Fibromyalgia

So with the badge someone sort of told me, “Why don’t you just get one of those blue badges?” and I was like, “Well I don’t know how to get one”, and they go, “You just go online and they give it out”, and I’m like, “They just give it out? They don’t want to have like proof or anything?” and they go, “No, it’s quite trusting”, and I was like, “Wow, that’s a first”, because everything now you have to have evidence of your disability and if you don’t have, like a PIP letter then you kind of aren’t treated as if you’ve got a disability even though you do, and I’m still waiting on my results for that.

Yeah, so I kind of put off applying for it for a very long time, and people were just like, “You could get help here, you could get monetary help, which would allow you to pay for things like the chiropractor and therapy that you can’t afford and stuff and it will just give you that help with dealing, with managing your condition and it will help you pay for your prescriptions”, and everything like that. And, so they were just, kept advising me and advising me and advising me and they were like, “Just”, and then it got to the point I was like, “You know, well I will try”.

And, so I applied for it and I’ve had a friend who’s got cerebral palsy helped me with it because she kind of understood how it works and stuff. So I filled out the thing and there was a point where my hand couldn’t write any more so she then took over, so there was a point in the application where my handwriting just changes because it’s no longer me. And it was like with the how my mental health affects working and my daily life, as well as how fibromyalgia affects my daily life.

So yeah, I mean I have a feeling that they’ve declined it because apparently it’s really difficult to be awarded PIP, but. I mean particularly at this moment in time it would be very, very helpful, and then when everything’s back to normal I can seek chiropractors and go back to the therapist and go back to my osteopath and everything like that. I don’t really, yeah, so it’s just a case of waiting and it should be any, any week now that I hear back.

And the first of all, when I was seeking benefits I thought I’d committed a murder. And, but I told everybody it’s all right for them getting their [smiles], their salaries, but I’ve got bills to pay as well which is very important.  

Just coming back a bit, so you talked about earlier, you know, that it had been a bit of a difficulty with the benefits. Can you tell me a bit about that, what made it difficult?

My doctor.

What do you mean with your doctor?

My doctor was the main one. I’m, I wrote him a letter and I just said, “It’s all right for you and your fantastic salary and your expenses. But I’ve got to pay the bills.” It’s really ludicrous that the way we’re behaving, even today, people are struggling. They’ve got to eat, they’ve got to pay the bills. I know, I’m not complaining, really. There’s people worse off than me.

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 process”, 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 in”, 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 here”, 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.

The woman that was doing it was really, really lovely. I tried my best not to get emotional, like I did today, but unfortunately [laughs]. And then, and, so she asked me those questions, but I feel like some questions I should’ve worded differently, because she asked me a question and I gave like a quick answer rather than the long winded answer.

And then I had to do a physical thing, so she had, she had to check my mobility, and I’m relatively hypermobile because I was a gymnast when I was younger so I can like bend over and touch my toes with my legs straight, and that’s not, that doesn’t cause me any problem because my issue isn’t in my lower back, it’s in my upper back, arms, neck mostly and it does sometimes affect my legs.

But, so I was like I did that and I was like, “I shouldn’t really have gone all the way down to the floor, I should’ve just gone almost there”, just in case she thinks, “Oh, she’s absolutely fine with her mobility”, because of that one particular movement, but I was having a really bad pain day that day anyway, so after that, all the things like holding up my arms and stretching them and putting them behind my back,, she could see the physical pain on my face and she could see like the fact I was shaking with pain.

But no, having a diagnosis has definitely made it easier, it means that like I can go and I can like get a sick note from my GP and like give it to, the Department of Work and Pensions and say, “I have this disability, I can’t work because of that”. And that made it a lot easier for me to receive the, the part of universal credit for, the limited capability for work and work related activities, which I had to go to an assessment for that, but I don’t know if they ever would have referred me for an assessment if I had just said, “I have chronic pain”, because it, it’s not great and it kind of sounds like a bit of a scam. Like I think that they’re just like, “Yeah, well a lot of people say they’re in chronic pain so deal with it”. So it’s been helpful.

To me personally it doesn’t matter that much, because it’s just the same things, but at least now, I guess one of the huge problems that I always had was that I felt that nobody believed me. And even now I don’t know if the rheumatologist that I saw actually believed me, but I have my GP, and I can just tell people I have this thing and then they’re, most of the time they don’t know what it is and they’re just like, “Oh, that sounds something bad, I will accept that”, and then they don’t think any more about it. So no, it like, it’s definitely helped.

And the thing, another thing that doesn’t help you very much is the benefit system. When these people that, interview you for PIP and things like that, sadly they’re called health professionals, well I’m afraid they’re biggest lot of amateurs I’ve ever, ever met in my life. They have no idea what they’re speaking about. All they want is their £300 they get for getting people off PIP.

