Fibromyalgia

And the pain, it doesn’t matter, it does not matter, the kids come first, the pain doesn’t come first. And to look at me down there I’m a completely different person.

But by the end of the day, put the lollipop away, I’m dragging my feet because I’ve given it my all, and that’s the same every day, it doesn’t change, every day’s the same there, unless it’s summer time and I’m a bit more nimble.

I learnt over the years to, what I can do and what I can’t do, and I just live with it, get on with it. It doesn’t affect my work, I hope. I don’t think it affects my work, and nobody has said anything to the contrary, so I’m hoping I got away with that [laughs].

What does it mean for you having this job or this work?

Everything, I love it, I love those kids, those kids keep me young, those kids keep me sane [laughs]. I’m outside, I’m virtually my own boss because I’ve nobody else but me out there and the kids, but, yeah, I love it, I do love it.

I took it on as a, a stopgap in between jobs because I’d had, I had major surgery and, I thought, “This’ll do me for six months”, and I’ve been there 40 years [laughs], must be doing something right. So yeah, I do love it, I do love it, I love those bairns, they just make my day.

Just before the pain started to affect me I was working as a patient transport, person and training to be a paramedic at the time, and the pain got too much and stress increased as well, and I think the stress increased the pain. Before long I wasn’t coping at work so I ended up losing my job because my operator, she noticed that I was not coping very well emotionally so she had to let me go, and that was very difficult to hear.

So thinking about another job I knew was pointless, but I was mourning the loss of the job that I left behind because I had some really, really good days there, really good, some of the rescues [laughs] they could you know, I could talk forever about what I enjoyed about that job, it was so rewarding.

So when I think about that job, I think of what I lost and what I could’ve been, and even now I think if I was able to go to work what could I do? Could I, where would I have been if I’d have carried on being able to work with the Ambulance Service?

I work part time, so I have, I have pupils come to the house for music, so I do that, which helps.

It’s hard, it’s very, very hard. I suffer with depression and anxiety as well as everything else that’s wrong with me, and you know, at times I just want to end it all because I’m in so much sodding pain and it’s oh, it’s very annoying and frustrating, and sometimes I just feel I can’t cope. I cancel pupils quite often, which is bad, I know it’s bad but I do, and it’s hard but that does help me doing stuff, even, I’m a bit agoraphobic, so I don’t go out much, I mainly stay in the house, so do you know …

So by people coming in is that a way to keep that social contact?

Yeah.

Yeah, because if you feel not really you know, ready to go out it is that contact …

Yeah, yeah. I couldn’t, I couldn’t go by without the pupils, I really enjoy working with children, so.

So that was the one and only time I saw a specialist, because I did look it up on the internet and decided yes, the only way I could manage it, because by this time it was a year on and I felt really disabled, I hadn’t been able to work or anything. So I changed, because the night pain was so bad I changed the type of work I was doing and I decided to go into catering, so I did that. I still would have problems with lifting anything heavy, my arms would get sore and I would ache all over, sometimes I would have swelling in my hands, and the best cure for that was dipping them into freezing cold water and keeping them there.

I didn’t go back into nursing because I’d done my stint there and the overall effect was it was affecting my body, so I had to give it up, or I felt I had to give it up, nobody said, “You have to give it up”. I was off work for nearly two years when I first had fibromyalgia and then I readjusted my way of life to my way of life, to being able to do something and go out and work.

I don’t know. I do not at all, you know. I mean, there was one day I couldn’t remember my boss’ name. He’d asked me to ask a customer to send him an email which ticks in his name, and I says, “I can’t remember your name,” and he said, “It’s [first name].” I said, “Okay, [first name], I can’t remember your last name either,” you know? That was very, very embarrassing. With work it doesn’t matter to me so much, but the family, we make a joke about it and that, but at work, I think, “Oh god, they’re going to get rid of me because I keep forgetting things.”

Yes, so I had to tell my boss it was, it was quite hard to do, my boss is a lovely lady, but she can be quite scary too [laughs]. So I was quite worried that I was going to lose my job because of it I was aware that my health could deteriorate and from the symptoms getting worse to getting my diagnosis that had already deteriorated and I was quite concerned that I was going to be in a wheelchair by the time I was 30, which was last November. So, I had the discussion with her and she just sort of, she was actually quite good about it, she just asked me what, what whether I could continue to work what, what would work for me basically. and I just continued on as normal for a while and then I asked her to cut me down to part time hours and then recently there she just sent me a random message to say, “How do you feel about going to socials?” I’m a carer.

Sorry, I’m a carer in the community so social care is just basically where I go and I take them out for coffee, or shopping, sit at home, have a chat, do jigsaws, watch TV, and it’s just it involves light housework so it’s, in my previous, not job, previous sort of run I was in a different area and I would have to do personal care, and a lot of housework and up and down, you know, to do the feet and in and out of houses and stuff, whereas now I don’t have to do that.

So – and then I’ve had I’ve had a referral to our university’s – well, my workplace’s occupational health as well, where they did they had an assessment with me and just talked through how I’m coping or managing with my fibromyalgia with work. And they’ve just managed to put some measures in place for me to be able to manage my work if needed, so I’ve got more flexible working hours, I’ve had a new chair given to me as well, for comfort. I’m given… you know, I’m allowed to have additional rest breaks without being questioned [laughs] as to what I’m doing. And things like being allowed to work from home, or if I need to travel for work, the day before I’m allowed to have a rest day. So little changes like that.

