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Reached a point where she decided that she wasn't going to let pain wreck her life.
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A lot of the people who I have spoken to who have chronic pain have had almost an epiphanal moment where they've consciously decided this will not wreck my life, I am not going to sit around moping, I will do what I can. And I will enjoy what I'm doing.
Did you have a moment like that?
Yeah I did, I did. I definitely did. Because I'd had all the depression as well and, I don't expect somebody who, you know, who had developed chronic pain last week to be able to treat, to deal with their pain in the way that I deal with mine. I'd be enormously impressed if they could. I would take my hat off to them.
But there's, there's an adaptation period which is, which is extremely psychologically painful as well as physically painful where it does feel as if your life is over. It literally feels like that. Because you can't do anything without it hurting and because before then the things that you do didn't hurt. That seems like just running into a dead end entirely and you can't see a way out.
And you do go through of this "Why me? What did I do to deserve this happening to me?". And in the end, that's a pointless question because you can't get an answer to it and it's just, you know, life's a bitch. And these things do happen to people, and awful things happen to all kinds of other people as well, they're just differently awful. And, you know, you only, I started dropping into truisms but you only come this way once and you're a long time dead.
And it is a waste of a potentially enjoyable life to spend the whole of the rest of your life in a deep depression about how awful it is for you having to be in pain all the time. You do have to deal with the pain on a daily and sort of second by second basis. What you don't have to do is think that it's awful. |
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Changed to a different anti-inflammatory drug which doesn't attack the stomach or gut because she had developed irritable bowel syndrome.
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I've changed, yeah. Medication, painkillers I have changed several times. I've forgotten exactly what the difference is, I know that there are two types of painkillers and what I am now on and have been on for many years are anti-inflammatories.
And the last lot that I was on, that I had to come off because they gave me IBS were you took one in the morning and one at night and they were sustained release. And within 10 minutes you knew you'd, you knew you'd taken one and this carried on lasting and sadly, I must have been on those for six or seven years and eventually they made me so ill that I had to come off them.
And I'm now on something called celecoxib or Celebrex, which makes it sound like a breakfast cereal. And it's an anti-arthritis drug. It's for people with rheumatoid arthritis and I take half the maximum dose of that. Again one in the morning and one at night. Unlike the previous ones though, the benefit is you don't have to have them after eating because they don't attack your stomach lining. So I can have those whenever I need them. And if I am going through the acute phase I will sometimes up the dose to three. I don't think I've ever had four in a day.
The first painkillers that I was ever on, and I can't remember what they were, but they were the ones that, that just sort of play with your head so I think that you're less aware of how awful the pain is. And they are, I would not want to be on something like that on a long term basis because they impede your ability to concentrate, whereas the one's that I'm on now don't. |
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Was pinning her hopes on surgery and was horrified when it wasn't an option although now realises that surgery is not always helpful.
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I think, remembering back, that when I was told that surgery wasn't an option, I think it was something I'd been pinning my hopes on and I think I was fairly horrified. Although at the same time I had heard a lot of stories of people who had had operations on their backs and whom it had not helped at all.
There are a lot of back problems on my mother's side of the family, she's one of seven and all of them to some degree or another have back problems and maybe three of them have had operations and it's not been plain sailing. So I knew that surgery was a very drastic solution and I certainly wasn't going to push for it if there was no guarantee that it would help.
The specialist said that the prolapses, the protrusions in the discs weren't touching the spinal cord, nerve, what have you and had they been, then that would have been what was causing the pain and they could have gone in and cut off the protrusions and... but certainly my current osteopath who I've been seeing for eight years has also said surgery would do you no good at all, there's nothing they can do surgically to improve it. |
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Thinks she would have come to terms with pain sooner if she had been told that she had to live with pain.
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One of the biggest problems that I had in coming to terms with my condition was that for several years people told me I would recover. So I didn't then mentally put myself into the position of somebody who will have chronic pain. I always thought "Yes this hurts horribly at the moment, and it's ruining my life and so I put my life on hold".
And I think if I'd been told earlier "This is it now, this is the condition you're going to live with" I would have come to terms with it earlier but people said "Oh no, about another 12 months and you'll probably be alright". So I think it was about three years in before it became clear, I think just to me.
I don't think anybody said it to me. Before I realised that it was never going to be okay, it was never going to get better and, and at that point you can then deal with it and, and live within what remains to you of your life. You have to come to terms with it. |
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Says that her experiences of living with pain have made her more focussed and other people have noticed that she is happier.
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But generally I am, I'm a happier person as a result. Because being in the state of health that I'm in, it forces you to prioritise and to decide what it is you want to do, as I keep saying, within the limits that are imposed upon you.
So I'm quite, I'm focused, and you learn to take pleasure in very small things. I get terribly excited about conkers. I walk out to the bus in the morning and a conker will fall on the ground and they're just such beautiful colours.
So I think you learn to take your pleasures in a, in a narrower sphere. And what is interesting is that I've recently started working on a Union basis, with somebody I worked with in [past home town] many years ago, before I had the accident, and he actually used to take me out on training VAT visits when he was the trainer and I was the trainee.
And I said to him, I think possibly some time in the last 12 months. I said "Am I… You're the only person I know who's worked with me kind of before and after. What are the differences?" And he said "The only thing is you seem a lot happier". He said "you always seemed vaguely miserable before and now you're happier". And I think basically now I am happy with my life. I'm not happy with the fact that I'm in chronic pain and I would give it up tomorrow, you know, if I could be cured I would, I would take it with open arms. But I have learnt to be happy within my limitations, and before I wasn't.
So I don't know where I would be psychologically at the age of 41 had it not happened to me when I was 29. I have no way of knowing but I doubt I would be as, as sort of sorted and stable as I am now. |
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Explains that the Disability Discrimination Act now means that employers have to make reasonable adjustment for people with disabilities.
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The only thing I want to say about work really is how much of a difference it makes to me and the way that I deal with my own disability. That I am so heavily involved in disability policy and helping other people. That's not everybody's chosen way of dealing with their problem, but it works very well for me.
And although it might appear to some people to be immensely altruistic I'm also conscious of the fact that you don't do these things for other people if you don't derive pleasure from it. I certainly, and the fact that I've done that, that I've done this work for five years, has made me extremely knowledgeable about disability employment issues. And that's got to help, you know, that helps anybody's ability to deal with their own problems. They know what they're entitled to and they don't feel that asking for that is being demanding.
It's not, you know, the Disability Discrimination Act enjoins every employer to make reasonable adjustment for their disabled employees. And it's very important to realise that reasonable adjustment is not special treatment. Reasonable adjustment only brings you up to a level playing field with your colleagues and that a refusal to make reasonable adjustment equates to expecting people to work in a dark room with the lights off.
Having said that, with chronic pain conditions, and some other disabilities, I think very much, particularly in the chronic pain conditions. No adjustment can be made that actually puts me on a level playing field with my colleagues because I'm still in pain and because of still being in pain I have very limited stamina so that I am never going to be able to treat work in the same way that my colleagues do.
So as much reasonable adjustment as can be made, has been made, but I think that some people in senior management, well across the department, and across all employees think once you've made the reasonable adjustment that's it. And it is all they can do. There is nothing more that they can do but my life is never going to be the same as other people's. |
