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

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.
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Comments

  • marmalade
    marmalade Member Posts: 69 Pioneering
    hi @CazBee

    that's a very healthy attitude.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Interesting discussion, @marmalade! In a completely personal capacity, I was very insecure about becoming a powerchair user but after getting mine in June, it's completely changed my way of life and given me so much of my independence back!  It's all about doing what's right for you :)
  • marmalade
    marmalade Member Posts: 69 Pioneering
    @Pippa_Scope
    Yes thats how i feel about mine.  I now have the energy to do other things that are more pleasurable rather than being exhausted and in pain doing essential stuff.  I know for some its difficult to take that step but for me it was the rigjt thing, esoecially a power chair as i now have complete independence.  Or at least i will have as soon as i get a hoist sorted for my car. 

    Where you initially self conscious when you startes using yours.  I still dont like the stares i get but they do noy bother me to the point that i would not use my chair. 
  • ncps
    ncps Member Posts: 30 Courageous
    I used to have having to use my walking frame but my partner said to me, I don't understand, if it means you can do more with less pain what's the problem? This was said out of pure love, and confusion. I vary day by day so although I'm in pain everyday I sometimes use nothing, other times I use a stick, walking frame or wheelchair.

    Don't let what others think Rob you of a better quality of life, no one would choose to live like this, you have ever right to use aids as you need them.?

    Lou

    Northants chronic pain support

    www.ncpsuk.com


  • sunflower
    sunflower Member Posts: 33 Courageous
    This is my dilemma right now. I have chronic migraine and ME, have had to give up my teaching career and rarely leave the house. On the days I dont have so much head pain, I can move around the house, just get tired. On good days, I meet friends at a local coffee shop. This is the extent of my life, a once fortnightly coffee trip. I just get tired after a trip out. Do I get a stick for these trips out to stop me getting so tired? I'm just not sure I'm bad enough to use a stick? I wouldn't have the strength to put a scooter in the car. Driving the 5 mins to have coffee is enough of a strain.
    Please offer your thoughts, I'm going round in circles.
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    I am definitely one of those people who have refused such aids.

    I hate people knowing I have multiple conditions that disable me.

    Both my Mom Sister have to use walking crutches so this makes me even more conscious of accepting an aid and using it.

    I hate having to be stretchered or wheeled into the ambulance when i’ve had an attack.

    I probably get two days a month when I have the strength to leave the house but after 5 minutes i’m At the verge of passing out.

    so I choose to stay in now till I hopefully get to a point where I can manage my conditions.
  • marmalade
    marmalade Member Posts: 69 Pioneering
    Hi @sunflower
    I understand your dilemma.  I think it is very difficult for people who have previously been very active and very driven to accept the need for aids.  that said I also think there is a clear argument for them.  If you have fatigue then a stick I feel an add to the woes.  I have M.E and fibromyalgia and found the stick and crutches very painful and tiring to use.  I invested in a pair of smart crutches that allow you to use your forearms and also allows you to lean on them a bit more.  depending on how I am feeling I can use just one and its enough.  There are times however I use a power chair, which again I purchased myself.  I can only use this when someone is with me to help get it in and out of the car.  I am currently looking into a hoist for the back of my car so that I can be fully independent.  They do work and make things less tiring which allows me to do other things.  It's about the quality of life.

    I hope you can figure out what works for you.  if you cannot get out of the house much and struggle to drive a short distance for a coffee then I would say that is enough for you to consider your options.  One of the things I did before deciding on a powerchair was to borrow one from shopmobility to see if it was really worth it for me and it absolutely was.  so that is something to consider.  If it conserves energy and allows to have the energy for other things in your life then it has to be worth considering.  Good luck
  • [Deleted User]
    [Deleted User] Posts: 587 Listener
    I'm 44, I've had health problems since I was a young un which has gotten worse over time. I use aids, I have a stick, not only does it help me with walking (when I do actually go out) it helps me with my balance to a degree. 

    I also have a shower chair. Using aids doesn't bother me at all because I know they are helping me at the end of the day :)

    People have to do what's right for them and their own situation.
  • sunflower
    sunflower Member Posts: 33 Courageous
    Thanks for the replies. Part of my problem is that because on my good days, I can walk, I feel why do I need an aid. It's an internal battle with myself, where I have a voice saying aids are for people who can't walk. 

    But I know, I can't walk far without getting the shakes.

    I get PIP, and filling in the form was a shock to me as it highlighted how debilitated my conditions make me.

    I am a single parent and one of my children is going through assessments for asd. 

    When I have mentioned getting an aid, my 12 and 14 year olds expressed horror at the thought. I know that's just young teenagers, but it adds to my thought that I shouldn't get one.

    In my 'previous life' I was strong, self confident and a teacher. Now I can hardly hold it all together.
  • marmalade
    marmalade Member Posts: 69 Pioneering
    I hear you @sunflower but clearly you need something to support you.  I certainly wouldn't be put off because of your children.  My daughter was 13 when I first needed a wheelchair she had no issues with it at all but even if she did she would have to deal with it.  Once they see that it is actually helping you  and gives you more quality in your life which ultimately benefits them then they will be fun I am sure.  However this is your life and you need to do whats right for you.  

    Its okay to only need them periodically.  It doesn't mean you don't need them you just don't need them today but maybe you will need them tomorrow and that's okay too.  But they are there when you need them.
  • sunflower
    sunflower Member Posts: 33 Courageous
    Everything everyone has said makes perfect sense. Coming to terms with being chronically ill, after previously being well and active, takes a lot of getting used to. 
    I know I havent come to terms with being medically retired from teaching, and I guess mobility aids are a very visual sign that I'm poorly. 

