Well to be honest with you, I don’t gather information about fibromyalgia because sometimes knowing too much about something can be a bad thing. When I was diagnosed I decided on a certain plan of action that has suited my lifestyle and I’ve continued with that. So I don’t constantly research it or look it up because I don’t see the need, there’s not been any miracle cure. Occasionally I would read an article about it, but it has not necessarily improved my situation so I disregard it. What works for me is what I do and there’s not been any major changes in what they do for fibromyalgia, so.

No, you have periods in a year, I would say in a year I would have three periods where it’s severe and the rest of the time it’s manageable. If you go out your comfort zone and do things, like I wouldn’t go to a full on exercise class because that would trigger it all off again. So it’s within yourself to actually manage your symptoms by not doing things, not doing nothing but just certain things you know, don’t lift heavy paint pots, don’t paint the ceiling because these things trigger off a bad bout where you’re incapacitated for two or three weeks at a time.

So would you say that you know, like having these around three bad bouts per year it’s because you did something which went a bit overhead, or is it something that
Nine times out of ten, yes.

And how do you, how do you know it’s going to happen you know, worsen your symptoms?

Because the pain just kicks in, the pain you know, something simple. Like most days on a good day you can do your normal things in the house like hoovering, make the beds. I myself find lifting anything, like I can’t now lift a heavy pot, I haven’t been able to for quite a number of years, lifting my grandchildren is a problem, and I feel when I do that, these are things you do normally, but when I do that I then have to, I know the next day my arms and my hands will be painful, and sometimes they get, they get swollen .

So that, so there are some things you do and you do automatically, that trigger it off and you know afterwards and you say, Right, well next week I won’t do tha, but that doesn’t always happen.

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 u. 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.

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 wa, 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 ch, and I did but I kept falling over because I couldn’t maintain my balance no matter how hard I tried.

I saw my GP and he thought it was a result of the accident I had been in and the fall, a combination, but as months went on and it didn’t clear up, and I’d been put on painkillers and anti-inflammatories I was told, Right, we’ll start physiotherapy, that might hel. So I started physiotherapy for three months, which was extremely painful because what they were doing they were putting me, putting weights on me to stretch my spine, which was fine on the day, but by the next day I couldn’t move.

So what happened afterwards, did
Absolutely nothing at all [laughs]. As I say, I tried physiotherapy, I go to a local class if I want to do the exercises for the elderly, which I can do just the same in the house, so I don’t see the need to persist in going to pain clinic that’s not actually offering what I need, I feel I need. it’s as if We’re not listening, that’s our course of action and if you’re not happy you don’t need to com.

No, you have periods in a year, I would say in a year I would have three periods where it’s severe and the rest of the time it’s manageable. If you go out your comfort zone and do things, like I wouldn’t go to a full on exercise class because that would trigger it all off again. So it’s within yourself to actually manage your symptoms by not doing things, not doing nothing but just certain things you know, don’t lift heavy paint pots, don’t paint the ceiling because these things trigger off a bad bout where you’re incapacitated for two or three weeks at a time.

At one point I was in the car accident and I was given acupuncture for six weeks and it was wonderful, I didn’t have a trace of fibromyalgia for three months, and I put it down to the fact that I’d had the acupuncture.

Unfortunately, we don’t get acupuncture in the National Health Service except maybe one or two sessions when you go through a pain management clinic, and that’s only if they feel it will help your condition not if you say it helps, so unless you can afford to go privately, but it does help when you get it and I’ve done that a couple of times when it’s been really bad.

They give you one shot, one shot is not enough, and I think things like that is very frustrating, because it’s very expensive, and I’ve had it twice and I felt it took, it alleviated all the symptoms, I had never slept better in getting it, but it’s something I can’t afford.

How does it make you feel if you know, there is something which does actually work for you but it’s not available, via the public health system?

Well I think it’s very annoying because you think Well if that work, if they looked at the bigger picture. Using natural remedies doesn’t help everybody, but it can help for short periods of time. If they used them and found how beneficial they were the bigger picture would be people wouldn’t have to take so much time off work, they wouldn’t necessarily be on long term sick if they tried alternative remedies that actually work, and that’s only from personal experience.

As soon as I saw the specialist he told me I had a fibromyalgia from the way I was walking and moving and said that fibromyalgia was something that was caused perhaps by my 30 years of nursing and lifting wrongly. I reiterated that I felt that I’d never been off work except once with a bad back, but at least somebody had given me a diagnosis. He again recommended to stop the physio I was getting because it was obviously making me worse, but to keep myself mobile and to take anti-inflammatories and painkillers as necessary and to look it up and try and manage the condition myself as opposed to somebody else telling me what I should be doing.

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.

So in essence I managed my condition.

Right. Well in 2000 I was in a car accident, just a small one where there was two, two emergencies stops, I also had a fall on that same day. At that point I was nursing, I went into work, it was nightshift, and my neck was extremely painful, so much so that I had to go home and I have never nursed since because by the following day it got worse and it affected my neck, my shoulders and my arms.

Oh aye, it was aye, it was positive because I’d been waiting six months and going through all this other stuff you know, and the GP at the time was saying, Well that wee accident you ha and it happened like three times in the one day That’s the cause of i, and I thought, That’s not the cause of i, I mean I’ve had whiplash before.

But as I say this, it was very debilitating you know, and even you know, getting out a chair it was, because you had to use your arms to get out the chair and your neck was sore and your arms and your hands and this you know, like it’s swollen today, this would all be swollen and my arms would be swollen. And this went on for six months and I’m saying, Oh, it’s just caused by a wee emergency stop in a ca, no.