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Has tried numerous approaches and spent lots of money, but now believes there is no 'Holy Grail' for his pain and has become more wary.
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Meanwhile, having done all the professional circuit and the investigation and all, in my case you're still searching and hoping against hope, you're looking for the, you're searching for the Holy Grail and, I mean this is now all concertina and encompassed but over a period of time, say like a year and a half, 2 or 3 years when it first started, you'd hear someone say, you know, “Oh I hear you have this problem, have you tried this?” and you would go running off not caring about the money.
Which sorry, was another hit because once you finish up, you're not getting the wages or the overtime and all that, you're getting a basic, what would you call it incapacity, or whatever they called it at that time, money so you wouldn't worry how much you have or not have, and that's where the support of your family and partner came in financially, you would think, oh I haven't tried it, what is it, oh its some cream based on this herb or something, so off you go and pay about £19.99 or something for a wee tube and rub it furiously and apply it, and next day you'd wake up and there'd be no cured, and you'd think, oh.
And so it went on, I mean I must have spent my family and my partner's money, I think over 2 years or, even say to the present, anything between £2,500 to £3,000, I mean I tried acupuncture, costly, reflexology, costly, aromatherapy, which worked slightly but only for a day, and at that time I think I was paying about £28 for three quarters of an hour in '96.
So you tried all these and even to this day when somebody says, “Oh have you heard of this new thing?” Now you're a bit more wary because you know there is no Holy Grail, because you know you've fallen over so many hurdles because you know, you know, it might not work, you don't really build your hopes up so you try them but you're a bit more careful, I mean if its £79 you think well, I've had this for 10 years, I'm not going to spend that money on this cure, if its about £15/£20 or even £30 you think, well I'll give it a shot, but what I'm trying to say is after a number of years and so many false dawns, you're a bit more careful in what you try, especially with the financial limitations.
So I've tried everything and people were amazed that you knew about these things, but you had to if you were genuinely interested in trying to solve your problem. You researched and you went down every avenue, but sadly, to this day, nothing's really worked for me. |
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Has organised his personal care routine to make it as easy and pain free as possible.
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The thing we learnt in the program was, even if you were totally unwell, going to the toilet could be considered as a mobile exercise, you know, they just didn't want you to stay in bed, even, you know, to go to the toilet, they would encourage you to do some kind...
So you just go and there are days where you can't grip your razor and you don't shave, so if you don't shave that instantly sort of adds a minus to you going out, because people look at you and say, “What an untidy fellow, he hasn't even shaved this morning”, you know so... and its gone to where you don't want to explain yourself, so that dictates your day.
If you can't hold the razor and if you can't, I mean I have trouble, most of my like shaving foam, and tablet things are left half open because, there's no young kids now, so I can't unscrew things and I can't, some of the foam caps are quite tight, so you sort of, you can't hold it in your hand and press the... wee things like that, the button for the foam, so you leave it on the shelf and then press it and then try and get the shaving foam on you.
But if you're not in the mood then you just, you know, even the toothbrush is electric because you can't go manual. So you do that, you have a shower everything, you just… Showers at my height, even if other people go in they put it back to my height and my direction because I can't unscrew or do that, so you just press a button, the shower comes on, its set to my temperature as well, they know what temperature I like because its got all markings and things, and then you have that and then you take your time and again.
Another thing, like all my towels are big and fluffy because I can't really dry myself that thoroughly, it takes all that time, so even that is kind of separate, they know which is my towels and all that, you do that and then you just gradually slowly get dressed, and if you haven't shaved and if you haven't had anything to do, you just put your slippers on and not your shoes, and then you waddle down, and then the kettle's always sort of half full or a quarter full because I can't tip a full kettle. |
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Had to leave a well-paid job and was initially reluctant to claim benefits. He finds the benefits system very uncaring.
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Well its incapacity benefit and a few years back, I didn't know, but because of my persistent pain, which is continuous, I mean its not, it doesn't go away and come back, its just something I've learnt to bear with, somebody told me to try for the DLA, and again not, even after 4 or 5 years, not wanting charity or feeling embarrassed, you know, I was reluctant to, but anyway I filled a form and even after so many years it was a shock.
This GP who came in on a Saturday morning to examine me was, I mean he'd be better in a meat market, you know, he was absolutely horrendous, he was, he had no manners, he was like a production worker, you know, like in a big giant car factory, “Oh here's another car body, here's another car body”, and that kind of thing and I tried to explain to him but he wasn't interested.
Again with my work experience and all I'm still quick on picking up signals and body languages. What I realised was, he kept looking at his watch. Then eventually it came to pass that, you know, and he said, “Oh its not up to me”, and all that, I knew I'd failed because... and he looked at his watch again and he says, you know, “I've got 7 of these this morning to do and, you know, I only get paid so much”, and I thought well, I stand no chance because this guy is wanting the 7 multiplied by the whatever payment he gets per person and off he went, and sure enough I got back the thing that I'd failed.
So I just, well I gave up, I thought well if this is how the system works, because what I say to people is don't look at me for an hour or 2 hours because you might catch me on a bad day, which would give you the wrong picture, you might catch me on a good day, which would give you the wrong picture, but there are no good days, there are bad days and worse days.
What I say to anyone is, live with me for about 6 or 8 weeks, then you find out, and not only that, I mean I applied again for the LA and this doctor who came, I mean he was the most understanding, the most appreciative, the most, you know, he took time, he had an interchange with me, and he was absolutely great.
So I got that for, I think the first time it was for 2 years, and my condition is not going to change, so after that it was sort of confirmed for life or whatever they call it, but even to this day as I said to this 19 year old girl when I was first diagnosed and went to the benefits office, I was on a mega very good salary when, I mean and I can prove that with my P60, I was on thousands and thousands of pounds, you know, mega bucks, you know, so much so money was coming out of my ears, and I went and I said to this girl who had been quite facetious and quite uncaring, she went and got her supervisor as well who was another, I think she was from an ex...
A really uncaring woman, and I said to her, “If you two ladies can explain to me why I would want to come down from this level of financial security to”, I think at that time it was £92 a week or something, “if you could explain that to me from a mega bucks salary, thousands and thousands of pounds, I would purposely come down to £92 a week, if you could explain that to me in, you know, understandable language I will take whatever you say”. |
