Hi Guys, I’ve not posted for a while. Been a hectic few months 
how are you all? A conversation with my cousin has got me thinking and I’d really like your advice please. My mobility is getting worse due to a combination of symptoms and I’m now hating going anywhere. Walking short distances is fine but what i call ‘proper walking’ isn’t. If i do anything lengthy I’m fatigued, in pain and fed up. I went to the Trafford centre with my cousin and her kids for the day last week and it was a nightmare. I was in so much pain all over that i couldn’t concentrate and i actually dropped my phone and didn’t realise. It was only when i sat down to rest my legs i noticed it was missing (thankfully someone had handed it in). I felt so angry and sad. I don’t go out very much anymore as i like to conserve my energy but i realise that is not living. My cousin suggested i get a wheelchair… even if i only use it initially for longer or more challenging events. I am not too sure as i think i would feel weird having a wheelchair when i can technically walk. But it got me thinking when do we know we need a chair? Please could those who use a chair share their experiences of how and when they knew they needed one? I realise the benefits to a chair. I’d go out a lot more but i just feel it’s a bit dramatic. I’m currently waiting for a referral to pain clinic for advice as the dr wants to try me on fentanyl patches. Will that help instead of a chair? Should i give them a go first and then walk with the patches? I realise they won’t help the fatigue but im just so confused. Please help. Kind regards, Natalie Kinsey
Hi Natalie,
it is an interesting question. I can still walk with a rollator but this is not a great solution if I want to share time with my wife who walks at regular bi-ped speed. So it is simple for me to swallow pride on occasion so that we can share nice times together. I now have a small scooter so we can also save her poor back from pushing me in a chair. I am not thrilled to need a chair but this compromise brings enough benefits.
if you do get a chair you may well wonder if you should have done so earlier. However you proceed I wish you all the best. Mick
Hello, I now use a wheelchair and a scooter, at first I was reluctant but when I did it gave me back my freedom I get out at least once a week. I got my wheelchair from the NHS wheelchair service my daughter can push me. It’s a self propelling one too but I cannot do it because my muscles are so weak. I have been referred for a powerchair. The MS society have grants to help buy mobilty equipment. Maybe you should try some out to see what’s best for you, The small scooters are good because you can get on the bus. I hope you get something sorted. Lina
Hi Natalie, this is a subject I have experience of and feel quite strongly about.
Of course it is a very important crossroads in a persons life. I was having this conversation with a fellow MSer last week. She told me she was thinking about getting wheels` as she called it, because her neurologist says it is time to go that way.
But it doesnt have to be all or nothing ie wheels or legs. It can be part and part.
Unfortunately my mind was made up for me, due to having daily falls…some were quite spectacular! That along with chronic fatigue, immense difficulty in keeping going and feeling my life was unsustainable this way. Outings were cut short, I stayed in the car instead of joining others to enjoy a trip out. I stayed in bed, without seeing another person, apart from my hubby. I felt getting up would only bring more anxiety and stress.
So I knew I had no choice…get wheels or have a rotten life.
I did try to keep walking when I first got a scooter…then I`d used a manual wheelchair in among…then within 3 years, I became a full time wheelchair user and got a succession of electric wheelchairs.
So Natalie, if my experiences have helped you make a decision or not…I hope I have helped.
Life will be better…it will be safer and more enjoyable. I was able to stand for some years after losing mobility, so I transferred using a patient turner. My physio got it for me.
It has been around 18 years now since I could walk and I have ceiling hoists fitted in my lounge and bedroom. I use a wheeled commode/shower chair and have a wet room.
I do miss being able to walk, run, dance, swim…but still enjoy family, trips out…(accessibility checked beforehand), etc.
If you need to ask anything else, please do.
love Boudsxx
ps…the fentanyl patches might help and push you on a bit longer…hope so chick. x
Hello Natalie.