    It's my own issues I need to deal with, but I think if I can get more confidence getting out on my good days, I'll feel better.

    I already have a device for holding my hair dryer, and handles for the bath. 

    So marmalade, you found smart crutches useful? Can I ask why you didn't find a stick useful? If it's too personal, no worries. I'm just information gathering.
    X
  • marmalade
    marmalade Member Posts: 69 Pioneering
    Hi @sunflower
    Not at all, ask anything you want.  I hear you it takes a long time to accept your situation.  Yes i found a stick and normal crutches very painful to use.  My fibromyalgia causes pain in my hands, fingers and wrists and a stick or crutches just excarcerbated the pain.  However if you do not have that issue then you may well find them useful.  My sister in law has a condition that causes fatigue and she finds a stick very helpful and they come in so many designs now, they can actually look good.  The smart crutch allows me to use my forearms with minimum grip on my hands and are very strong and stable allowing me to lean on them as much as i need to support me.  They are a bit expensive but i have found them worth every penny.  Just google smart crutch and have a look.  

    Please ask anything you want .
  • Tilly57
    Tilly57 Member Posts: 8 Connected
    edited January 2019
    Hi, this is something I am wrestling with at the moment.  I would love to get to a point where I felt comfortable using an aid, and when I do I can't really handle the looks and the questions because I look "able-bodied" but I have awful ME and the doctors are now exploring whether I also have fibromyalgia because of the constant pain.  I recently attended an event and I contacted them months in advance to find out about the venue and if they had lifts (I really, really struggle with walking up and down stairs).  I was told that they did and if I needed to use the lift I should let someone know.  When I got to the venue, what they had was a stair lift and I felt too embarrassed to use it :-(  I therefore used the stairs, and because the toilets were on a lower level - I repeatedly used the stairs and ended up being in a lot of pain that day, followed by three days in bed, relapsed and am still recovering. I am beating myself up a little bit because if I just used the stair lift, I would not have had such a bad crash/bust.  After three years, I'm still not used to the fact that I have this condition and like someone mentioned previously, I have this internal battle because I can walk and feel like certain aids and equipment are for people who can't walk.  This is actually getting me quite emotional. 

    It actually took me awhile to get used to my shower aids.  I cried a lot when occupational health redid my bathroom so it could be more accessible for me. It was like a constant reminder of my disability and I tried to cover all the aids so people wouldn't see it when they came to my home. Now I love it so maybe over time I will get to a point where I can use other aids, and feel okay about it.  Reading this thread has actually helped but it is really hard.
  • marmalade
    marmalade Member Posts: 69 Pioneering
    Hi @Tilly57
    I totally understand your dillema it can take a while to adjust emotionally and mentally to the fact the we have a disability.  I used to be uncomfortable with the stares but now I do not give it a second thought.  This is my life and I am going to live it and keep myself as well as i can and I do not need the validation of others.  But I have been ill since 1995 and it took a long time to get there.
    My physiotherapist told me that I should use at least one if my crutches all the time because people need to see something physical to inderstand that you have a disability.  If they see you one day withoutband then another day with it they cannot understand it or appreciate how difficult it is for you.  A constant reminder allows them to register that you are actually unwell.  So I tried it and guess, what she was right.  Even friends and family respond to the cue.  So it's something to think about. 
    I hope you find the balance that suits you.  Can I ask what you had done to your bathroom please.
  • Tilly57
    Tilly57 Member Posts: 8 Connected
    Hi @marmalade - thank you for responding to me.  I decided to start wearing a badge a few weeks ago, in the hopes that people would just note that something is up - it says "Please offer me a seat". I got it from tfl as I would feel bad sitting in the priority seating area but now I feel my badge gives me some justification. I loved what you said..."This is my life and I am going to live it and keep myself as well as i can and I do not need the validation of others". I really need to adapt my mentality and have that approach.

    They put in a shower, handle rail and shower chair board thing. Sorry I don't know the technical name but it allows me to sit and have a shower.  It has helped A LOT


  • marmalade
    marmalade Member Posts: 69 Pioneering
    Hi @Tilly57
    That badge sounds like a great idea and it is a start to acknowledging your disability.  Good for you.  I might try and get my hands on one of those myself.  I  received a chair hoist for my bath.  I also received a perching stool that allows me to sit whilst in the kitchen preparing food and it makes such a difference.  I purchased  smart crutches and they help massively as normal crutches can be painful, especially with fibromyalgia which sounds like you have too.  

    You can buy car stiggers too that highlight your disability which is handy if you use disabled parking bays but no visual aids.

    I put two stickers on my wheelchair.  One says disability does not mean inability and the other says my legs don't work but my mind is fine.  Sometimes people need reminding ?
  • Tilly57
    Tilly57 Member Posts: 8 Connected
    Hi @marmalade, thank you. I can't use crutches due to a shoulder injury plus I get crazy pains in my arms but I love the sticker idea. Where did you get them from? I always say to myself disability does not mean inability so would love some stickers to put around my office. 
  • marmalade
    marmalade Member Posts: 69 Pioneering
    Hi @Tilly57
    The crutches prevent all of that as you use your forearm but i hear what your saying it can be difficult.  The badges can be found on eBay and Amazon.  I got mine from eBay they were pretty cheap too.  I think the fibromyalgia one was amazon though. 
  • ncps
    ncps Member Posts: 30 Courageous
    I thought I would post this link for those of you who need but cant afford equipment :)  https://disabilityequipmentservice.co.uk/

    Lou

    Northants chronic pain support

    www.ncpsuk.com


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