Fighting Government

Ahoppy73

New member
Joined
Jan 2, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
03/2018
Country
UK
Had a tribunal today after waiting 18 months since asking for help with mobility/ getting around and was knocked back again because I've actually been getting out as advised despite the pain? Don’t understand?

Experts tell me not to sit there and let condition win but yet i’m penalized for doing so? No one on the panel of three has Fibromyalgia.

I explained that in five years of suffering the only experts I've come across are SUFFERERS. Will non sufferers ever understand?
 
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administrator

Moderator
Joined
Nov 22, 2019
Messages
6
Reason
DX FIBRO
Diagnosis
08/2012
Country
CA
State
ON
I can feel your frustration. I'm not sure what your tribunal consisted of, but it sounds like the outcome was disappointing. It would take a deft touch to make three individuals that have never come across, researched, or encountered someone with fibromyalgia to make sense of the pain and discomfort it can cause.

Good for you for getting out and doing your best to keep on moving.
 

Ahoppy73

New member
Joined
Jan 2, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
03/2018
Country
UK
So for me to get around i have to use public transport ( buses) as they are cheaper .. tried to explain that walking to bus stop, waiting for bus , bus journey all aggravate , spike my pain so no matter where i go by the time i arrive i’m already in agony ...so pointless going to gym , swimming , pain clinics etc as defeating object ...if i had a smooth ride to these places from doorstep then i could be in a reasonable state to begin some form of exercise to start to be more mobile .. as it stands they have made sure i’m not going to be able to begin a regime so now i feel they just want me to stay in and let the condition take over ?? 🙈🙈😞😞😞
 

sunkacola

Senior member
Joined
Dec 2, 2016
Messages
335
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Ahoppy, I fully understand your anger and frustration and completely sympathize (and empathize) with how you feel. It feels as though it is a conspiracy to keep you down, and I know that feeling.

I don't know if this will help or not, but it helped me. I have had to take a huge step back, and reconsider the things that happened to me, the things people say, the things people do, in relation to my fibro and the difficulties that it poses in my life. What has helped me is to realize, and to get it firmly in my head, that the people responsible for saying yes or no to something like your transportation problem are Not doing what they are doing in order to keep me (or you) down. They aren't trying to make your life worse. The sad and inescapable fact is that they don't care enough about you as an individual to try to make your life worse. They just don't care, period.

They can't care. They are professionals with a crumby job and all they can do is follow some arbitrary set of rules created by people in offices who never meet the people they are supposed to be helping, let alone do any of them have or understand the diseases the people affected by their decisions have. Nothing is personal. That's the problem, but it is also the beauty of it because if you fully accept that it is all impersonal you can stop having an emotional response to it.

Having an emotional response is natural and understandable. BUT, stress makes fibro worse. And while you are emotional you are less effective. So for me, it helps to remember that no one is against me, but I have to take care of myself on my own for the most part. It's hard, but to the degree that I can accept it I can be peaceful about it and that gives me more energy to deal with the problems.

If you can't get to the gym, you can still exercise. I have worked out with exercise videos a lot, myself. There are videos on YouTube or DVDs you can buy. You can just lift tin food cans to do arm strengthening exercise. You can sit down and stand up many times. You can do stuff even in a chair. Or a short walk. Whatever you can do.

I hope this helps.
 

Ahoppy73

New member
Joined
Jan 2, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
03/2018
Country
UK
Thank you and i know you are right , its just raw at the moment .. you are defo right about the emotion and stress really hightens the pain also being down about it ..
I will pick myself back up soon because i have to .
Yes i can do the exercises at home but i live alone so for me going to the places to exercise is also a social event which is very important for people with fibro ...Thank you
 
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