Hi all,i was just wondering how and when did some of you end up in a wheelchair ?
Iv’e been off work since the end of March with supposid sciatica,which has’nt been confirmed.I find it increasingly difficult to walk without being in excruciating pain,when at home i seem to use door frames and furniture to hold and support myself.
After having a lumber puncture and an MRI scan nothing has been diagnosed and i struggle on,being referred to a back specialist and signed off for another two months,it seems never ending.I was at work all week then woke up on the saturday and couldn’t walk or stand straight.
Sorry this is all a bit muddled,must be my MS head,feel a bit fuzzy tonight but i hope you get the gist of it all.
Thanks Mel x.
I think you will find that us with ms dont like the phrase ‘end up in a wheelchair’ i know that i chose when to start using one,it was when i had struggled on for years,not being able to walk more than a few yards,due to how ill i felt,when i did,so i made the decision to get one to use when i needed it,i hated using it so i got a mobility scooter instead.
Hi Mel, Have to agree with mrsJ… I don’t think any of us would use that term.
I suppose I used to think that there came a day where you couldn’t walk anymore and from that day forward you used a wheelchair.
But it’s not like that at all. As mobility worsens you start to work out ways to make things easier for yourself. Maybe to walk to the corner shop you use a walking stick but going further afield you need wheels… then a wheelchair would be handy.
Personally I use a mobility scooter for local trips and if I’m going on a hospital appointment or somewhere by car I’ll take the wheelchair.
I think what I don’t like about the term ‘end up in a wheelchair’ (although believe me I have probably used the term in the past!) is that it makes it feel like an awful day, like a ‘passive’ act, like a day comes along when you ‘give in’ and are no longer in control.
But all mobility aids, from walking stick to crutches, to mob scooter, to wheelchair, are a way of us staying IN control. Staying independent. Staying as people who are still part of the world.
So the idea that one day you are mobile and the next you are in a wheelchair just isn’t what happens. Wheelchairs are aids, which along with other mobility aids, are used to get around.
Sorry to hear you are having such a tough time. If standing and walking is painful then a wheelchair might be the answer. But that doesn’t mean you’ll have to use it for life or even every day.
Although MS is different for everyone, I don’t think what you describe with your legs sounds typical of MS. I hope they find out what’s going on soon & you get some relief.
Thats just what i wanted to say Pat,but dont have the energy to find the words these days.you seem to be able to put into words what i want to say.
Hope you get some answers Mel…its awful being in limbo.
I made the decision a long time ago, my children were small and still wanted me to go on days out to the seaside etc. Trouble was walking for me was so difficult and painful to manage, and I desperately wanted (and needed) to be able to partake in family ooutings, so a wheelchair was the answer.
I looked on it (and still do) as a tool to keeping my independence, not that I have “given in” to MS, and now my power chair is one of my best friends.
Hope this helps, take care.
I have a wheelchair and a scooter plus a trailer to take the scooter on the back of the car. I can remember when each was bought but it wasn’t a matter of resignation and submission. As the others have said, it’s control. I’m sorry to hear about you discomfort. My father suffered from sciatica for years. He didn’t really rest it or anything so it never went away properly until he stopped working.
Best wishes Steve.
Mel I really feel for you. Both my daughter and I suffer from sciatica at times and it is both extremely painful and very debilitating. Unfortunately with sciatica I’ve found the worst thing I can do is sit, so that’s when I go from using a stick to crutches. They help keep me mobile while improving my posture.
When you have pain it changes your gait, which in turn makes your posture worse, which often causes irritation to the sciatic nerve, causing pain. It’s a vicious cycle. Have you seen a physio? They can often give exercises to strengthen your core muscles or acupuncture, which I found very helpful for a while.
I agree with the others that every change we make is usually gradual and I also try to look at every gadget or piece of equipment as an aide to independence though I’ll admit to sometimes looking at things and getting upset because someone my age really shouldn’t require all this stuff and up until a few years ago I classed myself as being healthy, strong and very independent.
Take care and I hope you get the answers and help you need.
Hi,first of all could i apologise for my terminology,i suppose i’m still getting used to not only having ms but to the way one should use certain terms,i didn’t mean to offend.Today has got to be one of the worst days so far,just didn’t want to get up or do anything,could be a bit of depression creeping in.Oh just listen to me,bloody man up and get on with it,i can just hear dad saying,wish he was here.Right thats it decision made,i’m going to start fighting this again and if needs be i will use any aids available to make things easier,positive attitude,that would be a start.I’m waffling again,sorry,hopefully my next post will be a happier one,take care and thank you for being there x.
Best bit of advice I ever had Snoopy… and it was someone’s neuro who said it… ‘The more you fight MS the more it will fight back’.
In other words, when fatigue (or any symptoms) is bad, don’t fight it. It won’t work.
