Dissability: Hello fellow fibro people... - Fibromyalgia Acti...

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Dissability

SquareD6 profile image
15 Replies

Hello fellow fibro people, I was at hydrotherapy last sunday & I have been advised by the physio there to claim for a disabled person freedom pass & a blue badge. My husband got me the forms & I haven't been able to fill them in as I get too emotional. I guess I saw myself as having an illness & not as a disabled person, if I qualify for the pass & the badge then it kinda confirms I won't get better & i'm only going to get worse.

The physio that I see agreed with the hydro physio, I feel so down at the moment & my family just don't understand & then you get told to lose weight as well by the doctor. The doctors say you need to take your medication which causes your metabolism to slow down causing the weight gain, but you can't stop the medication as the pain gets too bad, & if you don't eat your body tends not to function so well.

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SquareD6 profile image
SquareD6
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15 Replies
trekster22 profile image
trekster22

Even though i use a wheelchair i wouldn't be able to cope without my bus pass, train discount card or my blue badge. If you can try and think of it as society causing the disability rather than you being disabled.

TheAuthor profile image
TheAuthor

I am so sorry to read of how you are feeling about this issue, and I would say that nobody knows the future and we never know what is around the corner? Please remember that these facilities are there to enhance quality of life and not a label of disability. So please make use of them to enhance YOUR quality of life and enjoy what you are entitled too.

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

clare_hart profile image
clare_hart in reply to TheAuthor

I agree wtih you Ken. I have been ruled as being disabled. But the "disclaimer" says to let the administration (the Social Security Administration in the US where I live) know if I am able to go back to work, And I will possibly receive forms to fill out to indicate that I am still under care for my disability - with medical records to show this. So being determined "disabled," does not mean that this is a permanent condition. It may be. I believe it is in my situation, but it may not be so for others.

Piggysqueak profile image
Piggysqueak

Dear squared6

I completely understand what your saying it is devastating I know

I did not fill dla forms in for 6 months ,I looked at them everyday . The worst I think was my walking stick which I hid in my ironing pile . Eventually after the sadness you realise that you need the blue badge etc and when your ready you stop crying and just do it . I'm sure others have felt the same I really do want you to know I have been where you are and it's hard it life changing but you will do the forms when you've taken it all in ,it is really just to help you and make things easier but that's not what you see at first .

Take care and nice to meet you

Love squeak 🐷🐭xx

Sewnsew profile image
Sewnsew

My blue badge has made life so much easier for me. I find it difficult to walk very far and if I try to then I'm out of action for days. Now I can park near most of the places I want to go, it's brilliant. I'm sure once you are using it you will wish you had got one sooner. Just enjoy it!

fenbadger profile image
fenbadger

Hi Sarah. Having a blue badge doesn't automatically mean you'll get worse. It means you need that kind of support NOW. Having it may help you do other things better. So accept it gladly, for however long you need it. If it helps you cope for now, then there's hope but no guarantee for improvement. You seem to be stuck in several vicious cycles. You don't need to "starve" yourself to eat well. A healthy balance diet is what's needed. There are books on fibromyalgia diets out there, naturally I cant recommend one. Up to a point the right diet may help, as fibromites sometimes can be short in certain nutrients - vitamins and/or minerals.

I understand your feelings, even though i have a blue badge and use a wheelchair i still find it hard to consider myself as disabled and the fact that i am saddens me.

But without the BB and W chair i would be stuck in the house with no way of getting out, instead i am searching for an easy pitch tent and easy put together camping equipment so that we can continue on with our lives as near as possible to how they have always been.

These things are there to help us while we wait and hope for a treatment or cure and it may be possible that with new treatments we can throw away our aids to life as it is now.

Heres to that time

Lots of hugs sue xxxxxxxxxxx

trekster22 profile image
trekster22 in reply to

i took my wheelchair out with me to the swimming pool and stared at it thinking "how did i get so bad" then i get upset because the NHS refused to recognise my hidden pain because im also autistic.

