The horrors of trying to go shopping....

Last Friday my husband suggested taking me out to buy some clothes.  I was looking and feeling a bit better, and if I felt up to it, he was happy to come with me.  My clothes are in a shocking state (being large I am limited in my choice of retailers) and I desperately needed new trousers.  We got a train, and the shop I needed was just a kick in the bum from the station itself.  Great.  What could go wrong?

Well, the shop, (It-that-shall-not-be-named) for a start.  Yes, they allowed me to use the disabled cubicle, but my husband was not allowed to come in to help me because...'We've had complaints about men in the changing rooms.'
Okay, could he at least sit outside (they used to have a settee nearby where people could wait) so I could show him my clothes to check if they were okay?  I explained my vision is very bad and I wouldn't be able to see for myself.
No, that wasn't possible either.  Because.... 'they'd had complaints about men sitting NEAR the changing rooms.'
In fact, they'd even had complaints about men being anywhere near the entrance to the changing rooms.  The best they could offer was that my husband could sit in the shoe department and wait for me there.  Which meant I had to change by myself, and then leave the changing room to show him my clothes - highly embarrassing when most of them didn't fit.  I was made to feel as though I had walked into their shop with some sort of pervert in tow.

I tried to explain that I needed help changing, but the assistant was unmoved.  'I'll help you,' she said.  Only I don't like strangers seeing me undressed.  I doubt she would like it either.
Anyway, while I was struggling to manage by myself (I really did need new clothes or I wouldn't have bothered) some other women came in, soon followed by their adult sons who stood at the door of the changing rooms for ages, chatting away.
I queried this - why could they be present and not my husband when I needed him - and was told that 'they were the customer's children.'
I explained that my companion was my husband of many years and this seemed like one rule for some and a different rule for others.  I was then told that my husband could also stand at the entrance to the changing room now (only of course, with two adult males already there, there wasn't any room.)

Well, I struggled with the clothes.... needed a pair of trousers in a certain size but nobody could possibly look in the store room to see if they had any.  I found three tee shirts I liked and asked them to put them to one side and I would definitely buy them later.... only of course, when I went to get them, someone had removed them and nobody knew where they now were.  (You might think they had been returned to the clothes rails, but no.... heaven knows where they went, outer space, probably.)

So the upshot of all this is that I spent ONE AND A HALF totally useless hours, struggling in that shop, my husband made to feel like a peeping tom, and came away with nothing.

Except of course, the resolve never to go there again.

This story has a happy ending.... eventually I visited another shop  and the difference couldn't have been greater.  Nothing was too much trouble, trousers were found in the stock room, and I came away with exactly what I wanted.

 Now why the hell couldn't the first shop - It-that-shall-not-be-named  -  have been more like 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.