The wheelchair was a life changer. At first, it was great for long walks but 16 years own, my NHS power chair gives me the independence I’ve craved for. In 2004, it was a big decision to make the move to a manual and in 2016, I bought my first electric folding chair.
Best wishes.
Thank you for the reply. That is the issue I’m facing. I feel like i can’t keep up with everyone and im missing out. I think I’d be too fatigued with a manual so it would be a scooter pr powered chair. I have a feeling if i make the decision i will look back and wonder why i never did it sooner thank you so much for your story. It really helps:)
Hi and thank you for your reply. That is brilliant advice. I think i may go and have a look and see what is out there and get a bit used to the idea. My neurologist said they will refer me for a chair but i ignored it. It wasn’t until my cousin said i shoul consider it that it hit me that she may have a point. I’m just scared of the unknown i think so going and having a look might be a good first step. Thank you 
Thank you so much for the reply. That is how I feel. I no longer feel like i have any independence. I am either have no energy to get going, or i have the energy to get going but I’m in pain amd don’t enjoy what im doing. From the second i keave my house i can’t wait to go home and that is no life Your reply is very helpful thank you
Thank you so much for the reply. That is how I feel. I no longer feel like i have any independence. I am either have no energy to get going, or i have the energy to get going but I’m in pain amd don’t enjoy what im doing. From the second i keave my house i can’t wait to go home and that is no life Your reply is very helpful thank you
Hi,
Read your post with interest. Was in the same situation a few years ago and I decided to get a rollator/wheelchair. It’s a rollator that turns into a wheelchair but you do need someone to push it. It allows me to go for walk with family or friends and get wheeled about when my legs give up.
It’s not for everyone but it suits me . It’s a Rollz motion
Good luck with your decision
Verona
I walk in the flat and i walk a little around the outside of my flat to keep my legs moving, but out i use my scooter to take dog for a walk, and we have a special fold up light weight electric wheelchair to go out. I think its more dangerous to push ourselves because of pride then to use an aid to keep us safe. although even using a wheelchair can have its own perils so one has to be careful with all aids. BUT use one. You can hire one to try it.
start slow see how you get on. but there is no way i could walk around a shop. xxx
Think of a wheelchair the way you would a pair of reading glasses or an umbrella or snow boots. Those are all things that are necessary sometimes and that you’d be foolish to go without if circumstances warrant their use. I’m still at the point of wondering what my neighbors think when they see me hobbling through the yard with my cane and then watch me roaming freely at other times, but I’ve also started using an electric cart when I go shopping. It’s made a world of difference, and I can’t believe I waited so long to start using one!
Whoever wheels or walks, or wheels and walks…more power to you all. The most important thing is safety first.
Keep going folks!
Boudsxx
You know you need it when you keep falling over, when you end up in the gutter for one more embarrassing episode. Whe going to a shopping centre, or exhibition or museum is a propect too awful to contemplate cuz you KNOW you will be exhausted, shattered, in pain for days after. Sounds familiar?? I first got one in 2014, cuz what I could manage with sticks was less and less. In distance and time. At first a manual and my partner or son pushed. But they weren’t there all the time and I got an add on motor. After that I could go further and faster than I had in TEN YEARS. The day my son said “slow down mom”…I laffed like a drain!!! I could keep up with ppl I loved and go places independently. So try hiring one for big days out and see wot a diff, and btw - once I was off my legs, less pain in my ankles and knees
Hi, so I started using a chair about 11yrs ago, have a scooter too, my mind was made up when a physio of mine came to the bunglaow to assess me, lovely lady…anyway she ask me how much me and my husband was getting out, not very much was my answer because my walking wasn’t very good, balance issues and couldn’t go any distance, I was only using a stick back then, anyway she said something to me that changed my mind there and then, she said…Jean you can sit on that sofa watching the world go by out that window, or you can get a chair/scooter and enjoy sometime outdoors with your husband, family and friends, that was enough for me and I’m so glad I did, I prefer my scooter, amkes me feel more independent.
Nice one Jean!
Boudsx