Fibromyalgia

Another thing about not being able to work, you lose that social contact with your workmates, and you did sort of keep in contact with them to begin with, but then you lost because there’s days that you’re not able to meet up. And that’s another thing about friends, can, you can lose friends through not being able to do things, and you’re not able to go out and do things like going to see say just ordinary things like out for drinks or to see bands or the cinema, or. Then you kind of feel like they stop asking you, so “Well he’s not going to go”.

Yeah, that’s impacted, yeah, that impacts your life, not being able to do hobbies, so I did do photography, astronomy, but I haven’t really been able to do much photography lately. I did do a course at the college for photography, that’s when it was film, cameras, black and white, but I did do it, but it was, made my fibromyalgia worse, but it was good to go out and you felt part of something.

And I think most of my really good friends kind of understand that now, that it’s not just I’ve opted out you know, I was the kind of leader of the gang, I was the one who organised the girls nights out, “Let’s go away for the weekend, let’s do this”, and over the years your life just becomes smaller and smaller and smaller.

Because everything in life is balanced Stefanie everything in life, every action has a reaction. So maybe I focus too much on what I can’t do, the things that I’ve had to give up, the lifestyle changes that I’ve had to make, because that is now normal for me.

Nobody’s ever shown an interest in, “Well what can you do, and what are your strengths?” and. That part of my life now has gone because nobody showed an interest in it for so long, and I’m the biggest contributor to that.

But I feel as though I’m not getting anywhere, it’s very depressing, it leaves me a lot of the time in tears. I find I can’t do the things that I want to do that I used to do, the sweating, the tiredness, the, sometimes the brain fogs, they are debilitating and I really don’t know what to do about it. I just wish it would go away.

I’ve got this, my granddaughter’s wedding on Saturday and I, honestly I’m dreading it because I’m either going to be standing too long or sitting too long. And if anybody asks me to dance I’ll die [laughs] because I can’t do it anymore.

So I mean it’s all these little things that gang up on you when you’ve got fibro and kick you in the teeth, that just can’t do these things anymore.

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’t… you 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, so… and 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.

But like a lot of specialists I find are so focused on the body and their research interests they forget that they’re dealing with people, and they kind of just treat you as, “You are patient number three”, and they deal with your body but they don’t deal with the fact that like for a lot of people it’s probably like a very emotional process, and like it definitely was for me, to get a diagnosis finally or to not be given a diagnosis but also just be told, “We don’t know what’s wrong with you, go away and see someone else”, and there’s not that like emotional support there.

And like for me once I first went to my doctor and I realised that it was likely that I had fibromyalgia, I was really depressed for a while because I finally managed to kind of, rationalise it in the sense that I was going through a process of mourning for my old self, and that like I realistically will never be able to play competitive sports again, and I probably won’t ever be able to have my own children because I don’t think that I would survive pregnancy. And just so many different things, that I most likely will never work a full time job because I need to have a nap.

Yes, you learn over the years to adjust yourself to it, you would have to, there’s no point getting morose about it, you can get, still get frustrated, you’ll always be frustrated about it, because time is precious and I don’t like wasting it .You know, but I can go and walk for two/three hours, not a problem, but it’s at my pace you know, and sometimes I’ll walk to the shop and family will say, “What kept you?” I said, somebody, a famous singer said, “I’m doing it my way”, because I’m comfortable with that. It takes me twice as long to do these things, but there are things I can still do and that’s walk and get a newspaper from the shop, just not quickly.

So it’s about finding out what works for your in a way, or?  What would you say?

Yeah, you have to do things that suit you not that suit other people. And if you find in doing something it, not, no, no two people are the same .I’ve gone to some, and I don’t regard myself at 66 as a geriatric, and I have gone to some of the classes, exercise classes. I remember somebody said to me, “Go and try tai chi”, and I did but I kept falling over because I couldn’t maintain my balance no matter how hard I tried.

And it’s fine now, like I have rationalised it and dealt with it, but it would’ve been really helpful to have some more support from somebody that was like, “It’s okay to do this”. And I actually only, like I was just, I had all of this, these emotions built up inside and I didn’t know what to make of it.

And I think it was actually somebody that had posted on reddit in the fibromyalgia group that had like written a poem about it, and I was just like, “Oh, that’s what this is, like that’s what I’m feeling”, I just didn’t know what it was.

Yeah. So it took me a long time. I had taken, at that point I had dropped out of university so I had nothing to do for that whole year. I initially started going through the process of like applying for universal credit so that I could deal with the fact that like I had no income.

So I was kind of, it kind of put my own issues in perspective a little bit because I was like, “I’m still alive, like I can still do this, I just need to deal with it”. But no, I read a lot of books about pain, I completely changed my view of life; it took a long time, because I, previously I was planning to finish uni and I was looking to get an internship, I was looking to go into management consulting and potentially move to London, which is a really, like it’s a high stress career and it’s really challenging, which like I like would have loved it, and I’ve done similar work which I really enjoyed, but it’s not a reality anymore.

So I just changed my perspectives and kind of had to really question myself, like what I value. And thankfully I have my wife, I honestly don’t know what I would’ve done if I weren’t with her because that was at least one constant, and my dog. Actually my dog was probably the best thing to have because even on like my worst days when I couldn’t get out of bed, she would just lie next to me. And then on my better days I could take her for a walk and she would be equally as happy, which was definitely something that like got me through. I think everybody should have a dog, or at least one.

You just have to get on with it, you, what I do now is I don’t try and do everything that I would’ve done in the past, I break it down into, “Well today I can do that” or “I can attempt to do that”, and if I can’t do it I’ll leave it, [voice tearful] I’m not going to stress about it whereas before I would get really upset with myself.

Now I tend to listen more to my body, when it starts to protest and I’ll just leave whatever it is, and it could be something simple like cleaning my kitchen floor, I just can’t do it you know, my arm’s so sore, my back’s so sore. Just to coordinate, to make decisions, easy things, things that other people don’t think of you know, they just do it. When you’ve got fibromyalgia it’s like every day is climbing a mountain. That’s the only way I can describe it.

I sit here all day most of the time. I try and do a little bit of console gaming, that takes my mind off the pain and, it makes me feel like I can do something that I can’t do in real life, like I can run around, I can fight, I can jump, I can fly, I can do whatever I want, I’m nothing, I’m invincible. And, so it’s nice to switch off from reality for that little while, and I can spend a lot of time doing it because it’s so therapeutical for me, but it’s so annoying for my partner so obviously I have to balance it out.

So to make things a little bit normal for her I like to do some colouring, she just sees it’s just colouring [laughs] like a little kid, but, for me it’s just a way of focusing my mind on something else.

If I’m not doing, I’ve, like I’ve always got to be doing something, if I’m not doing one thing I’ve got to do another thing, and I think that’s the main thing about it, because if I’m given too much time to dwell on it I start feeling sorry for myself, that’s, that can’t happen, it just can’t.