Listen. Just listen and engage with the person. And let them know that they are heard, and let them know that you have listened, and let them know that you will work with them, and it’s not a case ofyou know, your head’s down on a piece of paper or your head’s in the computer, you know, make that personal contact with them and you know, and listen.

don’t let fibromyalgia define you. You know? Accept it, but most importantly, if and when you can, keep your mobility. it’s important that you keep your mobility. If you keep your mobility, you’ll keep your independence. Now, no matter whether you have to use crutches or sticks or whatever, it’s important that you keep your mobility.

In some ways, I suppose it’s maybe like telling your, you have a life-limiting disease because you have all these imaginary ideas which actually do, in effect, come through that you don’tyou find it hard to do the things that you used to do, you find it hard to interact with people, you find it hard to make any longstanding arrangements, you find it hard even to go on such a silly thing as a holiday due to the nature of moving or non-moving, really, I should say, whether it be on a train or a plane or in a car.

And then you find yourself that you cannot do the things that you once enjoyed even though I was still attending the doctor way back in the early days with my ankle trouble, I still managed to play soccer. But once the fibromyalgia was diagnosed, then I actually found there was days well, quite literally days, three, four days, five days, that you really couldn’t do anything, you know? You were very limited to even come downstairs to the living room. Food was always a problem, in respect of sometimes you didn’t feel like you wanted to eat and then you would eat maybe at the wrong times or night because that was when you maybe felt a little bit better, you felt hungry and you could eat then, soand due to the fact that I have put on weight due to fibromyalgia, I was never this size, which also makes you quite depressed and you become self-conscious, even though I’m a man, you know, middle-aged. But you know, when you know from what you were to what you are, is quite a discouraging situation.

it’s just, it just overwhelms your mind, there’s not a part of your life it doesn’t affect, from your interaction with people to your to your relationship with your partner, you know? It has an effect on that capacity, even within the relationship of a man and a wife because of the pain.

And so it impacts in the very personal parts of your own life, you know, and that presents a whole load of other problems and you’re left with the view of the partner feeling unloved or unwanted or, or not attractive, and so you’re then having to explain the situation, why that is for you, it’s not because that you’re no longer a man and she’s no longer a woman, it’s [laughs] this damn thing called fibromyalgia [laughs] that [smiles], you know, I can understand why people turn to alternative drugs. I don’t, I just stick to what I’m given legally, but I can understand why people do. I can understand why people, no doubt, have maybe taken their lives because of this pain.

So I’ve been on various types of medication and I’ve had various types of what do you callalternative therapy, which in their own way have been good and quite helpful. You know? Mindfulness and all that sort of thing, and I’ve attended a six-week pain course which was pretty well interrupted by not just myself but those participating who had to go up and move around due to the pain that we found ourselves in for the long periods of being in a sitting position.

Well, the symptoms, if you know, are very restrictive. I can never find a comfortable position in bed at night, I never seem to find a comfortable position in a chair. The symptoms that I feel are, are just un-describable pain. When you take tablets, you have terrible pains in the neck, in the head, in the hands, the fingers, the knees. Even something as silly as wearing a shoe that has laces, sometimes you can’t even tie with it, because there is no strength in the joints and when you do it, it’s just like, it’s like an electric shock goes through the point of contact. An electric shock can go through when trying to manoeuvre in any situation.

I don’t think people really realise, as bad as the physical pain is, it’s the mental pain as well. it’s the lowness of mind, the lack of able to do what you used to do or able to do, it absolutely invades every aspect of your relationships, from your grandchildren, from your wife, from shopping, from driving a car, you know? You can’t hold a steering wheel, you know, you can’t turn your arms, you can’t raise your arms up to scratch the back of your neck because the pain you feel in your shoulders, you know? And you don’t like always talking about it because I don’t want to be defined by fibromyalgia, I want to be defined by who I am as a person, not what I have as an illness.

And soand another thing that fibromyalgia does, it makes you very forgetful, it gives you fog in the brain. I don’t know whether anyone’s ever touched on this but you, you become very forgetful. Not meaningly, and sometimes you think, is this the onset of dementia or am I? You know? Is this, you know, something else kicking in because ofyou know, what’s going on with the brain, having to, you know, send all thesefire all these things at your nerve ends, you know? So you do get very, very forgetful and sometimes that’s a, a worry. I often mention it to my consultant and they say that this is normal, that because of the pain that you’ve got, you’re, you know, you justyour concentration levels are not the same, you know? You, you know. Soshe pointed this out by saying, Well, you don’t sit through a film, do you I went, No She goes, Because of your concentration, because that has an effect on your capacity to, to retain information And so I think that’s an important thing, that if anyone’s ever dealing with somebody with fibromyalgia, to bear that in mind. If they’ve not done what they’ve asked you to do, it’s not maybe because they don’t want to, there’s possibly two reasons. One, that they physically couldn’t do it, and the other one is that they’ve forgotten all about it just due to the kind of fog that you get in your brain with it, you know.

And so it’s just constantly there, and you know, the medical profession are great, I’m very fortunate that I do have a doctor who knows and understands and is very empathetic to fibromyalgia. So that case, I feel quite blessed. And when I have my appointments with him, you know, it’s very much that they take onboard what you say. There is contact with, with me, they make eye contact with me, they make a point ofyou know, even though they’re putting things down on a computer that they, they interact with me, they let me know that they are listening.

Well, I have support from my GP you know, when I, I need any sort of items or additional items you know, I get telephone consultations. it’s not always easy to get an appointment with a GP, so they’re quite good at calling you and speaking to you and so they’re very much aware of what, obviously what I’ve got. So the other people I see are also the mental health group, you know, they’re very good I’ve been fortunate to be tied up with someone who has had experience in dealing with pain so I’ve been kind of fortunate that I have seemed to have landed in the, the right places. And most importantly but not least, is theis the, the consultant that I see at the hospital every sort of [pause 4 secs] two months, it now is.

At the moment, I’m on all sorts of medication both for my mental health and for my pain for my body’s health, you know, in respect of what I take. I feel I take a tablet to do this and a tablet to do that, tablet to rise [smiles] and a tablet to sleep [smiles], a tablet to eat [smiles] and a tablet to stop eating [smiles], you know? So I just feel that lost, you know? I feel pretty hopeless that things won’t get better on a dark day. But I’ve got to accept that it is what it is, and make best of what I’ve got. And most importantly, I know in my own mind that if I don’t move then I’ll lose my mobility and that, in turn, will cause a lot more problems for me.

Well, when I was diagnosed as I said, it was maybe around about 2005, approximately. It could be earlier or later, as I said, I’m not very great with dates. It was with the rheumatology clinic at the hospital I attend and they said that the consultant, in her opinion, she believed that I had fibromyalgia. And I asked her to explain what that is and shethe only way that she explained it to me was that, that if you peel back the wires on a, like an electrical piece of equipment, the wires are bare. And so round about your nerve ends, there is a covering of material that’s meant to protect these nerve ends from inflammation so fibromyalgia is basically the wires being exposed, and so when that’s exposed, then it feels the pain becomes more intense and more unbearable and very restrictive in what you do. So when I was told that, she gave me information on it, you know, she never left me just with those words, she gave me sort of various, various pamphlets and stuff that she had downloaded from the internet.