Any advice about living in a wheelchair?

[StarryEyed]

Hi. Is there anyone here who has transitioned to a life using a wheelchair? If so, do you have any advice as to how to find the will to live with the challenges that go with this?

 

[Throwawayacc3]

Is that your position now?

 

[beardyoldcorpse]

Haven't any personal experience…but all I will say is my wife was wheelchair bound for a short time before she died. If I could have her back in a 2heelchair …even for a while I would give anything. Yes it can't be easy but not having you around for anyone who truly loves you is much worse!

 

[theboy]

May I ask why you are in a wheelchair?

 

[Throwawayacc3]

Hi. Is there anyone here who has transitioned to a life using a wheelchair? If so, do you have any advice as to how to find the will to live with the challenges that go with this?

I read your other post about your feet. This is my take but please don't take this the wrong way. After my cancer op I was in a wheelchair in the hospital and about half a year I was a bit all over the place. Arm muscles and stabilising muscles got way stronger (as I couldn't move my legs as they would initiate sharp pain to my abdomen area) so lots of "moving" without moving the legs or "core" area of the body.

Biggest thing that got me though it? My dog Poppy. Before we would always play but she knew I couldn't move and realised that I don't sleep on the sofa downstairs so something is going on. This sentiment creature had more patience and understanding than people as far as I'm aware.

My godparents son went wheelchair bound (dirt bike accident) however they are so well off they bought a flat and kitted it out for him. His g/f left because of the change of scenario but he got another about half a year later. His personality is quite outgoing and upbeat so I don't know what his true thoughts are on it.


do you have resources? Do you like animals? Just ideas.

 

[wait.what]

I don't use a wheelchair but I do have an electric scooter, a walker with wheels, and a cane. Which one I use depends on the distance I need to cover, and how easy it is to travel with a larger/heavier mobility aid.

It's difficult to say much about your situation without more information, but I can tell you that it's a good idea to put as much thought into choosing a wheelchair or other assistive device as you would put into buying a car or a house. Your ability to get around, or not, will have a huge impact on your quality of life.

 

[Throwawayacc3]

I don't use a wheelchair but I do have an electric scooter, a walker with wheels, and a cane. Which one I use depends on the distance I need to cover, and how easy it is to travel with a larger/heavier mobility aid.

It's difficult to say much about your situation without more information, but I can tell you that it's a good idea to put as much thought into choosing a wheelchair or other assistive device as you would put into buying a car or a house. Your ability to get around, or not, will have a huge impact on your quality of life.

They posted in another thread how they may lose their feet. My godparents are super rich so as you said getting assisted things (like the flat, car, etc) will make things way easier. But it's so expensive. They had to sell one of their houses in order to do all this stuff. And this is in the UK.

 

[MyChoiceAlone]

i was using a walking frame for ... i don't remember how long. just moved about 2 weeks ago, my feet are killing me more than usual. apparently you get complaints for smoking in your own house (apartment/condo) here but not illegal. feet need rest for the swelling to go down but to be considerate, i have to go out each time. just ordered a wheelchair. hopeful that it comes today. fuck society.

 

[StarryEyed]

Thank you all for your input and concern. My heart goes out to those of you who relate.

I have sensory and motor nerve damage in my feet due to a degenerative spine, chemotherapy, 40 years of psych meds, the psychological effects of childhood trauma and a thyroid autoimmune disorder. As a result of the nerve damage, the muscles and fascia are now deteriorating. There is also the possibility that I have an as-of-yet undiagnosed progressive neurological disorder. It's been a year now that I can barely walk or stand. I've exhausted all treatments. Last month, the medical team said there is nothing more they can do. So I'm in the market for a wheelchair. It's been a long battle with so many illnesses that I just can't pull myself together to rally yet again. My first reaction is to say fuck it and off myself. Suicidal thoughts are my go-to safe place at times like this. Suicide is a beautiful fantasy of relief from the mental and physical suffering - a relief until I get into the logistics of suicide. I'm scared to death as to where I'm heading, but even now is something I don't want. It's so exhausting this challenge called Life.

@Throwawayacc3 I have my cat who saves me every day. Are you out of a wheelchair now? I don't have a rich friend or relative, but I have enough financial support from the government and family that I can get a little more than the basics. I have a ton of emotional support from friends and family, including from some if I decide to ctb.

@wait.what I too use other mobility devices (for a year now) - two different walkers and a cane. But I can't last long on those due to foot pain. The longest I can go is maybe 1/4 mile (1/2 km) every other day. That's why I'm looking at a wheelchair. I'll probably have two - a manual one and an electric one - for, like you say, different uses. A scooter doesn't appeal to me because they're so big, but it's not totally ruled out yet. I've barely done any research, as I'm still trying to decide whether or not I want to be here. And I'm grieving the life I had. It's hard to build a new life when I haven't grieved the old one. Are you adapted to your mobility challenges?

 

[Throwawayacc3]

Sorry I explained it badly. Was only like that for months - not an extended period of time so I can't relate exactly to your situation - but for that time it defiantly was a struggle.

