I tried to Google it and read up more on it, and then sometimes I feel like personally is if you go start looking at things and there’s sometimes, I think makes me worse. Well the same as like for example, you get medication, I don’t read the side effects on that because I think you’ll be self-suggestive, you’re going to get side effects. And sometimes well reading on these forums and things, you always get somebody that’s always domineering and it’s, Me, me, me, me, me, m, and I just can’t deal with that, and it’s just, I can’t, like things like that, like groups.

I struggle to get my words out, I, the losing the concentration, just basically forgetting things, the short-term memory, that is becoming more, prominent, that’s the short term memory, it’s the struggling to get words out, it’s trying to get, and I like become stuttery because I just can’t remember what I’m trying to say, that I find very hard.

But I do find that the, what we call the fibro fog, and your, the concentration, your, the short term memory, that I do, I really do struggle with, I really do.

it was the mental thing of forgetting things and people think you know, I’d lose the concentration of conversation and I would stop halfway through and I felt people thought you know, I wasn’t listening to them, that I was quite thick actually trying to get my words out, I wasn’t communicating properly.

And just two years ago she changed the downstairs bathroom into a wet room, and a raised toilet, and I’ve got a raised toilet up the stairs. So all these aids, and then she’s talking about putting, a, forgot my words, and adaption to the toilet, like a bidet thing for me because I’ve got problems with my Crohn’s and that, to help me with that.

So without their support, she’s been a, she’s been the level of support, she’s been fantastic, absolutely fantastic, if it wasn’t for putting these aids in I wouldn’t be manage, I just, my life would be so much worse.

And I’m also in the list for an adapted house. I’ve been on that for many, many years; I don’t think I’m going to get anywhere soon. But with these aids in the house it’s made my conditions more manageable.

So what does it mean for you really as you say you know, having these aids you know, it makes it more manageable, what does it mean, what kind of difference?

Well before the stair lifts went in I couldn’t get to my bed, I really struggled to go up and down the stairs, I wasn’t managing that at all. And showering was very difficult because I couldn’t get in and out the bath, I was really struggling, so now having a shower, that’s a big, big help for that for my personal care.

And like simple things, like I was struggling to get out the chair and this to be able to get me up and out, and she also put in rails at the front door to like help me in and out, put a step out the back for me to get up and down, it was a big step down, I couldn’t manage that.

Yeah, I’m on disability living allowance at the moment, but I’ve just been through the process, I had a home visit a fortnight ago, to go through PIP. That was stressful, I wasn’t sleep, and I still haven’t had a result, I still don’t know if I’m getting my benefit or not because I still, I don’t have the result.

That’s caused a lot of strain, a lot of stress, what I went through that, and I just, that has cause a lot, an awful lot of strain, and that, see situations like, like a stressful thing, that’s got a big impact on the fibromyalgia. Like if some, like if, an anxious time like that, and this has been going on since July when I first got the letter from DWP to say, Your DLA’s coming to an end, you’ve got to go through the PIP proces, and this is now November, still haven’t had a result. All that stress for it, and my mind goes away, What if, what if, what if My rational brain’s saying, They can see you’re ill, they can see your pain you’re i, and I’ve been on mobility since 1992, the irrational brain says, Well what if they take my car off me, I can’t stay her, all that. And that causes a big on, knock on effect, and when your anxiety takes over like that, I mean, it has a big impact on your pain levels, it definitely does.

Before I was diagnosed in 2009/2010, I had these symptoms for many, many years previously, even my children were small, and you got up in the morning and it was struggling to get them dressed, never mind getting yourself dressed, and getting them to school.

It had a big impact on you know, their childhood, because their mum would be in pain and struggling and I’d be irritable, sometimes oh, you know, and you know, a short fuse because there’s so much pain and you’re not
Again, as well to play with them, to take them out places, that was a big impact, because you’re not, you’re just not, there’s so much pain and feeling you know rubbish basically, just you’re struggling to do things for yourself, to entertain them, to take them, it was a big chore to be able to take them places.

And as I say, with my kids it was, I felt sometimes that you know, wasn’t missed out but it was an effort, it took an awful lot of effort to be able to get out the door, to get them ready for school because you were so struggling, now I’m getting them ready. And then to go to school meetings or anything like that, and then I’d be forgetting things and again, trying to get my words out in these places, and it was very, I found that very, very hard because the kids, they were quite small when all these symptoms started.

