CFS/ME and mobility (New member)

[HPErebus]

Hi there, I'm new here, I was diagnosed with CFS about a week ago, after being diagnosed with Post-Viral Fatigue Syndrome for about 6 months following a debilitating viral infection.

I've been wondering; but hesitant to ask anyone, if a wheelchair can be used to help me with my mobility? I struggle to walk a few paces without fatigue kicking in; sometimes I can even be sitting doing nothing and it will kick in. Is it worth going to my GP about this? Because I struggle a lot.

I also feel like I'd be embarrassed in a wheelchair, is there a stigma in the general public about wheelchair users?

Thanks in advance, hope to hear back soon.

- Ronan J.

[Bevvy]

Welcome. You don't need to see gp for a wheelchair. Just go to a mobility shop and purchase from there. You can even get them from Amazon!

However I query how you would use it? Certainly I couldn't push myself in mine. Is only occasionally useful when I have a friend push me.

What is far more useful to me is my mobility scooter. I can go where I want, when I want. Even have a hoist for it in my car so comes out with me.

They are not cheap but I get PIP and this is what the money is for.

Hope you find what would be helpful to you.

[Caroljm28]

Hi, my husband who is disabled has obtained a manual wheelchair via our medical centre physio and the Council's occupational health department, they do an assessment by phone and may send someone out to see you but shouldn't have any problems. As far as stigma goes I don't think so, though as previous reply you will not be able to manoeuvre yourself, certainly at my worst CFS/ME that would have been impossible. I would also say that in my experience you should do as much physically as you possibly can within reason and taking great care, but keep yourself mobile as much as possible.

[tobby1428]

i am sorry for all your problems, however do not rely on the dwp for help,they employ cretins whose sole job is to deprive you of benefits that should help you with your mobility problems.ask your doctor for a referall to a physiotherapist,they should be able to help you,they normally know all the relevant people that you should contact! good luck,good health and god bless!

[HPErebus in reply to tobby1428]

Thank you so much! I know what you mean about the DWP, I'm on benefits and they are so tough to work with; I've been lucky so far to not have been cut. I hope you get well soon, best wishes! x

[Antony_M]

Hi Ronan,

I have a manual wheelchair which is light weight and folds to go in the boot of my car. It was around £200 though it's built for 'occasional use' and can't be customised to body shape.

I used it to get back to work as my legs were very weak and my balance nearly non existent, I had a hill to tackle to get to front door of where I work. I have an unexplained disparity between the effect of exercise on my legs and the effect on my arms which are stronger and recover better.

The wheelchair is useful for day trips where I can be pushed if the distance is further than I can walk or where the payback would be unmanageable.

However, be warned that you can be swapping one problem for another as after a year of use I had a problem with my shoulder which took a long time to resolve and recovery​ from any injury with CFS is difficult.

I also have a walking frame with 4 wheels and mainly use that to get around and take the view that if I'm too weak to use the frame, I shouldn't be soldiering-on self propelling in the chair. I now have a people carrier and​ take both pieces of equipment out and make the decision on which to use when I get where I'm going.

Being seen as physically disabled is eye-opening; I've been laughed at, huffed and tutted at, ignored, regarded with disgust and had people be overly familiar or act as if I have learning difficulties. Some people are genuinely nice and helpful but you need to be thick skinned for those who are not.

Adaptations to my working pattern and location have had the biggest impact on my walking ability and I use the chair less and less, though I can still go further and faster in the chair than I can on foot.

[HPErebus in reply to Antony_M]

Thanks! Very insightful! <3

[Antony_M in reply to HPErebus]

I hope I can help, any other questions, just feel free to ask.

I first used a manual wheelchair on holiday when we hired one, it was really touch and go as to whether I'd be able to go.

[HPErebus in reply to Antony_M]

Thank you sir x

[kymkat]

I hated using a wheelchair,it was my pride,I wasnt ready,now I think of all the things I can do with it....no contest,never mind what others think.

[Lisaja76]

Hi Ronan. I have also only this year been diagnosed after the gradual decline into the ME symptoms over several years. My problems with mobility sound exactly like yours. Sometimes my 'loss of strength' as I call it, happens very suddenly at which point it is hard to move my body, especially my feet. I purchased a mobility scooter having tried one out just before Christmas. Most people I have found; are really pleased with my decision and are glad to see the boost it is giving me. The ability to take myself off out on my scooter is such a positive thing amongst the misery. I highly recommend it. I can go out for the day with a friend, take my God-daughter out with my family. This would otherwise not be possible. It opens up a whole new world. My only caution is that I find I cannot do this too many times in a week. sometimes I get payback from it. Despite this; the positives far outweigh the negatives. Please do consider this route! All the best

[myhealthneeds]

I use a wheel chair sometimes but I have a Motability car with hand controls and usually park outside the place where I am going, so don't walk more than a few steps. I am in a lot of pain standing or walking indoors, like in a shop. There are no chairs in shops these days and when I do venture into a shop I am looking for a chair to collapse into! When on holiday In Ireland this year I used the wheelchair every day as we flew to Ireland and then went by coach while over there. They were brilliant at the airport and took us out to the plane (couldn't believe that it was a Stobart twin prop; It looked like a toy plane and I was looking for the big key to wind it up!!). They put us on the plane first before the other 68 passengers arrived (still can't work out how such a tiny plane could hold 70 passenger, plus two pilots and two attendants). I propelled myself quite a bit but that really exhausted me, even though I didn't go far like that. I'd intended using it differently: walking with it and then sitting down for a rest but once I was in it people expected me to stay in it. That caused a problem. My husband has a bad shoulder and couldn't push me far without a lot of pain. I spent every evening lying on the bed in the hotel resting and dozing, trying to get over the day. Actually, because I was in a wheelchair they suddenly changed the room we were in and gave us a huge room with sea views and a walk-in shower. It was lovely. But then, since I got back from holiday, I haven't really recovered and now with this hot weather I am really suffering so much pain and exhaustion. My body just can't adjust to the heat even though I love the sunshine and warmth. I had intended getting a four wheel walker with a seat that folds to keep in the boot or to take on holiday with me but they are all so big, even the smallest ones! They are difficult to pick up and place in the boot and really don't fit easily into the boot of a car (and my car is quite large). I was disappointed by this. How are you getting on now?

[Swanbox]

I can walk but tend to collapse, usually quite suddenly. I have a cheap treadmill and heart rate monitor I use to take a precisely controlled walk each day. It’s been a couple of months and I haven’t collapsed since.

I use a motorised wheelchair outside the house where it’s harder to control how much effort I expend on walking, and where I don’t want to be constantly checking a heart rate monitor. It’s been absolutely amazing. No hassle from anyone, even though it must be quite confusing to see someone get out of a chair and push it on to a train. People come over to help. It’s great to leave the house knowing I’ll be able to get back safely- I had stopped going to the shops or cafe even on good days because it was too risky. It means I can finally follow my young son out in to the world. Can’t recommend it enough.

[Allaina]

Hi I use a mobily scooter I'm 28 and al most had my scooter a year. It's changed my life I could see my mobility decline and the fuitgue making it harder for me to leave the house. I still have to be careful on how long I've been out but it's better than nothing.

It used to get to me how I was 27/28 and a mobily scooter but now I don't care as much.