RobertaWorthing profile image
RobertaWorthing

I know just how you feel, I am just the same. A couple of weeks ago I got my Blue Badge and the disability allowance was granted. However, I was advised NOT to fill in the forms myself but to get someone who knew the ropes to do it. I got on to the Citizens Advice Bureau and a very pleasant gentleman came along and completed the forms - I wouldn't ever have admitted just how decrepit I am, but he asked the questions in a very gentle manner in order to get the honest answers. At the same time he filled in a questionnaire about my husband's health, and he has also been advised that he is eligible for the same benefits. They are benefits, not charity, and we are entitled to get the help we need after working until we had to retire, so go ahead and contact the CAB because any help you can get is going to make life a bit easier. Do do it, and all the best. PS: If you do get the allowances, your family will then know and accept that you really are not well and may stop bullying you.

I totally understand. I too have found it very difficult to admit that I need help and I can no longer do the things I used to. I have to use crutches and now cant go anywhere without them but I do remember when first had problems trying to hide my walking stick because I didnt want to be seen with it but it would have made walking easier and stopped me falling. My blue badge has been a godsend as before I would not go out because I cant walk far but now I can park closer, I go out more. I still have days when I cry for a life I once had and I do get depressed but I am trying to focus on what I can do. Gentle hugs Joolz.x

Poppy-poppy profile image
Poppy-poppy

Hi, I'm also the same from being a very active (badminton a couple times a week, swimming, hill walking, dog training and cycling Zumba and gym activities, I can no longer go to the shops or for a short walk without my wheelers, rollater ,fifty odd I am now 65 and grandchildren will never know me as that active person because they were two young 6 & 8 ,2 boys and two girls, and I will always be known as poorly nana, I think you have to have a grieving period for your last health and until that period is over their is nothing anyone can say or do to make you feel better I know that it is unfair but on the bright side we are a lot better off than an awful lot of children and I am better off again because I was older again and I am also four stone heavier. Ha such is life... Keep you head up. Poppy

SquareD6 profile image
SquareD6

Thank you all for your support and comments. My husband keeps asking me when he'll get his old wife back he said he doesn't like this new one that is in constant pain and so tired all the time. My daughter is autistic and I have been told I have a number of autistic traits so I understand your difficulties.

I'm not allowed to use my walking aid to get to work, my Manager said if I need to use a walking aid i'm not fit to be at work, I could persue it but, as she pointed out i'm on a zero hour contract so she wouldn't give me any work.

I used to love my job working with 2 year olds but now every day is a struggle and I look forward to the weekend and being able to stay in bed.

My daughter bless her doesn't understand why I can't go ice skating, bike riding, play tennis, or do a lot of things with her that I used to do, my son is 2 years older than her and some days he struggles seeing me how I am, I try to put on a brave face but I guess he knows me to well.

My dad said if I can get a disabled person freedom pass it'll save me loads of money on bus fare.

I guess I will have to dig deep and try to accept this is how I am now until a cure for fibro can be found.

Hartleyhare2 profile image
Hartleyhare2

Yes the bus pass makes all travel in your home county free. Wish they would do the same for the trains only a third off. In my county Hampshire it was done in two weeks if you send a picture and paperwork. Unfortunately they have just cancelled the twenty year old bus route as it's not profitable as they build 1700 new houses with two parking spaces each!

chrissy30 profile image
chrissy30

So sorry to hear how you feel and I know that feeling but in the end I acccepted it and filled in the forms and glad I did as the DLA and blue badge have helped me practically to get around and get help I need. I look at it this way I'm not disabled but just need a bit of help here and there and after all I paid in for the National Insurance so I'm entitled to help. Depression can make things worse so try to concentrate on what you can do on your good days as that does help. One day you never know they may have a cure for fibro. Today I felt like death warmed up and left over and forgot to do things but I just laugh at myself now after all there years with the fibro and other health issues. Mind you I'm 67 so expect to get a bit cranky at times and do things like put the sugar in the fridge and the milk in the cupboard and can't find my glasses or handbag. I find trying to stay positive helps me but I know how difficult and depressing it can be when one is diagnosed with illness that messes up life. First time I drove my electric buggy I ended up in a hedge and was so embarrassed that I just reversed out and hoped no had seen me and shot off down the road!

Love and hugs to you.

ZAHM profile image
ZAHM

SquareDS6 . I am positive that you are eligible some form of benefit not certain with all the changes in place but surely you should.

Good luck.

Zah.

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