Hi everyone, I haven’t been on here for a while as I’m going through a relapse of MS and Lupus and it has really I drained me. Yesterday I saw my MS nurse and she said I am border line wheelchair user. How does one cope, I feel lost and defeated, please advise me. Many thanks Janet X
I’m sorry you’re feeling rubbish, both physically & emotionally. I remember not long after I was diagnosed I freaked out at the idea that one day I might need a wheelchair. I was active, played football, cycled, and didn’t know how I’d cope if I did.
Now, it’s several years later and I use a wheelchair most of time. My personal experience is that, like many things, the fear of it is often worse than the reality. If anything, rather than a defeat it’s opened up a new horizon. I used to struggle with things like going to the kitchen & getting a drink. Now, I can get there quickly & easily. That’s not to say it’s always a barrel of laughs. Many things, be it houses or pubs etc, aren’t wheelchair accessible, and the wheelchair can be pretty awkward at times. But in terms of my general day-day life around the home & at work, it’s mostly made things a easier. I’m helped by the fact that I live in an open plan flat, so getting round is a doddle. Being in a house with stairs & separate rooms will obviously make things harder to navigate though.
I’m not really sure what to say, other than that needing a wheelchair does not mean your life is over or that MS has defeated you. I know that I’ve struggled at first with every new or worsening symptom. But then I come to a place of moving on with my life again.
I hope you feel better soon. And don’t feel bad about having a moan on here as much as you need to.
This MS malarky is rubbish but we have to cope with it the best way we can so if a wheelchair will help then think of it as a way to keep you mobile. Like you I was so worried about having to use a wheelchair but once I got to the stage that it took me forever to walk a few metres and I was falling a minimum of 8 times a day I finally thought this is silly and was assessed for a wheelchair. That was several years ago now and yes it was hard at first and my body image suffered and it was difficult dealing with other peoples perceptions. I had to get an electric wheelchair as my arm strength and fatigue issues meant I couldn’t self propel. But my electric wheelchair has revolutionised my life, and I can get around again. I still work full time and without my wheelchair that would be impossible. Yes it’s difficult getting into some places, but at least I can get into others and I’m still able to get out and about and enjoy life.
It’s not so bad Janet, infact for me its great, it’s just getting use to the idea that’s hard and coping with the change at first. I love my electric wheelchair now which is good as I could’nt get around without it.
But I do feel for you as I remember my resistance to facing the fact that a wheelchair was needed - I wanted the MS to go away and leave me alone - I wanted my life back. But its strange now to think like that as my wheelchair has given me more freedom than I had when I was struggling to walk and shuffle around. I’m a whiz in my wheelchair. I hope once you get use to the idea that it will lead you to more freedom too. One word of advice would be to make sure you try out several wheelchairs before you buy one as it took me a few years to find the best one to meet my needs.
(((((((BIG HUGS)))))) Love Mary
Hi Janet, I whole heatedly agree with Dan and Mary. I was a ‘mountain Goat’ before ms took a hold and turned my life upside down. I fought long and hard against any support. First a Walking stick, then elbow sticks, wheelchair and now I’m waiting for my power chair. I hate with such passion the phrase ‘wheelchair bound’. It is said by people who have no understanding. I see myself now as ‘wheelchair liberated’. I still work full time thanks to my chair and my support worker. I got my life and my independence back. It’s a hard thing to deal with and accept, we all, who use wheelchairs have been through it. We do come out the other side You are braver than you think you are Sara x
Another wheelchair user adding a positive voice.
I struggled for a long time to stay mobile outside the home but it got ridiculous. I could only manage a few meters and I had lots of falls. Frankly the wheelchair was a blessing! For the first time in yonks I could go places by myself and get around with ease. I feel less noticeable in my wheelchair than I did staggering about the place!!
Dan is right – many places are not accessible (I’m always ringing up or checking on Google Street Images) but places were not accessible when I was on my feet either because I couldn’t cope with steps or cobbles (lots of cobbles in my old market town) Accessibility is just one of those things and I don’t rail against it.
