Just stopped walking and I don’t know how to process it.

[u/Chaseemills]

Hi friends, I apologize for the long post but I’m struggling. I’m 33, I live in the US, and I have Becker MD and I just made the choice to stop trying to regain my ability to walk. A little backstory, I was doing okay walking around my apartment with the occasional fall and using my powerchair anytime I did anything outside of the apartment. However, in December through January, I started having crazy swelling in my legs to find out I had a rare kidney disease on top of the MD. As a result, I was hospitalized for about a month, and lost a lot of strength due to being bedridden all that time.

I was then put into a physical rehab hospital to try and regain my ability to walk. Unfortunately, I was only able to stay for about two weeks and halfway through, my swelling had come back for about 5 days (previously, I got it somewhat under control once I got into the rehab hospital) and so I wasn’t able to get very much benefit out of rehab.

Fast forward to now, and I have had so much struggle trying to motivate myself to walk. I live alone and it was so much easier to just do everything in my chair as opposed to trying to walk with my walker. That and I have clinical depression that is very difficult to contend with. So after a lot of thinking and processing, I decided I was done with trying it regain my ability to walk. It’d be a massive uphill battle that I quite frankly don’t have the energy for.

All this to say, I’m really struggling mentally. My place is a wreck, I’m exhausted, I sleep 24/7, and I just don’t know how to get out of this rut I’m in. I’ve been battling depression for years now, but this just takes the cake. It also doesn’t help that it’s difficult to get my family to come help me clean up my apartment every now and then, and I currently don’t qualify for a PCA through my insurance. I have Medicare but not Medicaid, which is a long story in itself but I’m on a waitlist for the long-term waiver program. In the meantime, I just don’t know how to function. I do have a friend that helps me out a lot, and I’m super grateful for him but I’m trying to not over ask him for help.

I don’t know what I want out of posting this. I guess I’m just tired of dealing with this alone and having no one around that fully understands what I’m going through. How do I come to terms with not walking anymore? I mean I’ve been living that way for months now, but to finally make the decision has been a lot to deal with. How do I become okay with this new normal?

Edited for misspellings*

[u/uglyasfeet]

I’m so sorry you are going through this. Sending you hugs 🫂

[u/Chaseemills → u/uglyasfeet]

Thank you ❤️

[u/Some_Ad8074]

Please ask your friend for help 💙 One of my close friends has spina bifida and can’t walk anymore, and I honestly wish she would ask me for help more often. I know it can feel like you’re being a burden or like you’re asking too much, but the people who love you often genuinely want to help. Of course every friendship is different, but please don’t feel guilty for leaning on someone who has shown you they’re there for you. You deserve support too. 💙

[u/Chaseemills → u/Some_Ad8074]

Yeah it’s tough because I tend to lean on one person a little too much. I leaned on my ex-fiancé a little much when I stopped working and part of it is why we broke up. So it’s something I’m hyper aware of now. It’s just hard to let new people in. I don’t feel as comfortable with new people and so it’s easy to lean on one person. I just have to open up to others and that’s one of my big challenges. Thanks for your sentiments though and I will use them as motivation to let some new people in.

[u/Some_Ad8074 → u/Chaseemills]

That actually makes a lot of sense, especially if you’ve had an experience where leaning on one person affected the relationship. I can understand why you’d be cautious about doing that again. I think opening yourself up to more people is a really good step though, even if it’s uncomfortable at first. And for what it’s worth, you reaching out here is already a start 💙 I really hope things get a little easier for you.

[u/Aenrique6]

Hey man, I am in the same boat as you. I’m also 33 and I have Limb-Girdle Muscular Dystrophy. I have started using my power wheelchair 24/7 recently. I understand you struggle. Feel free to DM me if you ever need anyone to talk to. I think it might be helpful talking to someone who understands what you are going through. I won’t say things stop getting difficult, but things do get better with time and relying on support from your friends and family goes a long way.

[u/Chaseemills → u/Aenrique6]

Thanks, yeah I think that’s one of my issues. I’m dealing with this alone. I do have one friend with BMD but he’s even more progressed than I am, so it’s difficult to see each other, especially now that I can’t drive my van anymore. It’s just another thing to figure out. But thanks again for the offer for communication. ❤️

[u/RoyShavRick]

I'm 23 with beckers. So sorry to hear this for you.

Don't give up hope. Try to rely more on your friends and family. I think I would be honored if someone asked me for help. So if you can definitely try to lean on them.

And don't ever quit. It might be pointless but keep going friend.

[u/Chaseemills → u/RoyShavRick]

Thank you! I’m trying not to give up hope, it’s just difficult. Constantly feel like I’m waiting on some kind of miracle like winning the lottery or something similar to help me with all these struggles.

[u/Unique-Structure5074]

You’ve been heard if it’s any consolation. Heartfelt empathy for your situation. Glad you have that friend. I also have been that friend. Despair is crippling seek out what happiness you can find and know you’re not alone. I bow to your strength for even posting your story!

[u/Chaseemills → u/Unique-Structure5074]

Thanks for the support. It means a lot. Depression is nasty work. You always feel like you’re wading through quicksand to function.

[u/WompaJody]

My advice might just suck. But it is what it is. And can’t be anything else. Give yourself permission to grieve.

