Views on using mobility aids for fibromyalgia and or CFS ir other chronic pain conditions - Page 3 — Scope | Disability forum
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Views on using mobility aids for fibromyalgia and or CFS ir other chronic pain conditions

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Comments

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • LaughingLolly
    LaughingLolly Community member Posts: 100 Pioneering
    I have had some of !y symptoms since teenage and various diagnosis since early twenties. I'm now approaching my 50's and I got a Power chair 3 years ago when I realised life was slipping me by. My then teenage children expressed that they wished I had got a chair much earlier as they felt me not using a chair had ruined their lives! I am a full time carer for the oldest one and he sees me as much 'betrer ' with the chair. When I first got it he saw it as me having got better. He has learning delay and is autistic so speaks from the heart. I knew when he described me as better now I had the chair I had to keep it. I wish I had been diagnosed at school, my life could have gone so differently 
    A laugh a day keeps the psychiatrist at bay. 
  • marmalade
    marmalade Community member Posts: 69 Pioneering
    I am happy to hear you are doing so much better with your chair.  I am too and it is definitely a lifeline for me and allows me to keep functioning beyond a level I could do without it.  I am sorry your children think their lives have been ruined by this, sadly it does make you realise that it does affect your lived ones too and has an impact on them.  Your post is a reminder of that.  Thank you for sharing 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @LaughingLolly and thank you for taking the time to share this with us all. I appreciate how difficult it can be to start using mobility aids but I am glad it has helped you. :)
    Scope

  • Jean Eveleigh
    Jean Eveleigh Scope Member Posts: 185 Pioneering
    I have EDS and if I didn't use my mobility aids *wheelchairs and walking frame) I wouldn't be able to reach the street from my front door - I can walk a little in an environment I know well and feel safe in - and yes sometimes I have to walk a little while my other half or carer carry my frame or chair but I ignore the stares or grumble about them but don't let anyone force me to be housebound out of fear of using myequipment -   -------   my body tells me I kneed it so I use it
  • Nevaehisill
    Nevaehisill Community member Posts: 8 Listener
    I have had some of !y symptoms since teenage and various diagnosis since early twenties. I'm now approaching my 50's and I got a Power chair 3 years ago when I realised life was slipping me by. My then teenage children expressed that they wished I had got a chair much earlier as they felt me not using a chair had ruined their lives! I am a full time carer for the oldest one and he sees me as much 'betrer ' with the chair. When I first got it he saw it as me having got better. He has learning delay and is autistic so speaks from the heart. I knew when he described me as better now I had the chair I had to keep it. I wish I had been diagnosed at school, my life could have gone so differently 

    marmalade said:
    Hi everyone
    Just wondered what your thoughts and views are on this.  It seems a contested area.  Some people are of the view that they would never use aids such as crutches or a wheelchair as they feel it is given in to the conditions.  Also being visibly viewed as disabled and have people look and treat you differently because of your disability can be difficult for some to manage.

    There is also an arguement for using these aids because they allow you to have the freedom and independence that fibromyalgia  CFS, or other chronic pain conditions can take from you. It also allows you to conserve energy and reduce pain so that your able to do other things and get some quality back into your life. 

    Would be interested in your views on this either for you personally or how you would view others in this position.






    I'm 17 right now (18 in Feb) and my doctor is sending me to a specialist as he believes I may have fibromyalga (not sure if I spelt it right). I'm in so much pain all the time and walking only makes it worse. I feel so left out. My friends in college take the stairs up to class and some days I have to take the lift up as I cannot face the stairs. They go out on walks on their lunch breaks and I cannot join them because I won't be able to make it back without being in so much pain and when I crave something I cannot even walk to my local shop to get it. I feel like I'm missing out on so much because of the pain and when I do try to do fun things by the time the pain has kicked in I just want to go home and give up. I know mobility aids like walking sticks and wheelchairs are available but I'm so worried that I'm not "ill enough" for them. I want to be able to go out and do things with my friends but it's so incredibly hard when just going tor a walk can leave me in pain with no energy left for the rest of the day. Does anyone have any advice on overcoming this imposter syndrome and not feeling like I'm not in "enoughhhh" pain. 
  • Steve_in_The_City
    Steve_in_The_City Scope Member Posts: 562 Pioneering
    Hello everyone! I don't think that using aids is giving in to your condition. If an aid gives you your independence back, creates less pain for you and puts you in the position where you can enjoy life more and manage more of those ordinary everyday chores that we all have to do, then I think you should embrace the aid.

    Also, why worry about people staring or what people think? People will always think the worst, you can't change that, so why let it bother you? As for being stared at people stare for all sorts of reasons. So again, why let it bother you?

    I have a complete right to live life to the fullest that I can. I am not going to lock myself away indoors just to please other people or be an inconvenience to them. People will just have to accept me and my mobility scooter, walkers and various aids. And the thing is this: By and large people do accept me and make allowances for my disability, so embrace your aids and get on with your life.
  • WelshBlue
    WelshBlue Community member Posts: 723 Pioneering
    Reminds me of my PIP review, the DM asked if I use a stick to walk ... my answer was I'd love to, but with my grip, I know I'm going flat on my face

    ... not sure he had to laugh so hard when he said he could imagine it

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