And since then, well I had the symptoms well before that but, now it was nice to put a name to it because when I first started getting pains, I know osteoporosis is a, like a, it’s like a pain free condition, I just assumed, Oh, it must be something to do with the osteoporosi, not realising you know, there’s other things going on. But it did take, many years back and forward, back and forward to rheumatology before I actually got the diagnosis of the fibromyalgia, and it was nice to put a name to what my symptoms were, because I actually began to think I was imagining it, began to think you know, describe this you know, and you’ve got all things in your head thinking, Is it this, is it that? Is it bone cancer all the pains and then to get that diagnosis confirmed, it did help.

Yeah, okay, it’s just, it’s hard to describe it really, it is hard to describe because you live with it every day, you do live with this condition every day, and. But it was a relief to get the diagnosis knowing it wasn’t something sinister, because things do go in your head thinking, Is it bone cancer, is it you know, is it something like that but it was nice to get a diagnosis to know you know, that it was something manageable.

Yeah, I kept telling them about this pain, and obviously the osteoporosis is a silent condition, but I, being a lay person not knowing medically, I thought, Well it must be, my pain in my joints in my knees and my elbows must be coming fro, and he went, No, osteoporosis won’t cause tha, and that’s when he started to looking into other things. And he did like, he’d lift my knees up and do like, move my joints and things like that, and the more I was describing where the pain was situated, where I was getting the most pain, and because it was, I had, the points in my, like my neck, my shoulders, down, right down to my toes, and of course I had all the different points, and they ruled everything else out and then real, and that’s when I was diagnosed with fibromyalgia because they rule everything else out first before they you know, and that’s what they, diagnosed me with.

But it’s because I was, whatever points, you have so many points in your body before they diagnose you with the fibromyalgia, but it did take, it did take a while for that diagnosis.

So, is it correct then that a rheumatologist diagnosed
Yes, yes.

Do you remember what the rheumatologist you know, told you, you know, so you were in that appointment, you got the diagnosis, how did that work?

Basically said to me, Nothing to do with your osteoporosis, this is your diagnosi, and handed me a booklet with fibromyalgia and he said, This is what it i, and explained that it’s an all over pain condition, it’s a debilitating pain condition and because there’s certain points in your body, that’s how we can diagnose you with thi, and explained all the other symptoms like the chronic fatigue, you do get the, like, see what I’m saying, forget you know, the words of fibro fog as you call it and the concentration, and obviously pain is debilitating. And I got a wee booklet explaining things about it and that was, that was his, that was it.

So how did you feel about then getting this diagnosis?

I felt relieved to know it event, there’s a name to it, because people can’t see pain or describing this pain and I’m not a person that moans and groans about it, I just get on with it. But it’s hard to describe pain, it really is hard to describe pain, and you’re saying, I started imagining in you know, Is, is it in my head all this coming from my shoulders down to my toes, to describe that, Oh, what’s she moaning about because you can’t sort of have pain every certain bit of your body but you do.

So it’s a relief to understand that, to get that diagnosis it was like, putting a label on it, to understand it and knowing that you had this condition and it wasn’t in my mind, it wasn’t that I was imagining it.

No, basically I just went twice and she’s just give me a sheet with exercises to do, showed me exercises to do and away out the door.

So how, how do you feel about this kind of approach?

Maybe it’s just personality but I don’t know, I don’t actually feel comfortable going, I don’t feel, I don’t feel there’s, well talking about this rapport things, she’s not a very, person you can really build up a, that kind of person that, and that does affect how you feel and how you’re, so. It might be me that’ll quit it before she’ll quit me [laughs] to be honest [laughs].

I’ve always, so I’ve suffered from depression on and off for 20 odd years and I’ve got a lot of anxiety and I go to see a psychiatrist approx every six to eight weeks I go and see, I go and see him, and that’s when I can really let him know how things are, and he also sees my sons as well with their autism.

And again, I’ve built up a really good relationship with him, and I do think, I know I’ve said this before in this, I do think it’s very important if you’ve got long term health conditions you are building that, the doctor you are seeing, the professional you’re seeing, that you’re not just a number, you’re not just a patient, you’re a person to them, and that relationship has got to be in trust and built up on both parts, and that means, that means a lot to me.

So as I say, I built up a relationship with the psychiatrist, and obviously you can tell a psychiatrist anything, but they’re, he listens and maybe tweak the medications and things like that, so I do get quite a benefit from that.