Age at interview: 30
Age at diagnosis: 26
Brief Outline: Pain due to damage to spinal cord from Chiari I Malformation and syringomyelia. Pain started 1997. Surgery: Essential cranial cervical decompression and laminectomy, 1999. Treatment: Pain Clinic for medication. Current medication: gabapentin (Neurontin), dothiepin, tramadol.
Background: Part time teaching assitant (trained as programmer); married.
More about me...
Discusses the pros and cons of the email forum group.
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You also got to see other peoples queries and replies to them. So you did pick up a lot of information but there was a lot of just sort of patting on the back trying to lift your ego type stuff but it was all, although it was trying to be uplifting with the whole... they are very into religion and praise be and that kind of thing, which don't get me wrong I am a Christian but it was always tagged onto the end of this awful story about some poor child who'd had this condition a million times worse than me and you think, it was far from uplifting.
But I did get the information like the drugs that I am now on from somebody in America from the forum so it was useful as well. But once I was in my higher mood after going onto the Neurontin I decided I didn't need to read two hundred e-mails a day from people who were obviously not very uplifted themselves. So I stopped using the forum.
Describes the side effects that she has with Neurontin (gabapentin).
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Weight gain is one that's attributed to it because it apparently increases your appetite and also can make you retain water. I get a very dry mouth. Some of the symptoms it's very difficult to tell because I've, it's been so long since I haven't had drugs of one sort or another, it's difficult to tell how many symptoms I have from my condition and how many are from the drugs that I take.
Very dry mouth, I can choke very easily and part of that could be the restriction in the neck and part of that is the fact that I'm so dry from the drugs. Concentration and short-term memory, not sure again whether it's drugs or whether it's the condition. I think it's most likely to be the drugs to be honest.
I don't see why the condition should particularly affect my memory. It's not that it's disastrous, I mean I have got short-term memory, but it takes me a long time to remember people's names.
I double book myself in my, somewhat slim, social calendar, I still manage to double book myself and things because I can't remember that somebody's said in passing 'Lets do something on a Friday night'. I end up doing three things on one night and nothing for the rest of the month kind of thing. But people have got used to me now. 'Write it down'. Mum bought me a notice board to put up in the kitchen so I didn't forget things quite so much.
Finds the pain clinic very helpful with her medication but would prefer to see the same doctor...
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So I literally haven't seen the same doctor twice. Most of the time they'll want to examine me, but I'm not quite sure why that's necessary because you can't see anything from the outside apart from the scar. And then they'll talk about my pain, whether it's improved. They'll check that the medication that I'm on is what they have on record, so what they last gave me, kind of thing, or whether it's been upped or changed by my doctor.
They'll ask if there's been any change in the actual pain itself and any improvements, anything worse. And sometimes, when you get a good one, they'll ask about anything else that I want to know. The last doctor I saw at the pain clinic was fantastic and we talked about everything from what drugs I'd need to change if I wanted to become pregnant to seeing a genetics consultant if I wanted to try pregnancy to more general things about my condition as well.
He talked about absolutely everything with me. I suppose some of them you just feel more comfortable with than others, which I suppose could be an advantage of swapping round all the time. But, you can be in there, they usually up my drugs in one way or another, change them or up them. So I'm on quite a cocktail now. But it's just, you know, I can be in there for anything from ten minutes to forty minutes depending on the doctor that I see. It's mostly talking and then go and get your prescription.
Pretended to accept her back pain to hide her feelings from others but gradually did come to...
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I think I pretended to a lot before I did. I'm not somebody who shows how I feel about things very much. Most of my friends, I think that, I suppose I'm fairly strong character and they come to me with their problems and sometimes forget that I actually probably have more problems than they do. But that's just the way I am.
I stick the veneer on first and then come to terms with it afterwards. And I suppose that's a kind of way of coming to terms with it anyway, because the more you keep telling yourself something doesn't matter, the less it matters. You can convince yourself of anything if you want to. And I guess I do, I've said it so many times that you get used to it. So I did get used to it. 'Cos I didn't, don't want anything to beat me and this certainly isn't going to. So you do, just, I suppose pretend first and then eventually you'll be true.
Her family encouraged her to get a job as a teaching assistant which she finds hard work but...
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The drugs I was taking, the earlier drugs especially, were affecting my memory. So it was impossible to study, so I never finished my degree. So I didn't really know what to do from there 'cos I was sort of in between doing things anyway, so teaching assistant seemed like a good idea, because they think my condition is possibly genetic so, until they know, I don't wanna have children, because I know there are worse versions of my condition, so I don't wanna pass it on.
So, we're kind of thinking that we might adopt and, if we do, working with children is a great idea to, you know, to show that you know how to deal with children I suppose. So that's why I went for a teaching assistant job in an infant school and it has helped because I get very tired and very ratty and I usually sleep after I've worked for the morning. It gives you purpose, a reason to get into bed in the mornings, to carry on living and, although my drugs don't take away my pain at all, they do help me to live with it, because it's not the focus of your mind.
I mean I have five and six year olds pulling on my arms and it hurts, it hurts like hell, but I'm enjoying myself so it doesn't matter and I can, that's the difference with the drugs. Before I was taking these drugs, it would've mattered, everything mattered. You know, I'd walk around holding my arm, because nobody would, bang into it. But with these drugs I can cope with it as long as I'm doing things that I like doing.
Don't let it beat you. You have got to get on with your life otherwise it is not worth being alive. So find a job you can do even if it is only a few hours a week if it is only voluntary work or whatever anything is better than nothing. For all that I had great family and friends when I wasn't working it was depressing because I had nothing to talk about. Daytime telly, great, nobody else had seen it anyway because everyone else was at work, you become bored and boring if you don't do anything.
My job absolutely shatters me out it really does but you know the summer holiday we just had I hated the summer holiday, I was bored stupid I had nothing to do because there are so, I am limited in what I can do and there didn't seem anything to do. Whereas at least if I go to work I enjoy the company of the people at work I have got some good colleagues and I love the kids and it gives you a reason to get up in the morning and something to talk about afterwards so it is worth it.
Reflects on how her life differs from what she had expected it to be.
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I'm lucky that I bought my flat before I got ill, before I went to university for that matter, because I worked for seven or eight years before I went to university. If I hadn't bought then I'd, dunno, I think we'd still be living with our parents, because there's just no way.
I mean my husband had to take a break from his degree as well, so he hasn't been earning decent money very long. You know, he finished his degree four years later than he should've done. So, you know, we haven't got any savings. We haven't had any foreign holidays. As I say, we haven't had any holidays, apart from visiting family, since our honeymoon five years ago.
So, financially, yes, it's affected us big time. Because of the kind of benefits that I'm on as well, because I do get incapacity benefit, I don't, I'm not entitled to help with prescription payments and I take rather a lot of drugs, about four to five prescriptions a month. So it's '6.20 a time, so that's nice, especially when you can only work twelve hours a week.
The incapacity benefit helps, it nearly covers the mortgage, not quite. It doesn't obviously cover anything else. Yeah, financially I expected things to be a lot different by now. You know, especially having got married to somebody who's also a professional, that would be by now he is just, but as I say, he's only just finished his degree, because of taking a gap because we couldn't afford to pay the mortgage because I was ill. So yeah, financially we're just completely different to what we thought we'd be.