Like using a wheelchair or you know, yeah, people have not I think, not medically because medically they like to keep you as mobile as possible for as long as possible. I think it has been possibly suggested to do certain things but you know it’s one of those things again isn’t it, like making an awful lot of peoples lives so much easier if they just bite the bullet and just get in a wheelchair and do it. But in another way, if you said no.

The thing is if you stop isn’t it. If you stop doing something that’s hard to do it becomes even harder the next time you try and do it. But that’s not to say a wheelchair is wrong. It works for some people. I just don’t know. If I had to say, I needed, really had to do something but I really couldn’t do it, and that was my, well you know, my instrument, but it was something that was going to help me achieve what I really had to do, then obviously I would do it if I really needed to, you know the place it is, at the level of importance.

But I’d do it. I try to keep going as much as possible, you know, it’s so important to try and keep going because otherwise you lose. I don’t know. It’s just you need to, I don’t know. I personally need to keep going.

I use a variety of mobility aids, usually two crutches, one crutch or a wheelchair, depending on the amount of pain I’m in. I know that, the use of these, this equipment has been affected by my spinal complications as well, ‘cos it can mean some days that using crutches is not an option, because I can’t put that kind of pressure on my spine if I’m in too much pain;

It also means that I rely quite heavily on my wheelchair when I’m working because I’m up and down a lot and I’ve got a lot of different jobs to do, so I have to conserve my energy to deal with the pain and to deal with jobs in hand, rather than physically getting around. I think when my pain first arrived in a big way, when I first began to think of it as a huge impact on my life, I was prepared to spend all my energy on making it go away and making it not be an issue;

I fought it very, very hard and for a long time not to use crutches, not to use a wheelchair because I thought that was admitting defeat and saying the pain is here to stay and it’s going to dictate my life. Whereas I think, after talking with my friends and my family, they made me realise that it was actually a strong thing to do;

It was saying that I’m getting on with my life and these aids are just going to help me do it, they’re not necessarily here to stay. There are days where I can walk, there are days where I can’t walk at all and I’m in my chair all the time and I think this is, it’s a strong thing to say ‘When I can walk, I will and when I can’t, I won’t’;

Because it can also be confusing to other people and it means that I do have to explain an awful lot, that my symptoms are primarily pain and that means, when I’m in too much pain, I can’t walk and people find it really hard to get their head round the fact that that can change. So I think it’s a good thing, just to be able to explain it and to adapt to different situations.

With chronic pain, what you have to do is to make sure it doesn’t get into the way of your day to day life more than it needs to. I talked earlier about being able to say ‘Well what can you do’ as opposed to ‘What you can’t do’ and socially, life is pretty good.

You just get involved in different sorts of things but take into consideration that you’ve got your pain and, as I said earlier, theres things you can’t do but theres nothing to stop you and the usual sort of social things, with family, friends, going out to events, things like that.

I mean, if you go to a rugby match I have to go in a wheelchair because although I use a stick most of the time, people tend to still come straight towards you and, of course, if its been a rugby match and they’ve had a few pints, their sense of direction is probably worse than mine and they just bash into you.

So you go in a wheelchair, so again it’s adjusting so you can actually do things. And I have a philosophy that if I want to go and try something, I’ll have a go and if the facilities don’t accommodate you then you have to find out if theres a way of doing it. If theres a way round it.

Because some places you go to, all right theres a new disability act but they’re just not aware of it and sometimes you chat to them and say ‘You know have you thought about putting that there because that would really help?. They’re quite amenable to it because they probably haven’t thought about it and I find if you go in a constructive way and ask and suggest things, it sometimes works.

Yeah, people have a funny attitude about being in a wheel chair, they think it is like their last resort, like my friend who has rheumatoid arthritis would never get in a wheelchair because she might never get out of it and what would people think, the way people treat you when they see you in a wheelchair and people can feel patronised, people talk over you to the person behind you as though you’re not even there.

Whereas to me the wheelchair is an extension of my car, so it means I can drive into town and park and then get out and carry on driving around the shops, which seems very sensible to me, it means I can spend the whole day going shopping by myself because I’ve got a power wheel chair, so I can whiz around, do all my own shopping, be completely independent, pile it all back in the car and come home again with no help whatsoever, which is much, much better than trying to park walking round one shop, which is all I could manage and then having to go home and sleep for the rest of the afternoon and maybe do one other shop the next day, whereas theres no fun in that particularly.

So yes, I think a wheel chair is a brilliant idea as long as you use it in the way that you’re supposed to, because obviously a physiotherapist will tell you not to spend your whole life in a wheelchair, which is obviously important if you’re in chronic pain, you need to get out and exercise, but if you use it sensibly to combine it to pace your life, so I can go in, do my shopping, go into town and then I can use my walking energy in the evening to like go to the pub or go to the cinema or go and see a friend, so I can use my legs then, then you’ve done twice as much as what you would be able to do in a day.

