Nothing wrong in using a wheelchair or scooter, it is a tool to ENABLE. It will let you partake in family occasion and annoy those who wish you were stuck indoors, it will open up opportunities for you. They are a tool the same as crutches or walking sticks do not fear them embrace them.
Don
Mel,
Thanks for the apology, but for me and I am sure for others it wasn’t needed. We all struggle with termiology. What offends one doesn’t offend another and you can’t say the right thing for everyone. I for one don’t like the term “suffers with MS”. Makes me sound like I am having a terrible life and I am not!. I am living my life the very best I can.
Regarding the scooters, wheelchairs etc. I am at the same stage perhaps. I can’t walk far and I now need help when I go out, more than a stick. I have a wheelchair but I will be looking at scooters I think.
You must look at all these things as your friends, not your enemy. Yes of course we don’t want to have to use them. There are lots of things in life we don’t want, but we have them. Yes of course we feel too young (I am certainly, don’t know about you lot!!!). But if we don’t use them, what is the alternative? Stay indoors getting “cabin fever” feeling worse and worse about life, ourselves and our illness? Cos, as sure as eggs is eggs, that is what will happen.
We all hear of other people who “never give in” who “just keep going”. Well, hey. For their information, sometimes we can’t “just keep going” (that is another term that annoys me. As if we have given in). I digress.
Our is such a peculiar, mercurial disease. I read yesterday one doctor who said it is the most difficult disease to try and manage. Every one is different, every day can be different for some of us.
You don’t need to fight this disease. You need to accept it, then live your life as best you can. As someone else said, their Neuro person said if you fight it, the disease fights back. That sure is true. It will never get the better of me, but I am not “fighting it” it takes too much energy. I accept it, it is there, but I am here too. I may not be in charge of what happens to my body, but I am in charge of “ME”. I hope that I am making some sense to you?
I sound very strong and brave. I am not. I have my down times, getting upset for all sorts of reasons, some silly, some not. But then I get back on track and here I am, spouting off!
Please, please Mel. See these changes as needed. I don’t know if you wear glasses? I do, but only for reading. So I don’t wear them all the time, I don’t need them all the time. Use your stick, wheelchair, scooter with the same frame of mind.
When our children use pushchairs, they get out of them and walk sometimes. We don’t say to them, you don’t need the pushchair now, you can’t use it! They use them when they are tired etc. Same with us.
Anyway, I will stop waffling ow! I hope I have got my point across.
I wish you the very best with your future decisions. Life may not be how we expected it, but what is? I wanted to be blonde, busty and slim …
Night,
Anne
x
My word,what a post Anne,i seem to be having a major downer at the moment but after reading that it brings things more into perspective, and the saying it never rains it pours ect ect springs to mind and i wanted to be a fit, healthy, Adonis we can’t have it always,in fact i’ve had a pretty decent life up until now,got to be thankful for some things.Tommorows another day lets see if it can be a better one for us all .
Mel x
I wanted to be a fish
Great post Anne!
Pat xx
The wheelchair moment for me was much the same as the decisions to use all the assistance I have at my disposal.
When it became apparent that I was a liability wobbling around with poor balance I opted to use a stick as it gave me support and control.
When the stick no longer kept me on the straight and narrow it seemed only logical to upgrade to crutches.
When my mobility problems manifested as more than just balance issues and I needed to stop and rest the rollator (aka the wheelie-walker) was a suitable answer to my problems.
Somewhere in amongst all this it was obvious that there were trips and journeys which needed more assistance and would best be accomplished with no walking on my part. I embraced the wheelchair.
After I was first diagnosed MS didn’t bother me and I didn’t bother it. When I began to have mobility issues I was initially very reluctant to use any aids. A couple of falls decided me that I was a danger to both myself and others - enter the walking stick. Having taken the first hurdle I then resolved to embrace and be thankful for any assistance I could get that would keep me on my feet and getting about.
So agree with you TheMrsNatG!
It’s just logical that the aids are there for us to use… so use them. I’m just glad they’re available. I’m sure there are places in the world where wishing for a wheelchair is like wishing for a car… impossible to get.
Not sure I’ve seen you on here before, so if not, welcome. Always great to have new members of the gang!
Pat xx
Yes, I would like to add my welcome too.
Great bunch on here.
Anne
x
Welcome from me also MrsNatG, lovely friendly bunch of folks here, and I wholeheartedly agree, embrace all aids when they are needed, they are all just tools to make our lives easier.
Look forward to seeing you on the forum again.
