Could you tell me a bit about what happened on the Expert Patient Programme?

Okay, on the Expert Patient Program there were invites sent out to a variety of people with chronic illnesses, and they were invited to a day seminar just to tell them what the Expert Patient Program was all about and I was at the pain clinic when the sister had said, ‘Have you heard about the Expert Patient Programme?’ and I said, ‘No’, and she said, ‘Well theres a phone number that you can try.

And I was invited along to the start, I’d actually missed the interview, the one day seminar but I got invited to go onto the course itself, which I did do, and then while I was on the course, each day you were set certain challenges and tasks to do, and part of that was about management, the management here and now in the present time and in the near future, any changes that you were having problems with would be debated around the table and hopefully that out of all the answers something would click for you, and you’d think, ‘Oh yeah that might work for me. So you got some insight of different, other peoples thinking on how to deal with things on your own.

There was also breathing and relaxation and the benefits of breathing and relaxation, managing depression and goal setting and managing your own lifestyle. Communication and your rights and how do you feel about communicating with certain different people and that, and how do you improve your communication skills.

I think that’s the most important is, you know, is talking about it, get somebody that you can talk to, but unfortunately sometimes, like in my case, where I started feeling now I’m isolated, and okay I mean I still use a phone and I still phone various people, but it would be nice to have say somebody on a, say an hourly basis, once a week or something like that where you can, where you tell them how, how bad you do feel like, you know, and I honestly think, it might save lives, because I mean the pain does…

I know part of the fibromyalgia syndrome is depression apparently, you know, I’m saying from what I’ve read and that, but whatever, but if its the pain an all, and its causing depression, is having somebody there like to relieve that, the valve could save a lot of peoples lives I would think, you know, because there is…

I mean I know how close I’ve come myself, I could have quite easily just come in and took the tablets and says, ‘Right to hell with it’, you know, and I’m still here, I’m still fighting on, and I would say for anybody who gets to them deep depths of despair, pick the phone up, talk to somebody, try to find out if theres a group, I mean…

Samaritans are there all the time, they’re fantastic, speak to them, you know. I’ve used them, you know, and I think that’s the only way you’re going to get through because if you try to handle it, I mean, which I’ve tried a lot, tried to handle it on my own, you know, well I’ll get better, you know, all these certificates, you know, I know how to deal with it, I can cure it, you know, but…

And I think everybody, you know, it doesn’t matter how good you are and sometimes, you know, doctors, nurses, you know these things, but when it actually happens to yourself, it’s when you need somebody. If you’ve been doing it for everybody else all the time and you tend to forget that, and I think that sometimes everybody needs somebody else just to be able to look at it in a different light, in a different way. I think they’re the most important things I could say, tell anybody.

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.