Forum

Time to give up ?

I am so fed up with all the issues of my health…lack of good health that I am tempted to give in get a wheelchair and become “disabled”

Please do not be offended by what I am saying, I respect people who need to use a wheelchair etc I do not wish to be offensive or anything like that.

Sorry today is a very tired muddled person trying to type this.

Every inch of my body hurts, most bits have also pins and needles sitting is agone walking is too.

So many people have more to cope with than me I know this but I feel unabe to struggle any longer.

No one see.s or can see how I feel…lots of times people say how well I look when I feel anything but well…evem my OH does not remember I cannot do some things…gets mad at me if I say I can.t stand any longer when he is wanting me to etc.

Sorry I am not making this very clear…I need some help … pleeeez

I know how you are feeling. I’ve been offered Fampyra and had to evaluate just how crappy my body is as regards walking and standing.
I’m going to hang on until July, when the ‘does it work’ trial starts.

If it doesn’t work, then I’m going to try all sorts of things and I won’t use a chair until the other things (diet, exercise, etc) have or haven’t worked.

It sucks. My OH gets mad at me too. I feel very emotional about the whole thing.

I’d just like to be able to stand still, in one place without cramps and spasms.

I’d like to be able to walk at a normal pace and not end up with worse nerve pain at the end of a day.

hugs,

anon

Hi

I can walk a little but I do not have the freedom to move around as I wish with walking.

I then found my freedom, freedom to move around shopping centres (even though i’m a fella), freedom to go out in the country with my wife, freedom to go to concerts & sporting events, freedom to drink alcohol and not fall over.

I found the freedom by using a wheelchair…

My wife loved me using it. I was like a giant shopping basket with everything on my knee.

I loved it… I didn’t get as tired, wobbly or in as much pain as walking / stumbling.

Using a chair wasn’t giving up for me. It was getting the freedom to be myself or go where I want when I want without the fear of not getting back to my car / home.

My chair makes me ‘abled’ not ‘disabled’… I am not offended by your comments. I felt the same but I now have my wheels…

all the best

Neil

I have ppms and have gone through the same things, people quite often thought I had a drink problem. I am now permanently in a wheelchair. I agree with Neil the times when you just cant bear it use a chair however I am a great believer in dont use it you lose it. The people close to me I explained things, after a time when I felt I had to explain myself to strangers I though whyshould I and stopped. Be kind to yourself.

Why you see using a w/c as giving in is beyond me… all a w/c or mobility scooter does,is give you the ability to get about more,it gives you more freedom,thats all,its certainly not giving as you put it,its making the most of being able to live life a little better,i have had Ms a long ,long time,and it was peoples attitudes,my family included that stopped me from using these aids,in the end i thought to myself,does it really matter what other people think…the answer was no it doesnt,if you feel a w/c will make life easier,then use one.

Using a wheelchair/ scooter and seeing it as a positive step forward is a very hard concept to grasp,I totally agree with Neil, but It can take time to get your head around it- give yourself time. I am just at the transition to scooter so that I can keep up with my family and do the things I love,and not spend days in pain getting over it. I have spent 6 months trying to get my head around it, finally I feel ready to take on the challenge of other peoples opinions and my own thoughts/worries. Im off to pick up my dream offroad scooter at the weekend, it wll help me get out in the forestry, up on to the moor and all the places I long to go, the most difficult thing for me is going out on it in my local community, so I have an army of friends that I intend to use to walk out with me and gie me a bit of strength and confidence on those 1st few outings. The dogs going to be over the moon , good luck love.

BC x

I’m with Neil on this one. I didn’t want to use a wheelchair (or a mobility scooter) but using one means I go places and do things that I just couldn’t before. My life is better now that I have admitted to myself that I need help.