I’m really bitter about this, so is a lot of other people. If only it was real professionals like namely, our doctors and the specialists in hospital. The government should be listening to them what they say because they are the real people that understand the illness. And then even then they are still learning every day.

Can you tell me a bit about this process you know, with the benefit?  So …

Well for instance, a lot of people used to be [points to side] that was it for life, this isn’t a curable, condition, so why every two year do people have to go through this absolute stupidity to prove that they’re still ill? Surely with going on with the doctor and that, okay, you do get people that cheat, but I can guarantee you can hardly cheat with fibro, it is one of these things that is absolutely a stinker to have, and I wish these people would understand it, because when people go to get interviewed for their, reconsideration or whatever you call it, they’re obviously nervous, they’re like this, and this, there’s a, depression is part of this illness as well. Well these amateurs do not have a clue, the damage they are doing to people, not just the people that’s got it but the family as well, it’s ridiculous.

Well it goes back to the [this] clinical nurse specialist in [the city]. I think I may have mentioned this, one of the things she drew to my attention, that was in the aftermath of the change from Disability Living Allowance to Personal Independence Payment. Sorry, I think you used the initial, PIP. And yeah, I mean, what can I say about my experience?

It’s not an easy process. I think that’s a bit of an understatement. I mean just the sheer amount of paperwork. And the other thing is that, and my sister was somebody with… she’s an OT by training, an occupational therapist, but her professional career, most of it has been in community mental health support in [another region]. And when I told her about, “Oh, I’ve been recommended to apply,” I mean, she was saying, “Oh, you need to be very careful,” because all these questions in the application paperwork, are, they can seem quite benign but if you’re not careful, you can give an answer which will not do you any favours. So you almost need coaching, a bit like coaching in a job interview and so on, on how to answer the questions in the right way. My sister was very cynical about it, you know, “Well, oh, because he’s answered this, then oh well, he’s not eligible for that,” you know? It’s almost as stark as that. I just try to be as frank and honest as I could.

The people I saw that told me to go back to work were basically from the money side of it, so all they wanted to do was cut people off the list and stop paying them money. And quite a lot of the questions I answered, there’s no way to describe this, they completely lied. I told them an answer and they wrote something entirely different, and I complained bitterly and I just got completely stonewalled. They wrote completely different things in the report than I’d told them, and it was just a load of lies and it was just the thing to get you to go to stop you from signing on and getting any money while you couldn’t work, which again is, that is actually depressing.

I never, ever want to not work if I can work, I’m not that way inclined, but when you can hardly haul yourself out of bed and you can hardly stay awake, and one of the things I wrote down was the fact that you know, I literally couldn’t stay awake. I was sleeping at that point about 18/20 hours a day, and when I did get up I was just completely out of it and they said, “Well that’s not on this list that you can’t stay awake, it’s not here, so you just discount that”.

I was seeing my GP maybe every month, then I was still on the books for my, where I worked, but eventually after my time run out, six months, or, I had to leave my work. So then I had to try and go through the benefits system, which wasn’t that great. Originally I had a assessment and I was awarded 14 points but you needed 15 points, so I was, all I was getting was like £40 a week, but I appealed and somebody from the Citizens Advice Bureau, they helped me from my appeal and I won my appeal. So I was put back on to incapacity benefit, it was that at the time. So I had no more problems with the benefit system then.

How did you feel initially about you know, needing to go through the whole process?

It was, very stressful and it made your condition worse, and you felt if it was your word against the assessor’s word, then they write a report and it goes to the DWP decision maker and sort of they decide. So they don’t really get to see you, they just have to take the word of the person that did the assessment.

Yeah, it’s like, a personal independence …

Payment.

… payment thing, yeah, yeah, because that can help, especially if you’re not working and things like that, or even, I think even if, if you do work you’re able to claim that to get help, yeah.

I thought that was brilliant because I wasn’t aware of anything like that, so yeah, that was really helpful, and I did look into it and, and I have been successful. I went for, a review with a doctor there after I filled out the, well I went to Citizens Advice and they helped me fill out the form, and then, I had the assessment and I’ve been granted, I’ve been, I’ve got PIP now, which is, a great help. But no, I thought that was really, really helpful.

No, when I got, when I got the form, Facebook it was because a lot of the people on Facebook, the fibromyalgia group there, advise you to apply for it, and then, so I think I went on and I don’t know, I might’ve put on there that I’d received the form and they advised that I went to Citizens Advice, which I did do, and this gentleman went through it with me, which was quite embarrassing for some of the questions it’s quite, I don’t know if derogatory is the right word, but yeah, it’s not, it’s not a nice form.