Fibromyalgia

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.

I’m trying to think where I heard about the weighted blanket. I don’t think it was on a forum; I think it was something about… I think it might have been my friend [who had moved back home] that sent me a link to it because she suffers from really bad anxiety and I know she sent me a link to say, ‘Oh, have you heard about these weighted blankets? I wonder what they’re like,’ and I think from there on in, I kind of looked into it and the fact that it says, you know, that having the weight on you, is first of all, it’s soothing but then it’s also helpful for you know, helping with muscle pressures.

And I thought, well, you know what, if I’ve got the weight on my legs to stop me kicking out at night, it’s not …you know it can’t be that bad. They are really expensive for what they are, so I spent a lot of time looking around online to see where I could find the cheapest one, and that was from an autism website. So it was, I think they’ve done some research in terms of autistic children to find that it can help them. But I mean, I’m hoping, I’ve had it for nearly a year now, I’ve had it, and it’s still in pretty good, pretty good nick. I don’t use it all the time, but there are some evenings where I just think, ‘You know what, I need that weight on me just to kind of try and help me relax,’ it’s been really good.

So the doctor that I went to I asked you know, “Can I have an OT come to my house and see what help I need because I’ve been told by a lot of different people that I’m entitled to this?” None of them professionals, just regular Joe’s, friends, people that I know who have said, “You do know that you’re entitled to have an OT come and assess your house?” and I thought, “Well my house is already adapted but I am having trouble getting out of bed”. I had to buy a new bed because mine was too low, so I had to spend money and buy myself a new bed not knowing that I could’ve got bed rails to help me get out of bed.

So the, the doctor then did refer me to the OT who came out and done the assessment and they were actually very good.

So when you say they were really good, what made them good?

Well when they came out they asked me what I felt I needed rather than looking around and saying, “You don’t need anything”, they asked me what I felt and then they either agreed or disagreed and explained why. Then I asked them, “Do you need to look around the house?” and they said, “No”. They asked me, “What do you feel you need?” and I explained, “I find it hard to do the dishes”, and they said, “We”, she said, “We can supply a perching stool, would that be something you’d be interested in?” and I said, “Yes”, and she asked, “What else do you have trouble with?” and I said, “Well getting in and out of bed”, and she said, “Well we can supply a bed rail”, and at that point she said, “Can I see your bed?” just so that she could get the size of the bed rail right and I said, “Absolutely”, straight in there and she had a look, “Okay, we can supply that”.

And then the bath, the shower seat was actually given to me by my mum, so it’s a metal, it’s metal and I explained to the OT, “It’s metal, it’s cold to sit on, it’s hard”, and she said, “Well the one that you have is the one that we would supply”, and then she gave me advice, “Put a towel on it or buy a bath mat and put that on it to make it softer to sit on”, you know, they, they gave me advice instead of just saying, “You already have one, you don’t need it, you don’t need one, that’s what we would give you”, she gave me advice as to how to cope with the one that I have, which has actually made a difference.

So what kind of difference did that make to you, you know, to have someone looking at it and not just say, “Oh, yeah, that’s, you have a chair”, but actually pointing out different things, which would help you cope with these kind of things?

For me it felt like this person cared about my way of life, about my comfort, my level of comfort, how to make it better you know, they didn’t just brush me off or brush me aside and say, “Well you have a chair, what more do you want?” and I would never have thought about putting a towel or something on it, and I thought, “Well a towel’s going to get wet and it’s going to get cold so maybe I’ll go with the bath mat”, and I done that.

So feeling that these people actually cared about even though I’m young and I look physically fine, there is something wrong with me and I need help and they were willing to give it, regardless of what I looked like on the outside they recognised that I need help.

I got initially, I got a perching stool. She gave me some steps, a bit like a giant version of a stand that you put a computer monitor on, you know where there’s things for players. Because I had a shower that had a step in it. She gave me some advice on stairs, and having an extra handrail, and she gave me some of those things that I absolutely hate but are quite useful, that go on toilets to make the toilet a bit higher. Now, one of the big benefits I got from the financial assistance through the PIP was, and again, was help from my sister with, you know, with OT, on one of her visits we went to… there’s a Disability Living Centre in [the city] and we went there and got some advice on bath lifters and all sorts of different things. And then we went to a local firm that does kitchens and bathrooms, a firm that I know, one of their specialisms is disability bathrooms.

So I had all of the bathrooms refitted, including the downstairs toilet, with a toilet that… well, I think the rather interesting language they used in the showroom was “comfort height”. I mean, it’s higher than the old toilet was, even with this screw-on attachment, but it doesn’t look like, you know… and they don’t look very hygienic either, those things that screw on to the toilet. So, functionally it’s better, it’s higher, it’s clean and contemporary-looking, you know? And you know, the money I got through the Personal Independence Payment helped pay for all of that. And I had some modifications done to the staircase as well, with extra handrails.

The council one is [points to side] the one that can get you every, the things yeah, that’s them definitely. So they are the medical ones in [the nearby town], and the council ones, I think I got a number from somebody to phone basically. I did, [nods head] and they were quick off the mark, really good, because I got that, I got that, raised toilet and wet room six weeks from, from enquiring about it approximately. What a difference that made, I used, had to come out the bath, [gestures with hand] roll on to the floor and every time I did, my back was going, “Oh, oh, oh”, but now just straight in, I’ve got a stool, I can sit down in the shower and just whatever, it’s good.

Well I’ve had to buy my own walker, which I don’t know if it’s the fibromyalgia or the knees that make me not be able to walk very far, but anyway, I don’t, can’t. So, I mean I bought a nicer one that the one you would get on the NHS, but it’s just annoying that, like my mum, she’s had everything you know, wheelchairs, walkers, everything, rails everywhere you know, it’s all, “Yeah, yeah”, but I’ve got fibromyalgia and no-one gives a damn. I can’t you know, oh, it’s just so annoying.

So getting some kind of, physical aids …

Yeah.

… would be something you know, which can help people with fibromyalgia. So how did you get about the walker, how did you find out you can, who helped you with that?

Well I’ve never been referred to anyone for it. I mean I bought, I bought it, I’ve got, I’ve just bought another one because the first one broke, I bought it about four years ago yeah. I mean I talk to my doctor, I said, “I can’t walk, can’t do this, can’t do that”, she doesn’t say, “Oh, you need help, we’ll find someone to help you”, you know, it’s like oh.