I went to the drs yesterday and, as usual, the experience of trying to get around outside the house has left me feeling really depressed and a bit hopeless really. In the house I am ok, shuffling about and leaning on walls etc for support; I struggle a lot with the stairs and I’m waiting for a ground floor extension. But outside the house my walking just plummets. I use a scooter when I can but it’s not always practical, like getting from the car to the doctor’s room, and I use my stick. I feel so embarrassed at how slow I walk and what other people are thinking, and I dread seeing anyone I know. I must look like a shuffling old lady and I’m only 40.
I think that the problem is that in the house I slide my feet along rather than lift them, but on bumpy ground and uneven floors (as the drs has, along with rucked up carpet!) I can’t do this and so I struggle. I feel so vulnerable and as if I will fall over at any minute. I did fall over outside the supermarket recently and I felt so embarrassed. I hate the pathetic person this disease is turning me into. I am not too bad on a shiny flat shop floor when I am leaning on a trolley, but I feel so unstable and ‘adrift’ when I have to let go of it.
I know I’m lucky in many ways, and many people are much worse off. I just wanted to share how I feel and ask how others cope with this, if they’ve experienced the same. Thanks.
i can use furniture in house. outside i use 4 wheeled walker and stuggle similar to you. however, inside i dont give 2 hoots what others think of what i am doing! some folk are brill,helpful etc,am grateful for that and tell them. those that glare and judge me cos of how i look/manage have a bigger problem that me! in my head i am still the same person-its this carcass thats failing me-thats beyond my control-but i am in control of MY thoughts and feelings,not anyone elses. if i could then would make everyone happy!
just a different view,if you can use it then please do so. if u think i have got it all wrong-then ignore my words.
Hi Perky, it is hard isn’t it. I also have terrible problems walking outside and usually use my scooter when I can. I try to always take a little walk up and down my street (a short side-street) just to keep my legs going for as long as possible. I use a stick and sort of hobble along.
I live in sheltered housing (at 59 I’m the youngest here) and everyone here feels just as embarrassed about mobility problems… including my neighbour who is 98 next week. So it really is not an age thing. Old people who shuffle and fall are just as embarrassed because of course it only seems 5 minutes ago they were young and able-bodied.
I think really we have to change our attitudes and get tough about it. A kind of ‘get tough and proud’ attitude.
I always find Francesca Martinez a great role model. She has Cerabral Palsy… but she just describes herself as ‘wobbly’… and is a stand-up comedian, actress and political advocate for disable people. Look her up on You Tube. She’s fantastic and can help you to look at disability in a different way.
Have you had physio? It can really help with balance and walking. Your GP can refer you.
I’m not saying that I have learnt to live with it. It is VERY hard. I’m working on the ‘get tough and proud’ attitude… but not always successfully!
Hi It is really annoying isn’t it. I’m 31 and have a four year old and a few steps with my walking stick is the maximum I can now do. It’s wheel chair all the way for me now outside And yes the looks are annoying and also the way some people talk to me as well can be really frustrating at times!! Tim
Well, l have been struggling more and more lately - my left side - the MS bit - is just the same - useless and dragging - but my right side - which was my ‘‘good side’’ is now more of a problem. l have had some terrible falls recently - banging my elbow and knee/hip. l have been told that l need hip/knee replacement - but l am [at 65] too young. l have been in so much pain - and l can’t straighten my leg out so have been hobbling about all bent over. So l decided to make an appointment with an osteopath that l used to go to. This morning l went - struggled to get out of the car and walk up his drive - took a massive effort to climb the front door step. Within minutes he had spotted which hip and knee were causing me problems and with a couple of movements l could feel my hip back in action - then my knee. Now l can straighten the knee - and bend it right up - balance on one leg - l am overjoyed!!! Why l didn’t think to go to him before all this. My daughter has often gone to him and is always sending her friends to him when they have joint problems.
With MS - well in my case - my left foot is ‘dropped’ and l can not lift my knee - so my right side has had to work twice as hard for the last 30yrs. So abnormal wear and tear has damaged my ‘good’ side. My osteopath is now in his mid 70’s - a lovely man who does not want to make money out of peoples pain. He charges £25 - and has done for years.
We use a ‘horse osteopath’ for our horses and ponies. - And recently had one who was looking very miserable and did not want to be ridden - so we called out the osteo - and had him treated. lt was miraculous the difference. He is rejuvenated now he is not in any pain. Now - if l called out the vet he would have just given him painkillers. Well l am looking forward to going to bed tonight and hopefully have a night without pain keeping me awake.
Hi I’m very much the same as Monya and having never recovered from a major relapse I had over 10 years ago don’t think I’ll ever be the same. even walking on certain surfaces eg tiled floors seems to draw my legs making them heavier and harder to walk, not helped if it’s cold too, that just makes them even number, I was recently accused of been drunk in ASDA I’d only gone up and down the fridge section and couldn’t make my legs go and kept losing my balance - hence them thinking I was drunk As for physio no good for me was having too many falls after it Sue xx
My story is a bit like Polls – an adventure with the Ws
After months of physio I was able to walk 20M or so with my walker but it was VERY limiting. Even my GPs surgery which is very modern and well set out was a nightmare of effort and fear.
I now have an electric wheelchair and life has opened up no end. After getting a WAV delivered on Friday I was able to go out in the chair with my daughter for the first time yesterday. I warned her that people fall into 2 camps. The Delightful and The Dickheads. The Delightful people talk to me normally and move well out of the way to let me past. The Dickheads seem to think that taking a baby step of 2 inches to the side will do and then tut when I very politely ask for more space. I used to be bothered but now I don’t give a damn – I have a perfect right to get round Asda so get out of my way or say goodbye to your toes.
I have lots of confidence in my chair and I don’t feel like a shuffling old lady – in fact I go quite quickly. No falls and no fatigue.
Not suggesting that you should jump into a wheelchair - a walker will give you lots of stability but you will still be slow!
Thankyou all for your kind replies. Such lovely people on here.
Hmm I will think about a walker but the idea terrifies me, I realise this is ridiculous. I was horrified at the thought of a scooter at first and now I love it and couldn’t imagine being without it!
That’s interesting Moyna what you say about tensing up - I think you may have something there. I find I’m worse in stressful situations, so this might explain it! As I hardly go out now maybe I’m just finding be outside the home stressful in general.
Hi I think a lot of people can relate to your feelings. I certainly went through all these emotions and tried to keep walking for as long as I could. One thing I learnt was not to put other people’s thoughts and attitudes before my own and my own needs to be able to get around and paticipate in life. I tried zimmer frames and was initially embarrased but it did the job it was suposed to do for a while and kept me walking. Then I progressed to mobility scooters but found them to cumbersome and once I reached somewhere I could always get off to walk to get what I wanted (I couldn’t leave it outside a shop and walk in as I’d fall over doing that). I now have an electric wheelchair and whiz about. I no longer care what other people are thinking because if I did I’d never go out and I’m not ready to stay at home all the time just to ease my embarrassment. I look upon my wheelchair as my legs now and I’m free. I hope you start to feel easier about your difficulty in walking soon and start to use aids that will give you your life back. I know this is not easy but this disease is not easy but we have to make the best of what we have for as long as we can.
Go girl…you and the rest of us have every right to get out and about. But watch those toes. Most folk are nice and make way and say sorry for being in our way. I always say thankyou and tell them I`ll get em next time. it usually draws a laff!
Those who dont laff are Richards indeed! we are lucky we dont live with them.