more and more circles

My struggle to get the local council to understand my predicament are still rumbling on.  Nearly a year ago the occupation therapist said I needed a shower.  Fine. Paperwork was completed, submitted approved. 
Then the Council came out to look at my house and said it also needed rewiring.  Okay.  Not.  Because you and I might think that rewiring means putting back what is already there, right?

Wrong.  Rewiring in this instance means having what the Council say you can have.  So... where I have had extra lights put in to help my poor eyesight, this would be made defunct.  I could have an electricity point in the hall or on the landing, not both.  I could have ONE power point in the bedroom.  My immersion heater would be defunct.  So would my washing machine which is outside in an outhouse because there is no room in the kitchen.

So.... the price of having a shower is little light, little power, no means of heating the water or washing my clothes.

One department talks to another.  One department ignores another.  Everyone ignores me.  And I'm not letting anyone start work until this is ironed out.  Telling me 'Oh, I'm sure it will all work out, have it done while there's still the money for it, ' is NOT  enough.   I don't want to wander round my house with a torch as the price for having a shower.

Neither is telling me, 'Well at least they've approved the shower.  You should be grateful for that.'

Because a hypothetical shower is no shower at all.  Rather like a hypothetical win on the lottery. 

Ho hum....

Going around in circles....

Okay, I stumble a bit when I walk.  I can't see very well.  I'm not very steady.  I fall sometimes.  Recently I ended up in a massive altercation with a Tesco trolley on a travellator.  The damned thing wouldn't come off, the back wheels reared up into the air and the whole thing crashed down on me. 

I'm not a regular visitor to Tesco's.  It's too big, and I'm exhausted just visiting an aisle or two.  But Christmas is coming, I hadn't been out in ages, and I thought well, I'll make the effort.    Now I'm sorry that I bothered.

To be honest, I don't like going out at all much any more.  I am fed up with people crashing into me, then glaring as though it's my fault (I am the one with the stick after all).   It didn't use to be like this.  People would help me not so long ago.  But things have changed.  I am one of the 'other.'  I have been demonised.  And once you relegate people to the 'other' it's easy to dispose of them.  Because you have already taken away their individuality, their worth as human beings.

I like to think I still have worth.  I was a good mother, a good grandmother.  A good mother-in-law... maybe not a very good daughter, but that's another story.  I am still good at my job (though it gets harder and I have to become every more inventive in order to manage.)  But today everything hurts.  My arms hurt so much I can't even use my walking stick.  It's too painful.  And the dark evenings are a nightmare because my night vision is much worse this year than last year.  

I have given up on my voice recognition software this evening.  It is well and truly in a world of its own.  When a walking stick becomes a 'working sick' I know it's time to go to bed....

The problem with chronic illness

People only see a tiny part of what my life is like.  I go out occasionally because otherwise I think I would have cabin fever, and I pay for it for days afterwards.  Mostly I plan these days out with great care, always prepared to give it a miss if I feel too tired or in too much pain. 

Before I go out I put on my makeup.  Then I get someone to check it - it's a good job I have a memory for faces, because putting on make-up is a bit slap happy (pardon the pun) these days.  But I need it.  I don't want to look as bad as I feel.  I certainly don't want people to feel sorry for me.  Sometimes I put make-up on when I'm in the house on my own because I don't want to feel sorry for myself, either.

When people tell me I'm looking well I'm actually pleased.  I don't want anyone to say 'God, you look a wreck!'  I feel a wreck already, I don't need reminding of it.  And I tell myself constantly, while I'm out, that I will have the next few days/weeks to get over this, so I'm going to enjoy it now.  I pretend I can see things on supermarket shelves.  Occasionally I look at ridiculous things I would never consider buying, but it makes me feel normal.  And I so much want to feel normal. 

But this is quite different from other people - including the DWP and all the various powers that be - assuming that because I am standing there, looking at something, that I can actually see it.  I can't.  I wish I could.  I pretend I can. 

Unfortunately everyone now considers themselves an expert on disability, and in particular on 'scroungers.'  The media has fuelled this with its weasel words, and it strikes a terrible fear in my heart.  We are becoming outsiders.  When I was young, anyone with a disability was to be treated with consideration and respect.  Now, as I hobble along, people shove me out of the way, muttering unkind words I won't repeat here.  Well why not?  The Daily Mail says such things.  The politicians say them too. 

But what they all seem to forget is that becoming ill doesn't make you less of a person.  In my case it has made me grow in inventiveness, finding ways to get around problems just so I can function.  The disabled, generally speaking, are very good at this.  It is a mistake to treat us as people with no thought, no interest other than scamming money from the taxes of hardworking folk.  Because I am a hardworking person.  I still work.  I didn't become a different sort of person just because I became ill. 
In spite of my disabilities, I am keeping going, because to stop is to admit defeat. 

And I will never do that.

How naive I was....

A couple of days ago I posted about the difficulties of getting a prescription for some new medication I am supposed to take to prevent me going blind.  I somehow thought, once I had the prescription, that my problems would be over.  In fact, they are just starting.

I waited a few days, then rang the pharmacy to check the tablets were in stock.  'Erm...some of them,' they said.
'How many?'
'Thirty six.'  Okay, I thought, that's 18 days supply.  I can wait and then someone can pick up the whole prescription when the rest come in. 
'When are the rest due?'
'We don't know.  The suppliers are out of stock.  They can't get them.'
I took a deep breath.  Counted to ten.  'So what happens now.'
'Well, you've got enough to be going on with...'
True.  But I don't want to take tablets knowing I am going to run out entirely.  That opens a whole can of worms and a lot of other problems. 
'Well what can be done to solve this problem?' I asked, trying to be helpful. 
'We could order a few months supply next time, if you're going to be on them a while, only we don't like to do that...'
'Whyever not?'
'Because they're expensive.'

And this is the crux, ladies and gentlemen.  Expense.  Never mind that eyesight is one of the most precious things we can have.  Never mind that the doctor is happy to prescribe it.  The pharmacy (the pharmacy!!!) are not happy about ordering it in.  Because it's expensive.

So now, on top of worrying about the government's welfare cuts, even the local pharmacy is deciding that those who are ill are somehow 'unworthy'.

Can't they see?  The only reason they are there, in our little high street, is because people who are sick/ill/disabled need to have their prescriptions filled.  Otherwise we'd all go to Superdrug instead. 

If they start making judgements like this, then some of the first people to lose their jobs look likely to be the bloody pharmacists!

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!

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.