Well I know you’re not diagnosed MS yet, but whatever you’ve got it sounds very debilitating, so would suggest you rest as much as possible and ditch the guilt. It doesn’t help.
Take care and hang on in there,
Mel, I love waffles. Didn’t offend me, but like the ms, everyone’s different. Only been on here a month or so myself…softly softly catchie… if it gets you down that’s cool. It’s allowed. I could quote Rocky here, but you may not be on my spaceship. Coupla weeks ago I had a family pyjamas day, and it occurred to me I hadn’t done that since I was at uni in 95 ! Sod it, it was great ! So if you have a down day - so be it. The next day could be Skittles and space hoppers. Take care, Andy
Hang in there Mel…one day at a time.
Hi, thanks for your replies and tips on how to get through. I was diagnosed in 2013 with PPMS but still trying to get my head around it.
Liking your attitude to MS Andy, Skittles and Space Hoppers sounds good to me and I don’t mind a bit of Rocky
I have learnt not to stress with MS, it only makes my symptoms worse. My youngest daughter of 3 and I generally have a pj day on a Sunday and I love it, what a slob. I recently tried a wheelchair and hated it, it was as though my independence had been taken away, but if that’s the way life’s got to be so be it.
Still mixed up and confused x
So am I, but that’s not always ms related !! Never had wheels, thought about a cane one time… but to your 3 year old (I have a blue one of those) the wheelchair is a chariot. Rides around the house/ down the park. She’ll know nothing else… Have a mardle to Boudica about the wheel spikes…and watch Despicable me mini extras on how to child proof them !!! Sunday’s were made for hot dogs !! Grab some sparklers. Andy
Hi, sorry Mel, I didn’t realise you were diagnosed… it was the mention of lumber puncture that made me think you weren’t.
Have you tried a mobility scooter?
I think think the bugger about a manual wheelchair is you have to be pushed… but I think both mobility scooters and electric wheelchairs are a whole different experience. YOU are driving it and it feels MUCH better!!!
My mobility scooter was the best thing I ever bought!!! Wouldn’t live without it.
same here Pat, i love my scooter.
Madge aka mrsJ
Mel don’t ever feel you’re on your own with the “down days”, we all have them. I’m sure you haven’t offended anyone either… I think people were trying to get you see wheels in a different light. I had the same problem when I started getting all the “enablement equipment” in my home and it just depressed me so much every time I walked into a room to see it there. I felt much too young to need it and wasn’t far enough into my diagnosis to accept any of it. It’s not easy.
I’ve not reached the stage to need wheels yet but must say that my dad who has MND has invested in a scooter and it has given him a new lease on life. He has a manual wheelchair which he detests, having always been very independent but he goes out every day no matter the weather on his scooter. After seeing the pleasure it gives him I have no doubts that when or if the time comes I’ll definitely invest in one. Try hiring one and see what you think.
Thanks to you all,i’ve got toilet aids, bath aids ,sticks, crutches and a wheelchair all standing by,well in the shed.I can’t give in just yet but i think the time is rapidly approaching,progressive is progressing quicker than i expected.The mobility scooter sounds good to me.Pleased you came out Madge aka Mrs j lol .
It’s not giving in Mel… it’s just recognition that you need wheels!
Get that mobility scooter… you won’t regret it. Many places do interest-free credit but you can also get them second-hand on eBay and sometimes they’ve hardly been used. Some disability shops also sell second-hand.
If you get high mobility component of DLA you can use it for mobility scooter on the Motorbility Scheme… but I think if poss it’s best to get one by other means and not lose that DLA money (I’m not sure how it works with PIP).
Also remember you can have the VAT taken off just by signing a form and saying you have MS.
Work out what you want it for… for instance if you want it to get down country lanes, across fields etc you’ll need a big rugged one (the Tramper is great for that), but if you want it to go round shops than a smaller one is fine. Also there’s ones that fold quite easily and go in boot of car.
Lots of towns have a shop where you can hire one… worth doing before you buy so you get a better idea of what you want.
Trust me, once you’re used to it you’ll be amazed at how more independent you feel.
I was only diagnosed in September with Ms but got a water infection in March spent 3 weeks in hospital then 3 weeks in rehab I couldn’t move at first physios had to work on me, I can walk but not far due to pain in my weak leg, I am moving to an adapted house because my mobility got so bad I got my Ms nurses to order me a wheelchair.
im only 35 so didn’t want one but I needed one to help me round the house I do walk but not far due to bladder and balance I’ll use it it for ambulance transport to hospital and around the house, I’ll get a mobility scooter for other things.
im hoping my walking improves it got bad with infection but neurologist said it can take along time so got exercises from Ms nurses and finally neurologist has said PPMS but I knew that a year ago almost.
anyway hope this helps.