decide who joins this group?  If the sadists who work for Atos have their way, it will be nobody. 

And this is what people fail to understand... I call it the Law of Unintended Consequences.  Let me show you how it works:

Stage 1.  We will get rid of the scroungers.  Everyone nods in agreement, because let's face it, nobody likes a scrounger, do they?

And this leads to Stage 2:  You are not ill.  Therefore you are a scrounger.  This is more worrying.  You know you are ill.  And you know you are not a scrounger.  You would like very much to have your old life back.  But you can't.  And there is little out there medically to help you.  Besides, your day is filled with trying to do simple things like finding your way around, or learning whether you've switched the cooker on or off.... but suddenly you're one of the bad guys.  You're part of the problem.  That can't be right, can it?

So you have to fight it.  You have to appeal.  And you still have to live, and function.  And suddenly it takes over your life.  You've found yourself on a side where you never thought to end up.  And inside your head you start yelling, 'Listen to me!' only of course nobody's listening.  Because you, my friend, have become one of the 'Other'.  The scroungers.  The problem.

But this is how the system works.  How it's intended to work.  People who know you are horrified.  'But you're ill!' they say, 'We know you are.' 
I'll let you in on a secret, shall I?  The government knows you're ill too.  They just want to cut your money.  And they reckon it's much easier to take the dosh from a blind person, or a man in a wheelchair, than it is to ask Vodaphone to cough up what they owe in taxes.