Yes, the “Please offer me seat” badge, and like I’d only really wear it when I was really, really bad, and I would be taking off my, off of me when I’m not travelling and like, because I see, I would see customers come in and they’d be wearing the badge and I’d want to ask them like, “How receptive of people for you, and how did you bring yourself to be comfortable wearing it consistently rather than just on the, on transport?” But I thought, “It’s kind of not the time or place to ask them”, but I was kind of desperate to talk to someone that well kind of understand that.

And, so like when I’d go into work and I hadn’t, if I hadn’t taken the badge off yet they’d kind of be like, “Oh, are you going to be good enough to do your job today?” and it was like, I just felt like this, like I was just this waste of energy to them even though I’d purposely fought my way to get in that day, and like I’m feeling fine mentally, I’m just in a lot of pain physically. And like, so they maybe would see it as I’d be taking it off. And then yeah, using like mobility aids just, I’m just too scared to use them, I’m a bit embarrassed and everything like that.

And it yeah, I had to completely re-think my entire career really because the instrument that I’d been studying at college for nearly six years suddenly I couldn’t play anymore and, yeah, I had to completely re-think about what I was going to do and where I was going to be living and it was a massive change to my life, and it still is, [laughs] I’m still figuring out a lot of stuff, you know. In some ways thinking about the future is very scary because I have no idea if this thing is going to get worse, if it’s going to stay the same, if symptoms be, get more manageable you know, it’s just.

Yeah, so, for about as long as I can remember I’ve always thought that I was going to have a career as a orchestral musician you know, it wasn’t ever for me a choice of, “This is what I want to do”, it was a, “I can’t imagine my life without that”, so that was always something that I worked towards, and.

And, yeah, I you know, I kept plugging away at that you know, I think I was lucky, I got into my first choice of, music college that I went to and you know, I got to study in [another city], I had some fantastic opportunities there, I was building up, a network and, they call it a portfolio career where like you do some teaching, you do some playing, you do some weddings and you do lots of different things that encompasses one career.

And I had a sort of you know, not a very specific plan, but I had a kind of, “I’m going to spend a few years teaching, playing, meeting more people, going to auditions and you know, hopefully one day I’ll audition for a world class orchestra and I’ll get in and that’ll be my life, I’ll play with them, I’ll go on tours with them”, and that was something that I really wanted, that was dream job for me.

And then suddenly getting to the point where I can’t even play my instrument for more than a couple of minutes at a time now, I still can’t do that, it’s been over a year now, that’s really tough and you know, I see the case of my instrument and I see all the music that I’d been learning and it, you have to grieve it, it’s a loss and I think people don’t always think about that when they think of grief, they think of you know, somebody that you know has, passed away, and I think that’s you know. I still am, but I had to grieve for the life that I thought I was going to have and I had to realise that that’s no longer an option.

And then in my final year it was my hands and feet that just stopped and I couldn’t bear weight on my feet, and, so I would just be trying to walk because I didn’t, I was too embarrassed to get a stick or anything to help me, and, so I would just be struggling along. And then my hands went and, so I was unable to do my sort of part time job or write my dissertation, I couldn’t write my dissertation so I had to get, extensions on so many things, which meant that I handed in much later than everyone so then people were judgemental of the fact that I had this extra time because I just tried to keep it quiet, to the best.

And I kind of went to the disability people and when, “I don’t have a diagnosed condition but this has happened and I can’t write my dissertation, like my hands aren’t working”, and they said there wasn’t anything they could do because I didn’t have a diagnosed disability, which is a, I understood why but it was just kind of like, “Is there anyone you can kind of advise I go to”, and they’d just be like I’ll just get an extension.

In terms of studying and at university, I have been pretty much fine. I’ve had a few problems in terms of the disability support, but it’s mostly just like individual people not being great at their jobs. Like for example, I had discussed with my, disability advisor being able to park on campus and if it was possible for me to park in disabled bays because the car parks usually fill up really early. And I had gone to her in the middle of July because I knew that it was going to take a while to sort this kind of stuff out, and then she didn’t really do anything about it until like the first week of term.

And, at that point I realised when I’d been allocated where my classrooms were, I realised that one of my classes was on the third floor of a building that has no lift. So I got back to her and I was like, “I’m really sorry, but like these aren’t accessible”, and she just said to me, “Oh, but you didn’t mention having accessible classrooms”, and I was just confused because I had told her that I had mobility issues, and I also have problems with my memory and remembering everything, and that I had asked so much about my like being able to park and that I was waiting to receive my blue badge, and she was just like, “But you didn’t say anything”.

But then my dissertation supervisors, who’s also the disability kind of support officer within the school, of, like the department, he had changed the rooms that were an issue within half an hour of getting the email.

So it’s been mixed. He’s also really great and understanding because he has rheumatoid arthritis, so a lot of the symptoms are shared so he really like understands the condition, and obviously is used to dealing with disabled students. So that has been really helpful, and for the most part people have been good.

I probably just would have been a lot more productive as a person, you know? Because, I lost a big part of my working life and that in itself makes you feel very low, because you’re not contributing to society as well. So just on that point I wanted to say as well, the support group for me, because I got involved so much with it, is actually like a substitute for work. Because and I think that’s probably why I have stayed with them for so long, not only because they’re making progress in the right direction for patients, but also because it’s helping me day to day with my mental health and my social aspect of this condition, and it’s given me a substitute for a working life.