As long as you have some resources that's good / at least you can do what you need with it and there are no stipulations towards it.

My opinion - maybe think about ctb after your cat passes. I don't give a fuck about people but I can't do it to my dog.

 

[Worndown]

A few sites thay may help:

https://www.google.com/search?q=living+in+a+wheelchair&oq=living+in+a+wheelchair&gs_lcrp=EgZjaHJvbWUyCQgAEEUYORiABDIHCAEQABiABDIGCAIQRRg8MgYIAxBFGDwyCAgEEAAYCBgeMggIBRAAGAgYHjIICAYQABgIGB4yCAgHEAAYCBgeMg0ICBAAGIYDGIAEGIoFMg0ICRAAGIYDGIAEGIoF0gEJNDgxNDlqMGo3qAIUsAIB&client=ms-android-boost-us-revc&sourceid=chrome-mobile&ie=UTF-8#vhid=zephyrhttps://www.healthline.com/health-news/living-with-paralysis-why-my-disability-doesnt-define-me&vssid=zephyr-w-https://www.healthline.com/health-news/living-with-paralysis-why-my-disability-doesnt-define-me

Living Well with a Disability - HelpGuide.org

Are you struggling with a disability?

www.helpguide.org

The Emotional Journey Of A Full-Time Wheelchair User | Vantage Mobility

Larry Watson parked outside the high school gymnasium and football field in Missoula, Mont., where he played just three years earlier, and screamed

www.vantagemobility.com

 

[StarryEyed]

@Throwawayacc3 yes, having the basics covered is a game changer. Good to hear you're up and about again. Yay! My kitty is only three years old, so she'll be around a long time probably. She's so incredibly loving and I'm sure she'll be happy with anyone who's good to her. I have two close friends who have already said they'll take her if something happens to me. As for staying for the sake of people, well, even though I love a lot of people, my life is not held hostage by them. They'll get over it. There's only one person who won't get over it, which is my aunt. But she's 88, so likely she won't last much longer. I couldn't go before she does. She's also against euthanasia, so even if I qualify before she goes I can't in all conscience do it.

@Worndown you're an Angel! It never even occurred to me to run searches like that. That will keep me busy for a few weeks now. I can just leisurely go through those links, imagining possibilities of a new life. At least I'll be making a balanced decision about whether or not to step up to bat for another challenge. Thank you from the bottom of my heart

 

[Forveleth]

Can't really relate (although I've been legally blind since birth so I do sympathize with conditions affecting everyday life) BUT there's a youtuber I watch called Footless Jo. She had to have one of her legs amputated due to chronic pain. She talks a lot about the emotional journey of losing a limb, dealing with pain from the amputation, and even having to get a wheelchair herself. Not exactly the same situation but maybe some of her thoughts could inspire some coping ideas for you.

 

[MyChoiceAlone]

first night with a wheel chair. i hope you don't have stairs first off or live somewhere hilly : otherwise it's pretty comfortable well - in my physical condition at least. heavy doors are a pain in the ass. in the short time i've had it, i've had two people offer help though i refused. apparently they take pity on one that uses a wheelchair compared to a walking frame but whatever.

side note: my cousin came over and i decided to use the frame to go to dinner. fell over. thought i broke my pinky finger. it was all contorted. so my cousin insists that we go to a hospital. along the way i am told we are going to the emergency ward lmfao! so i ask the cabbie : is a pinky finger worth going to the emergency ward??? he did not reply. cousin says 'that's the only thing open at this hour' i didn't understand what they said but i'm thinking it's just a very bad sprain.

going to a different hospital later today. i hope they give me some cool pain meds. not that i absolutely need it but i don't have much exp with them and hope to stock up.

back to wheel chair: ummm yeah it's hard to propel yourself with one good hand. mostly going in circles lol.

oh and my ribcage hurts as well. will try to milk that too lol

 

[StarryEyed]

@MyChoiceAlone I hope you're being well taken care of and on the mend!!!

Can't really relate (although I've been legally blind since birth so I do sympathize with conditions affecting everyday life) BUT there's a youtuber I watch called Footless Jo. She had to have one of her legs amputated due to chronic pain. She talks a lot about the emotional journey of losing a limb, dealing with pain from the amputation, and even having to get a wheelchair herself. Not exactly the same situation but maybe some of her thoughts could inspire some coping ideas for you.

Hi and thank you so very much for recommending Footless Jo. She's brilliant and so articulate and so gutsy and so funny. Wow. Yes, she's very helpful. There are other YouTubers with disabilities that I have been following recently that are really helpful. Indeed there is a lot of overlap with many disabilities. I've also been watching movies and series about end-of-life care, euthanasia and suicide, which are also very helpful. Here's one of my favourites lines .. This is from the Netflix series "End Game", said by a triple-amputee doctor, "Suffering is the gap between the world you want and the world you've got". How perfectly said is that? That's definitely where I am - suffering because I don't want this life with malfunctioning feet. But if I can accept this reality, perhaps I won't be suffering. Or, just maybe, at least not as much? Do you relate?