No-one chooses to have MS - we’re all just stuck with it. But (sorry bit of home-spun wisdom coming up) in life, it’s not the hand you’re dealt that matters, but the way you play it. It’s better to ask for help if you need it - most people like to help others (partly because it makes them feel good about themselves, but partly because most people are kind people). It’s better to use the aids you need - we’re all lucky to live at a time when there are light, portable wheelchairs and most people have cars.

Hope this helps - feel free to post again or PM me if that would help.

Dear Anon,you’ve got your situation ersa about face…You’re not giving but but finding coping solutions for YOUR version of MS.If you have the money,get a wheelchair,get a small scooter,get a powerchair…GET ALL OF THEM if possible and use whatever suits.Our days tend to be different,so the way we cope needs to be.

An OT or Fizzio may say you need to use your legs,so have a whizz around then ‘do’ your legs when you’ve got in.People will think more of you for being out ‘avin’ a go.Vanity is probably the biggest problem with some peeps. This is the first contribution I’ve made on here for yonks so it may be a bit brusque,but there will be folks on here watching, thinking,tish,he’s back spouting again.

Wb

I am currently wrangling with the same problem!
My main problem is I recently (about 15 months ago) developed SPMS I live half way up a farly steep hill and my favourite pub is along the road at the bottom of the hill.
I am slowly comming round to the idea that if my PIPs outcome is favourable I will be beating a path straight to the mobility shop!

Life is too short to worry whar other people think!
Go for it!

Good Luck!

Steve.

I like it when your spouting Wb :slight_smile: X

That made me smile Steve. Men and the pub :slight_smile: X

Steve I don’t know what type of mobility aid you are thinking about using but I got my self propelled wheelchair free of charge via the girl I saw at physio. I didn’t ask for one, just told her in conversation I had been hiring one when shopping about town and she said she would get one for me. Jan

Hmm maybe not a self propelled chair if your on a steep hill, sorry I should read posts properly. Jan

Thank you to everyone for taking time and effort to answer my pathetic post.

Sometimes we need a shove to get to the light at the end of the tunnel…I feel better already for your comments :slight_smile:

I am there as well but, annoyed with myself because, I am still stumbling about so I am doing well but, the stumblig is getting more difficult. Do wheel chairs and or scooters limit your options, getting to folk festivals might become a thing of the past. Sorry you find yourself thinking difficult thoroughts.

David

Good luck anon. I use a walking stick for balance issues and tire easily. I’ve been talking myself into buying a travelscoot for months now. One day, I’ll bite the bullet :slight_smile: X

Bite the bullet Blossom. It’s great. I can now go shopping again.

I bit the bullet last July and got a wheelchair I still walk every day but If I am going to be doing a lot of walking or standing/queuing I use the wheelchair I would rather not be in a wheelchair but I went on holiday to Lisbon before I had a wheelchair, and have been since I had a wheelchair saw more with the wheelchair, also means I do more activities with my wife rather than my wife going on her own. Unfortunately it means I have no excuse for not going shopping with my wife, all my close friends said it was about time I swallowed my pride and got a wheelchair.

I think I need to look at scooters but trouble there too as I would need to leave one outside ( concerned then about it,s security ) no room indoors…problems already getting about small over full home.

I would like to go for a scooter that would go on grass and rougher ground if I got one … OH is suffering with Asbestos related lung disease so could never push me and we live in country and like woodland walks etc when possible. BC mentioned a scooter which would do outdoor country work…I must look into this I guess.

Cost is an issue so maybe not possible to get a new one, maybe look for used one.

Thanks again for ALL replies, much appreciated truly.

I think I need to look at scooters but trouble there too as I would need to leave one outside ( concerned then about it,s security ) no room indoors…problems already getting about small over full home.

I would like to go for a scooter that would go on grass and rougher ground if I got one … OH is suffering with Asbestos related lung disease so could never push me and we live in country and like woodland walks etc when possible. BC mentioned a scooter which would do outdoor country work…I must look into this I guess.

Cost is an issue so maybe not possible to get a new one, maybe look for used one.

Thanks again for ALL replies, much appreciated truly.