Please don’t feel that a wheelchair is the end – it will be your savior
And another here with positive voice.
I too started out with stick, then walker, then scooter… and just last week my lovely brand spanking new wheelchair arrived… curtesy of the NHS.
I can use scooter for local trips and wheelchair when I go further afield by car or taxi.
It is a means of getting about… which means freedom to go places without horrendous struggle & pain.
Last week I went to hospital appointment. Was great. For the first time ever I went for a cup of tea in the cafe. Never done that before because the cafe is along a long corridor… and with walker it was just way too far… might as well have been a 10 miles away!
With wheelchair it was a breeze!
I’m now thinking of all the places I can go … art galleries, museums, and next time I go to the seaside I won’t be stuck on a bench outside the hotel!
I know it’s a hard decision to make… but you’ll get there… and then you’ll see that it opens doors that are otherwise closed.
What chariot did you get Pat? I’ve got my second home visit from wheelchair services next week. Sara
Hi Sara, I got a Breezy by Sunrise Medical. It’s manual. Folding. Wheels pop off for easy car transportation… took a London taxi last week & they just wheel you inside still in chair!
They offered me an electric as soon as I walked in (was a bit shocked as hadn’t realised my walking was that bad… think I’ve been in denial)… but I only want it for when I go out of local area… my trusty mob scooter does around here.
However they did say when I decide I need an electric I just have to give them a call.
Good luck with getting one. Are you after manual or electric?
Thank you Dan, Mary, Sara, Jane and Pat for your positive comments, much needed. I have yet to be accessed but my MS nurse thinks I am ready. To be honest I am fed up with struggling all the time, this relapse has shaken me to the core even though we all know it will happen at some stage. I have now given up using the stick and indoors I’m using my rollator and find it so much better as my balance is kuput. Thank you all once again. Janet X
Good luck with getting one. Are you after manual or electric?
Hi Pat I currently have an IGlide, not many people have even heard of them! It’s similar to the emotion. It’s power assisted but self propelled. My arms have had it too now so I’m going for a power chair. Wheelchair services have in mind a Quickie Rumba or Salsa. I have my eye on the Salsa, it looks sooo cool!
Enjoy the rest of the weekend
I’m after a power chair, my arms have had enough of pushing, even with power assist. Driving with hand controls is hard work too.
Wheelchair services think either the Quickie Rumba or Salsa. I want the Salsa, that’s one cool looking/moving chair!!
Enjoy the rest of the weekend,
I don’t think any thing can prepare you for what’s happening, I can’t think what to say. Take care I don’t want to prattle on thinking of you M x
Is there different criteria for getting power chairs through the NHS in different parts of the country?
Obviously I don’t know how good or bad anyone’s walking is but in my area we can only get powerchairs if we need them all day everyday for inside the house as well as outside ie if you can’t walk at all.
I was given my manual chair within about 2 weeks of diagnosis (PPMS). I went to wheelchair services and was given my chair immediately. There wasn’t any discussion about different types, it was just the standard one they had in stock.
Just interested to know if it’s part of the postcode lottery.
Thanks to you all Janet x
Hi Sarah, I suppose there must be. I made it very clear that I walk inside & they actually tried to talk me into a powerchair. In the end they said as soon as I changed my mind & wanted a powerchair I only had to call them.
But I do know other wheelchair users in same area (Haringey London) who were not offered powerchair. So I really don’t know what the system is… but yes sounds like possible postcode lottery… though the physio did say they offer powerchair for PPMS because you will need it eventually (which in fact is not true).
Very enlightening reading all the positives about powerchairs I too am in line for the sunrise Salsa, I’m kinda dreading it but reading thru the posts I’m now thinking of the liberation! Can wait to take my springer for a walk!!
ive been using stick/crutches/chair for over 10 years, diagnosed with RA, broke foot, both wrist told OA, family all have AI. NHS chair I was given couldnt use as was too heavy, bought a Quickie (many giggles) with detachable power pack. Best of both worlds