Well, on the day that I was there, my brother was with me. There was the Welfare Rights Officer, and you go before a panel of a man that knows all about disability rights, a judge and a retired GP. Now, the retired GP, I’ll say was well over retiring age, possibly never knew much about Ehlers Danlos or ever heard or it or even fibromyalgia. And I just thought some of the questions, you know, If there’s no one at home, how do you make food? Have you got a microwave No, I don’t use a microwave. I’ve bought a lot of gadgets, I’ve bought one of those machines that you just press a button to get hot water, instant hot water so that I don’t have to lift a kettle, and I fill it using a plastic jug, which I can lift. And I’ve bought gadgets for opening cans and stuff.

So they ask you questions like that about the cooking and stuff, How do you manage I says, Well, I just don’t peel any vegetables, you just buy them ready-prepared But, can you manage to open a tin Yeah, with great difficulty Things like that. How do you wash your hair Well, I’ve took the bath out and I’ve got a wet floor room. Before that I couldn’t get in the bath So they ask you questions like that. How do you get your hair done Well, my friend’s a hairdresser and she normally comes to the house, or if I feel okay, I go to the shop

I just thought some of the questions were the understanding was they didn’t really get to find out what you were like on a very bad day. And when I left that day, there was a lady in a wheelchair who had been turned down as well and she was very angry, was shouting and swearing, and I thought, That’s it, I’ll manage on my pension. There’s no way I’m putting myself through this again so I’ve never appealed it again. In actual fact, I’m worse now because of the dislocation last year and me now having to use a mobility scooter but I’ve never been back.

And then another problem which I didn’t like when I was diagnosed was that, again, I’d probably realised that myself was, you would make arrangements to do something – go to a theatre or go for dinner or go out – and then when the day came or evening, you just couldn’t go so you’d cancel, had to cancel a lot of events and things because you’re just not up for it on the actual day.

Well, it does because people don’t want to listen to you. Because nine times out of ten, you’re moaning about something, something’s sore, or you can’t be bothered meeting them or you cancel at the last minute. So, it has a big impact onsocially, it does have a big impact. I mean, I always just try my best and I get up and get on with it, but you know, but I could be out and I could be feeling terrible, but I’ll go just so I don’t let people down. You force yourself to go more often than not. But what do you do? Either that or you become socially isolated, which I’m sure would be much worse.

What could be done better? If the people that you went to see were more understanding, if they listened to you. I know that there’s nothing that can be done for it, but if they’d listened to your history in the first place and maybe connected the dots, for instance, with the hypermobility, you do have problems with your bowel, your bladder, your heart, your eyes, your skin – you get very stretchy skin. Mine isn’t overly stretchy apart from my eyes. If everything had been connected, you’d be diagnosed sooner. There’s more understandingalthough you know there’s no magic pill but if somebody would be just a wee bit more kinder when they’re explaining to youI thought one rheumatologist I actually saw was very flippant.

Well, I would like the doctor to be more understanding. I would then like them to say, Well, there is no magic pill but physio does help you know, get a specialist physio. I mean, one for [this region], for the whole of [this region] or whatever.

You know, if they concentrated on it likeI know it’s, again, down to finances as well and stuff, but if they concentrated on, you know, if everybody had this three-week thing, you went away and you learnt things about your condition, what you can do to make yourself better, etc. That might be beneficial.

Well, for instance, if you’re diabetic, they’ll have a diabetic clinic, a diabetic nurse specialist. If you have breast cancer, you have a breast care nurse specialist. There’s nothing for fibromyalgia, I don’t think that there’s a doctor that’s an expert on fibromyalgia, that I know of, in Scotland, or subsequently, say, a specialist nurse orjust someone that, with the amount of people that have got it now, having somebody thatyou know, a specialist doctor or nurse that would concentrate on the one condition and learn everything there is possible about it, and how to treat people that have the condition would be, would be ideal.

No, I don’t use a microwave. I’ve bought a lot of gadgets, I’ve bought one of those machines that you just press a button to get hot water, instant hot water so that I don’t have to lift a kettle, and I fill it using a plastic jug, which I can lift. And I’ve bought gadgets for opening cans and stuff.