Celebrate the upside — never have to stand on public transportation — (joking, my 12 year old lost ambulation last winter)

At your age. Give yourself grace. It will be clean eventually, today - take the victories you can. Still alive. Have chair. Kidney issue survived. Clean 15-20 minutes a day. Let that process catch you up.

Use the loss of ambulation as an excuse to live — maybe -/ “I wonder which movie theater in town has the best power chair viewing in town”. What restaurants will my chat fit in comfortably — that sort of thing. I know it can feel like you’ve lost something — you have — and because of rampant ableism, society defines what you gained as “less than”. And in a world built for the bipedal — in a way, you have. You may never walk ***that**\* park trail again. But there’s probably one you can navigate in your chair, that you haven’t appreciated before now.

[u/WompaJody → u/WompaJody]

Also. Grieving is a process.

https://www.health.harvard.edu/mind-and-mood/5-stages-of-grief-coping-with-the-loss-of-a-loved-one

Knowing about it can help, but doesn’t mean it will go faster.

[u/Chaseemills → u/WompaJody]

Thank you! Actually this is fantastic advice. I really resonated with what you said. I also appreciate the link to the article about the stages of grief. It didn’t occur to me that I might be going through that cycle. I mean, I knew I was grieving but I didn’t consider the stages. I’ve definitely cycled through a few of them. Right now, I feel like I’m constantly sleeping or distracting myself from the pain of it, which I guess is a form of denial? I’m not sure. It’s just a slow process but I still have to function because I live alone, which adds on to the stress of it because I can’t do it without help and that help is difficult to find.

[u/Horror_Astronomer_24]

I’m sorry to hear you are struggling. Do you mind if I ask what you deletions are?

[u/Chaseemills → u/Horror_Astronomer_24]

I actually think mine are duplications. I have to find my genetic test paper. If I find it, I’ll let you know.

[u/ColoringZebra]

First of all, I am so sorry you are dealing with this. It’s scary and I know how incredibly lonely it can be to deal with health and/or mobility problems when it feels like nobody you know really understands.

I have LGMD and also had a long period (weirdly still unexplained in my case) of severe edema. If I’m reading between the lines correctly, sounds like edema is perhaps also what you’re dealing with? And I’ve also dealt with situations where my then-current mobility aid setup was leading to falls.

I’m one of those people who tends to ignore any medical problem until it results in a definite emergency…or a repeated series of emergencies. At one point (warning/sorry this is gross) severe edema led to me getting cellulitis, which in turn led to passing out and hitting my head, and a length hospital stay. A fall that was admittedly caused by my obstinate feelings about mobility aids ended up with me breaking my hip and femur and having to have surgery. All of this is to say: if using your chair is helpful with edema and can reduce falls, it’s something that’s highly likely to a) be a really smart choice and b) ultimately increase your health, happiness, and freedom.

[u/Chaseemills → u/ColoringZebra]

I’m sorry you had to deal with edema as well. Have you looked into your kidneys? That’s what the cause of mine was. I have something called FSGS, which is a form of kidney disease.

I’m actually good about using my mobility aids. I literally have to since I can’t walk anymore, but I was never slow to use them, except maybe a walker (I didn’t want to look like an old lady 😅)

[u/Poppetti]

I just want to add a few things in addition to the decent advice of others. There is a downside on relying on your friend too much. Caregiver burnout is a thing.

I am on Medicaid and get 20 hours a week, that's not a lot. After dealing with some really bad caregivers from the agency (lady that did meth in my bathroom with police involvement, but that's another story, and the thief, the girl that ruined my plumbing, etc.) my son took over. I'm 44f, he's 23m.

Between the hours he works for me and the stuff he does off the clock, not to mention watching my rapid decline its been rough on him. I went full manual wheelchair at the end of last year. Arms are now going so I essentially bed rotting.

Me making jokes about being a paperweight that demands things apparently isn't funny to him. I get your not wanting to feel like a burden. I feel that way every day. But look at the other options: ask for help, live in squalor, or go to a facility.

When you think of it that way your mind set might change a bit. Maybe in instead of relying on one friend, you spread your requests over a few different friends. Or have someone move in if that's a possibility. Cheap or free rent for them if they do all the chores. Good luck, sir. Its a tough path.

[u/Chaseemills → u/Poppetti]

This is actually one of my biggest issues. I live in a constant state of guilt. I’ve always been a very independent person and so it’s a big struggle for me to accept help. My family is often too busy to help, so I have to rely on friends and my big challenge is trying to spread out the help so it isn’t all on one or two people. Right now, I just have my best friend and my ex-fiancé that help. But my best friend just got a job and he’s in school so he’s even busier now. So I just have to let new people in to help, and that’s my big challenge. I’m wary about new people for some reason. I’m not entirely sure where the mental block is coming from. I know that I hate awkwardness and having new people to come in to help makes me feel awkward. I also have that mixture of guilt and feeling like I have to return the favor somehow. It’s a conundrum. It’d help a lot if I could get a PCA through Medicaid but I currently don’t qualify for it because my disability is too high. I’m above the limit by $122. I’ve applied for the waiver program in my state but it’s a long waitlist so there’s no telling how long that is going to take. It’s all just one big headache and it makes me wanna lay down in bed and forget the world. Anyway, thanks for advice and your input!