Pam x
Thank you and welcome,didn’t think this post would have as much response,it’s made me think about all sorts of options open to me,muchas gracias to all my new family on here,stay as well as possible
Mel x.
I totally agree with everyone who has talked about wheelchairs and all the other aids as things to be celebrated as enabling. They are there to make your life easier. I’ve mentioned before on here about going to the big NAIDEX Exhibition every year at the NEC; my wife and I go round it in wonderment at the things on show, the inventiveness of all the people involved in devising, designing and improving disability aids, and most of all the kindness and caring of the folks on the stands. Ok, so they are in business, and are out to sell things, but we find that they’ll always direct you to other manufacturers if they don’t have exactly what you need.
I go round the show with eyes like saucers!
as for my wheelchair, I first got one when I could still lurch around with sticks or a frame, but couldn’t manage any distance. This was several years before my PPMS diagnosis. I now have two chairs, one upstairs and one for downstairs and going out. Cheaper than moving to a bungalow ( I do the stairs on a stairlift).
I’m severely tempted by the idea of a power chair though!
Kev
Just got diagnosed with primary progressive ms and feel so alone its very worrying as my uncle passed away at 44 who had it ,im 36 and quite worried really 
Thanks all for the welcome!
I’d rather forgotten the forum was here tbh used to be quite a regular quite a few years ago.
It’s nice to be back
Nat
welcome Darrenlb,
sorry to hear of your diagnosis,please try to think that your ms will not be the same as your uncles,everyones ms is different and unique to themselves,you will be able to get some good advice on here,theres some very nice friendly people here who will do there best to try and help and support you.
J x
Hi Darren, I can only agree with Mrs J… MS is different for everyone. Your MS will not be like your uncle’s. So try and put that out of your mind if you can.
We are all here to support you and hope you come on here often. It’s a great place for advice and support… but also for friendship! We are all in the same boat and it really helps a lot to have contact with others going through the same thing.
Try to take the ‘one day at a time’ approach.
Have you heard of mindfulness? It’s a way of bringing yourself back to the present moment. So when you’re having negative thoughts you can come back to ‘now’ and let go of those thoughts.
There’s loads of info about it on the internet… just google ‘mindfulness’ and also some great books and CD’s about it on Amazon and eBay.
Hope this helps and hope we see you on here again soon,
Pat xx
I have to second Pat’s praise of Mindfulness
I used to worry about everything (I honestly mean everything), I used to get life get to me (especially some of the MS bits) and the knock on was that I was stressed and had trouble sleeping.
I was introduced to Mindfulness, and after a few months of practise I was able to transform my life view.
I find it relatively easy to overcome lots of negative mindsets - and some of mindfulness is just quite fun
Nat
Hi Darren
Welcome from me as well, I totally agree with the others, in that MS is an individual illness and effects us differently, so please don’t stress worrying, it only makes me symptoms worse.
There are a lovely bunch of friendly folk on here, with heaps of experience between us, so please feel free to ask any questions, as I am sure someone will have an answer for you.
Take one day at a time Darren, take care.
Pam x
Hi from me too, everyone has a better way of showing support than I do so I’ll just ditto everyone’s response.
Keep smiling
Jan x
Hi Nat, it’s nice to have people return to the forum, so welcome back.
Welcome Darren. It’s not unusual to feel very alone after diagnosis. It’s a difficult illness to get your head around with it being invisible. The fact that it seems to hit so many different parts of the body simultaneously doesn’t help either. As the others have said, please don’t compare your illness to anyone else’s as it does affect each of us individually and it’s not known to be an illness that causes us to die early. There will be people who disprove this but from all I’ve read, they usually die from something else, not ms.
The people here on the forum were a huge help to me after diagnosis. They’re very friendly, supportive and knowledgeable, and as they have personal experience of living with the illness they have ideas and tips you’ll not find in any text book. They pulled me up a few times when I hit rock bottom, so don’t be afraid to ask for help or advice at any time.
Take care
Cath x
Welcome back Nat and welcome Darren,
I agree with all the great advise you’ve been given!
Id had MS for many years before I plucked up the courage to join this forum and it’s been a lifesaver.
it makes a world of difference to have friends on here that really do understand.
As everyone says we are all different. If it helps ease your worries a little I am now 63 and have had MS since I was 14.
Outside my home I do use a wheelchair but inside I can still get around albeit extremely slowly!
Pplease come back and start a new thread if there are any worries in particular that you want to talk over…between us all we have a wealth of the experience.
take care of yourself,
Nina x