So they ask you questions like that about the cooking and stuff, How do you manage I says, Well, I just don’t peel any vegetables, you just buy them ready-prepared But, can you manage to open a tin Yeah, with great difficulty Things like that. How do you wash your hair Well, I’ve took the bath out and I’ve got a wet floor room. Before that I couldn’t get in the bath So they ask you questions like that. How do you get your hair done Well, my friend’s a hairdresser and she normally comes to the house, or if I feel okay, I go to the shop

Well, I think I lost out. You lose out on your pension because you go earlier and things, so yeah, it does affect you financially. And then, so what I tried to do was it used to be Disability Living Allowance, it’s now PIP, so I applied for that and I got the low-care allowance. And I appealed it because my car’s out there, it’s 18 years old and [section removed] it’s a manual car, it’s not an automatic. I thought I’d try and even apply for mobility and I got turned down. So I took a Welfare Rights person, I went for an appeal and I still got turned down. So financially, I’ve got my pension and I’ve got the PIP, and I just manage, you know?

How was that, you know, the process, how did you experience that, you know, with the PIP application? Because we heard from some other participants that it was a really
it’s very stressful. You’re there for over two hours, it’s questions, questions, questions, questions, questions non-stop. And actually, one time they sent me somewhere, I think it was for a medical, and I think I hadI’m not sure, I either had a walking stick or crutches, I can’t remember, and I can’t get up the stairs. They have a ramp but they only put it out if you’re in a wheelchair, and they wouldn’t put it out, and I had great difficulty getting up the stairs.

Well, every time a referral was made, whether it be to a surgeon or a physician or a geneticist. You were quite happy that you were going to see, but ultimately you never get an answer. So you were happy that someone was at least trying to find out what was wrong, to give you kind of peace of mind so that nobody thoughtI mean, the names I’ve been called over the years, You’re fat, you’re lazy, you’re a hypochondriac etc., it’s really hurtful when you know deep inside that there’s something wrong but you’ve never actually been diagnosed.

So getting a name for it, in a sense, helps to know that you’re not imagining things. But at the same time, there’s still nothing that can be done, so I don’t know what the answer to that means. You’re still stuck in the middle, you know, waiting to seethey’ll make this miracle pill that the rheumatologist says doesn’t exist.

I think I first noticed about more than 20 years ago. My mum had a stroke and was in a wheelchair, I had to do a lot of heavy lifting, sleep beside her at night, turn her in bed during the night, and the pains would just get worse after that. I subsequently looked after my grandmother who had dementia, which is very challenging, plus I worked full-time.

In December 1999, my grandma passed away and then in January, the Millennium, I had gone to visit my dad, who I’d seen previously on the 23rdDecember and to collect my gran’s things. When I got to the nursing home, I met a member of staff who said, I’m sorry to hear about your grandmother I said, That’s fine, she was 86 blah, blah, blah. And she said, And your dad and I said, What about my dad and she said, He died on New Year’s Day two weeks after my grandmother. And I said, Well, I would like to think you would know where my dad’s body was? I hope the funeral’s not passed because by this time it was 12thJanuary.

His body was in a funeral director’s and the funeral was the next day. So I got my brothers and my sister together and we went to the funeral, and then shortly after that, I think it was about a year maybe, a wee bit more than a year, my mum passed away. And I think just steadily after that, got worse and worse.

So two years ago, I decided to buy a small hot tub, just an inflatable, one, not any big, majora small one. And I have a small summerhouse with electricity which powers it. It heats up to 40 degrees and it’s the only time since my diagnosis of fibromyalgia, Ehlers Danlos, etc., that I have no pain, when I’m in that hot tub. You can only stay in it for a certain length of time because it goes from 40 degrees, it works its way down once the cover’s off, but you could be in it for half an hour and have no pain.

And howis there, like, afterwards, do you feel a difference?

You feel okay. You usually get quite a good sleep that night. Okay the next day, the pain will be back again, but maybe not as severe, so if you get a good spell of weather and you can continue to use it, it’s great. Especially in the winter, on the cold, crisp days that it’s not raining, I still go out. it’s outside but I’ve got to walk across the garden to get there, but I’m all wrapped up. You get wrapped up, back out, and there’s a heating on in the summerhouse. And it’s just fantastic. But sadly due to the Scottish weather, [section removed] it’s infrequent use.