Thankyou all.
I am pleased that it didnt turn out to be HSP - who wants a rare disease after all? However, if the dystonia panel comes back negative as well, I may be back to square one, virtually. Good to eliminate things, but until I know what it is I can't get help really, which is frustrating. I hope everyone here is doing well, and thanks again for your kind words. Love and light.
T x
It is frustrating. For me if they don't know they just say "oh it's down to the fibro..." Frustrating as hell!
Are you getting out and about? Meeting up with any friends at all?
Do a little of something that makes you happy every day!
Techie (29-10-20)
Hey, Suzi.
Havent seen friends for a very long time (only really used to see them in Newport when I used to go drinking), but I talk to people by instant message all the time. As for getting about, there is another lock down here in Wales because of the sodding virus! Even if things werent locked down though Im broke so theres nowhere to go really. Go for drives occasionally, but thats about it for now.
Im sorry to hear that they tend to be dismissive with your condition. I know a few people with fibro and it sounds pretty rough - I understand that there is something known as fibro fog which must be very difficult, particularly along with the depression. I hope today is a good one, hon. Speak soon, and thank you.T x
Ahh yes, my son is at uni in Wales so struggling with it too... Fibro fog is frustrating as hell!
As for being broke - are you claiming all you can? Have you spoken to someone from welfare rights or the CAB?
Do a little of something that makes you happy every day!
Techie (29-10-20)
Do you know when you’ll get the dystonia results?
The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.
Techie (29-10-20)
Hey. Whats your son studying and where, Suzi? I did both of my degrees at the university of Wales Newport, as it was then - its the University of South Wales now, mainly based in Pontypridd, I think. As for claiming all I can, I'm on UC but was turned down for PIP earlier this year (I had 8 points and you need 10 or 12 I think). Had some expense here at the end of the summer so just have to wait for the coffers to refill as it were.
As for the dystonia results Paula, I have no idea. Im hoping its before my appointment in December, but I don't know. HSP is a big, complicated panel in comparison to dystonia, so maybe it won't take as long as the HSP one did, I don't know. Either way, I will let you know as soon as I hear something.
Cheers, guys. T x
Actually, not sure where I got that from - dystonia is a larger panel than HSP...
That's where Ben is - Pontypridd at USW doing LawHe's in his second year. It's a fab campus although that hill is s f***er!
Did you not appeal the Pip decision? If not, why not?
Do a little of something that makes you happy every day!
Techie (31-10-20)
Ahhh, cool. I was going to do law, but my memory isnt good enough to remember all the case law, unfortunately - and yes, the hill is pretty harsh!
I did not appeal the PIP ruling - I appealed a disability benefit ruling a couple of years ago, went all the way to tribunal with it and ended up getting nowhere. I guess it just seemed very clear cut to me that I wasnt going to get anywhere so I didnt bother. Which isnt the best idea, probably, but on balance, I thought it was the right idea at the time. I don't know, maybe I should have appealed it - I think a part of me was just tired of being turned down and wasting my time. Depending on what the diagnosis turns out to be, I may reapply, but that will be some way in the future, I think. x
I appealed my PiP ruling - and got an extra 6 points! It can be done
The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.
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