to wheelchair or to not wheelchair - Fibromyalgia Acti...

Fibromyalgia Action UK

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to wheelchair or to not wheelchair

sarah-d profile image
11 Replies

ive been having alot of trouble with pain in my legs i went a short walk today and ended up in agony we are taking the kids to th tramway museum with my family but as you prob have your self my mum is not getting to grips with what i have so you can imagine the things she says now ive hired a wheelchair just in case but im not sure how mum will react and i dont think i could cope if she started having a go

so my question is what would you do use it or not?

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sarah-d profile image
sarah-d
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11 Replies
bruiser profile image
bruiser

i used an electric scooter on a day out last year with my daughter, i was so nervous i thought people were looking and wanted to know why i was in it, but ny daughter and i made a joke of it all it wouldnt go up steep hills and we ended up laughing all day just go and enjoy and if your mum sees ur happy she will be fine with it im sure, have a great time xx

Sandy247 profile image
Sandy247

Hi Sarah you say that you have hired a wheelchair but did you know that you can apply for one, free of charge, through your GP. Your GP holds the relevant forms. They need to completed by both of you. My GP asked me to fill the form in and then bring it to the next appointment where she could fill in the relevant part s to her and answer any questions of mine. I have a wonderful brand new wheelchair now. Well worth it,

If the roles were reversed would your mother expect you to accept her in a wheelchair - yes? Well there you have it. A mother should never want to she her child [no matter how old that child] in pain if it can be avoided.

Tibby3a profile image
Tibby3a in reply to Sandy247

Hi Sandy247

Are you sure about the GP and the wheelchair? I am just asking as my disability is getting worse and walking is becoming slower and more painful, I have fibromyalgia, ploymyalgia, RA and Fibrous Dysplasia. To get about I use two crutches but my upper joints are suffering. A wheelchair may help when I am very tired or going through a 10/10 pain time. Sue x

Sandy247 profile image
Sandy247 in reply to Tibby3a

Hi Tibby I am 100% sure. I have Fibro, peripheral Neuropathy, CFS and depression. My mobility is getting worse and I happened to ask my Dr whether she thought I should use a wheelchair. She told me about the forms to be completed - they hold them at the surgery. She told me how to complete the form too. Once your wheelchair arrives you cannot use it until an Occupational Therapist has been to 'fit' the chair to you and make sure that it is in A1 condition. You sign a form for the wheelchair and that form also has telephone numbers of who you contact should your wheelchair become damaged. -This is all fee of charge. What you do need to pay for is the wheelchair 'cover' that you need to put over you when it rains and any other accessories. There are a variety of wheelchairs to choose from for example someone has to push mine - as I am not strong enough so the wheels are not huge. But you can get wheelchairs that you manoeuvre yourself..

Why not ring your Drs surgery and ask them for a form?

Hope this helps. Shell x

Tibby3a profile image
Tibby3a in reply to Sandy247

HI Sandy

I went to my GP surgery, they had no idea what I was talking about, I printed off the thread above and said the people were wrong as they don not do this and anyway its not up to the idividual patient but the consultant who says what equipment I need. I was possitive but now shot down again. I am on three waiting lists for other doctors but in the words of one surgery 'you go on the list and we wait for people to move or die and then you move up the list'. So I guess I will just put up with the crutches and the pain. But anyway thatnks for the info. x

Sandy247 profile image
Sandy247 in reply to Tibby3a

This is absolutely ridiculous. I am furious at the way you have been treated. How dare they. I am not wrong - as Abbeystead will confirm - she got the forms from her Doctor but didn't return them. The only thing I can possible think of is that your GP does not realise that he/she can say what equipment you need - it does not need to be a consultant. Please go to the DirectGov link below, print it off and [I have to be polite here] show it to your GP.It states that you can be referred to wheelchair services by your GP or a consultant or Occupational Therapist it does not have to be a therapist.

webarchive.nationalarchives...

You could always contact your local occupational Therapists and ask for them to give you an assessment. I had one and I got various devices to help me around the house. But I digress.

Please do not give up. Your GP is wrong - is he or she going to say that DirectGov is wrong?

If you still have problems I suggest you contact your local LINKS nhs.uk/NHSEngland/links/Pag... who should be able to help you.

Please let me know what happens. I will help you every step of the way to getting a wheelchair, Please do not give up. I promise to help you all I can. Take care. Shell x

sarah-d profile image
sarah-d

sorry it wont let me reply to you seperately for some reason i have tried to get my mum to read up on fibro but im guessing its still sat on her computer un read as she has not spoken to me about it as the the info about the form from gp thank you so much for telling me this i didnt know this so will sort this out while i have my hire chair

thanks again sarah

please try to explain to your mum, no one wants or would choose to use I wheelchair if they didnt need one, its a big step to take, I know Im still struggling with it, I hope things go well for you

kraftyk8 profile image
kraftyk8

Hi Sarah,

I know you wouldn't even think about getting a wheelchair unless you had a very good reason, none of us would.

However, if your very good reason is that it will enable you to do things and go places that you can't manage to walk, because of the immediate pain and the lasting pain and fatigue that follows, you can't get a much better reason than that.

I sure your mum wouldn't want you to stop doing things you couldn't do before and it sounds she just hasn't got to grips with how badly FMS affects your life.

As well as trying the great suggestions that have already be posted, perhaps you should print off the Info sheets given on the Fibro Action site and NHS Choices for her to read.

fibroaction.org/Pages/What-...

nhs.uk/Conditions/Fibromyal...

They may well give her a much better understanding.

Talking to your mum about this is really important, if she doesn't understand the condition, as your mum, she may be frightened that it is some terrible condition and no mum wants that for her child. So the last thing she will want to see is evidence of it, such as a wheelchair.

Your decision is right and you need to reassure her that the wheelchair is just to use when you go places, so you can enjoy yourself along with the rest of the family. Once she understands she might even be happy to give you a push!

Good luck and soft gentle hugs, kate

Abbeystead profile image
Abbeystead

Hi ev eryone. I dont go out at all now because it is impossible for me to walk any distance at all, even across the house to the bus stop. Enquired about wheelchair and doctor gave me forms to fill in. When I got home my husband, although really good in other areas, said he wouldn't push a wheelhair!! We're both in our 70's now and a bit like Alf Garnet and his wife. (the silly old moo). Could see him taking me to the steepest hill and letting go of me. Have had FM/ME/CS/LYMPHODEAMA etc.etc. for 25 years now So haven't bothered sending the forms in. So much for "for better,for worse". Not really bothered because I've been ill that long now that agoraphobia has set in. I potter around my garden. This FM ruins your life. Used to work in town and spend my lunchtimes dashing around the shops every day, as well as bringing up a family.Sad but too tired to get angry these days - haven;t got the energy.

Shooby profile image
Shooby

My dear Sarah-d I know exactly how you feel my family have no idea what its like, but please if you need to use the wheelchair then DO IT your health is more important than the derisory comments from anyone, just do as you need to and don't let your mums comments bother you WE ALL BELIEVE IN YOU HERE take care. Shooby xx

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