How do your friends react to your pain?

Well they’re fine and I can you know, I just put my feet up on the settee or whatever and you know they’re fine and if they can do anything for me they would. I guess in some ways I’m, I just, I’m too independent really because I don’t like asking people to do anything if I can help it, if I can do it myself.

I guess sometimes I have unnecessary pain because I haven’t asked someone to help. But I know they would if I asked but you know the great relief when I go to friends is that you know they know that I’ve got the pain and if I have to get up and walk around, that’s fine or if I put my feet up on the settee that’s fine. So you know it’s much more relaxing.

I have been to a couple of meetings that I particularly wanted to go to, you know and sitting on hard chairs I find it very difficult and I had to stand up and then you find that the whole room seems to look at you wondering why you are standing and it’s, I find it very embarrassing.

I was wondering actually about your housework and things that you have to do..?

Yes
How do you go about doing them?

Well I use a stool, if I’ve got to get up to higher things now I use a stool but it is still quite painful to do things like windows, paint work and things and I guess I’m just leaving them at the moment I can’t remember when I last cleaned my windows.

Hoovering I do, but sometimes it’s quite painful it can you know, really catch. Dusting is okay I just dust levels that are, you know, eye level, my hands will go to, I don’t dust up higher than I can’t reach or if I do I stand on a stool.

Putting out the washing can be painful, although I try and bring the line down so that it’s at a better height. Ironing is, I can’t do much ironing because you know the pressure is uncomfortable. Things like cleaning the bath, you more or less have to rub it round while you’re in there.

Yes. I think it’s mainly because people, professionals, you know, if they look after a certain part of your anatomy, say your shoulders or they just tend to think of that as the problem with you, they don’t tend to look at you as a whole person. And I always try to explain even earlier this week to a professional about the pain and they said that they weren’t interested in that part of it.

They were only interested in the bit that they were interested in as though I was, you know, I could be chopped up as this is, you know, as though all parts of your body weren’t related. And I think that that’s where the professionals have got to look at people as people not as just a heart, or a shoulder, or a knee but as people with lots of different needs not just the one. So it just blinds them to the fact.

You know I often wonder if they just see a picture of your problem in front of them, you know not me as a whole person but say perhaps you know the shoulder person just sees a shoulder sitting in front of them or the knee person just sees a knee person sitting in front of them, you know and the same from the other side, the mental side, they tend to look on you know just the mental side and not the physical side. Which can sometimes be quite distressing because you are a whole person.

You said earlier that you wanted some more information about what the shoulder operation would involve?

Yes.
Can you tell me how you’ve tried to get the information?

I’ve put a couple of messages on different websites. I can’t remember which ones, for anyone who’s had one because it would be nice to get you know a kind of first hand opinion of what it’s really like and especially as I live on my own it’s quite worrying because I don’t know quite what I will be able to do and what I won’t be able to do.

I’ve asked around different friends, you know if they know of anyone but no one. It seems as though it’s never happened to anyone before. Although I know they’ve been doing shoulder replacements for a long time.
Has the surgeon talked to you about the success rate of your operation?

Not really no. Again you know perhaps I have not asked the right questions. Last time I was more ready to ask the questions and he was obviously very short of time. But no, I think really we could do with when you are going to have an operation you know and you are on the waiting list or even before you are on the waiting list there ought to be some leaflets to give you some idea what is going to happen to you, that, that you didn’t ought to have to ask for.

I’m not very good at asking, asking for things I think and also you know when you are in the, I guess I was brought up in an age when doctors were just nearly God and you didn’t ask these questions and’ I’m a bit better now but I’m still finding, I still find it quite hard when I’m in their presence I suppose. But I think as a matter form there ought to be leaflets about these conditions that were given especially when you were on the waiting list.

I was wondering if you had any messages for other people that are experiencing pain from arthritis?

I guess, theres only one thing and I can’t do and that’s accept it. That, I can’t do myself. I mean, I guess I kick and fight but it doesn’t do me any good, it just makes matters worse in the long run. Don’t feel guilty for things you can’t do. Again I’m not talking from experience because I do feel very guilty when I can’t do things. But I guess if I could accept and if I could not feel guilty because theres some things I can’t do then I guess that would make life easier for me but I can’t. I can’t do either of those myself.

Again it’s acceptance, isn’t it and I’m not good at that, I suppose. I feel you know, theres got to be an answer and that I’ve got to find it. Yes, I guess all of those things stop me from accepting I suppose. You see to go back to my sister-in-law with MS, she has accepted her MS, shes accepted and she is very disabled with it but shes accepted her limitations and I can’t seem to.