So I think that’s really sensible, and it works really well, and it means now I can go for long walks outside, my wheelchair will go to between 6-8 miles, much to my boyfriend’s displeasure, so we can go for 6 miles walk which is just fantastic.

How have you found the attitude of the medical professionals to you using the wheelchair and crutches?

The attitude of medical professionals to the mobility aids that I use has been very varied. I originally started using a wheelchair on the recommendation of my GP, this was the same GP that was completely pro-active when it came to alternative therapies. She saw me as a whole person who needed to get on with my life. She knew I was a very determined person and I wasn’t going to spend years in bed, because that was my only other viable option;

And so I think, at the time, it was ‘Start using a wheelchair and get on with your life or not. So, as a human being, as well as a doctor, she urged me to think about it. I think progressing on from that and the different specialists particularly that I’ve seen, they can often as ‘Well if you can walk, why do you use a chair sometimes, I don’t understand’ and that seems a very strange thing because, as a medical professional, surely they can understand that no patient is going to want to use something that makes their life difficult, because being in a chair does make my life difficult but, in another way, it makes it easier if I can carry on;

But I think the attitude that I’ve had to adopt is that my pain is so variable that it’s a coping mechanism and, at the end of the day, most medical professionals do accept everyone has different coping mechanisms.

You mentioned earlier that you’d had problems with a tennis elbow?

Yes, tennis elbow seemed to be I think it was caused by the walking stick. I was using a walking stick quite a lot and I was putting a lot of pressure on my right hand side and I started to get shooting pains in my elbow and so I moved it to the other side the walking stick and I started getting pains in that elbow as well like and I got physiotherapy for that and that seemed to go away and I moved back to my right hand side and it’s just the weight leaning on the arm constantly.

All day, every time I was walking I was mostly using the walking stick when I was outside and that just caused problems as well. And it’s been there for about four months now. That’s a bit annoying, I’m waiting for physiotherapy for that but I mean you can wait six months for physiotherapy, to actually get the treatment and by that time it’s either away or it’s got really worse. So I’m having to try and walk without the walking stick now so I can’t walk as far as I would.

When I went to my GP I said that ‘Did he have any suggestions because when I was using my stick my hands will no longer grip properly. It’s just a regular walking stick but metal, you know, with the ridged handle. And that’s fine if you’ve got a half decent grip but if you don’t.

And he was very dismissive. ‘Well that’s what it is. That’s what we have. And I said ‘Theres got to be something else. This has been in fashion for a hundred years. There must be other people like me. So what I’m saying is that I had to be very pushy almost and he finally said to me ‘Well, make a 20 minute appointment with the nurse and, but I mean, he didn’t volunteer that I had to kind of as I say get a bit, you know what I mean, why didn’t he tell me that in the very beginning. You know when I mentioned it. Why did he say ‘Oh there might be something, get in touch with the nurse because that’s what they deal with. No. It’s just that’s it. That’s what we use. Well, you know.

So anyway I eventually did get in touch with, I was able to make an appointment with the nurse in the surgery and they made enquiries and there is, theres a special, there is a special walking stick just for people like me that cannot grip.

What sort of things did the occupational therapist get for you?

Well the shower was the major item because I couldn’t get in or out of the bath here, there was no grab rails or anything else. I did try but I got stuck twice, and it was really hard getting out of there, and I used to, obviously I had the car then, and I used to go to me sister’s, possibly fortnightly, and have a good bath there because she had, well she had like a shower attachment, and also a big pole that I could use to get, you know, pull me self in and out like, you know, and just to know there was somebody there an all because I was scared of getting stuck.

So that was, that was great when the shower finally was fitted. But the other great thing has been that chair there, mind this has been a godsend, but the chair there its just so, its amazing, my back could be going mad and I just use the chair to sit down and do the washing up, or whatever.

And I don’t know whether its because the way the angle of the seat or just how it is but, me back kind of really seems to ease, and I don’t know, and I just seem to be in that position and its just oh, like heaven, and I keep… that’s what I turn, the position I try to get when I’m out walking, when I like rest against the walls, what I was telling you about, its, I found that that’s where I get a bit of comfort, and I try to replicate, replicate it when I’m out walking and things like that.

Tell me about your set-up…

This is my life-saver. I can’t sit at a desk because the pain builds up too quickly, but when the pressure is off my back the pain is quite bearable, liveable and sometimes almost when you’re highly concentrated, it’s not really noticeable.

As you can see in this situation, I mean all the pressure is off my back. I’m completely supported. So theres no stress in my body to propagate pain. But without this workstation I couldn’t, I couldn’t function. Originally, why it’s rather ratty here is that originally they set it up with the supports they use for burn victims but these turned out to be very uncomfortable and so I took them off and just went back to some, some foam. And as you can see, you know, I sit here and type and I’ve got an Internet connection, email what have you, so I’m in touch with the world.