Disability Fatigue

[justnick]

This is just a rant.

For those that don't know me at all, I'm a C-5 quad and pretty active. I'd say I'm mildly successful in the context of PWD and a generally upbeat person. But I'm tired.

I've been feeling so tired of it all lately. Being a quad sucks in a lot of ways but I suck it up and carry on - no biggie. But the little things have been wearing on me. Small frustrations here and there throughout the day that I shouldn't let bother me. Then there are the bigger difficulties. Missed opportunities, failed attempts, things that I just can't do. I've been at this for 10,198 days without a break and won't be getting one anytime soon (I hope). There's nothing I can do about it and that is daunting. 

Just writing that out is somehow therapeutic. On to the next thing.

[curiousginger]

I hate that the only reaction to posts is a thumbs up. Have dropped you a message if you want to vent 🫶🏻

[loveonaroll2]

Deal with fatigue too as a person with cerebral palsy disability fatigue is definitely real Nick

[Dani]

I'm sorry you're feeling down, and hopefully, with summer around the corner, you'll start feeling better again and find joy in the little things.
I am sure everyone can relate that sometimes life is just so tiring and frustrating. I've been pretty pessimistic for several years now, have withdrawn myself from people mostly, and am trying to stay sane and stable with all the crazy and pain in the world. I prefer the company of me, myself, and I...

[anthonyg]

I feel ya on that bro. I be feeling that way too. We have to keep pushing!!!

[Braced4Impact]

I would say with my disability, I have it a lot better off than some, but even I get the fatigue over the situation, man. It sucks not being able to do what other friends are doing, missing out, the "disability tax" of paying for shit that health insurance won't cover. Again, I'm very grateful for what I do have in life, but there are days where it can drive a grown man to tears. You're not alone brother.

[britishtetra]

I understand what you mean, it’s bloody hard sometimes being a quadriplegic. Over these last few weeks, I have had my eyes slightly widened, and I have just had my first treatment of chemotherapy. I don’t feel too bad at the moment, but perhaps that’s the steroids. Although I stop them tomorrow so I hope I am not cold turkey for a few days. Do you have any interest that can keep you motivated? Someday you just don’t want to get out of bed, sometimes you just don’t wanna eat. But! You have to force yourself. It’s a bloody hard life, mate. Do you have many disability groups around you?

Pete

[Braced4Impact]

Jun 1, 2024 3:48:58 GMT -5 britishtetra said:

I understand what you mean, it’s bloody hard sometimes being a quadriplegic. Over these last few weeks, I have had my eyes slightly widened, and I have just had my first treatment of chemotherapy. I don’t feel too bad at the moment, but perhaps that’s the steroids. Although I stop them tomorrow so I hope I am not cold turkey for a few days. Do you have any interest that can keep you motivated? Someday you just don’t want to get out of bed, sometimes you just don’t wanna eat. But! You have to force yourself. It’s a bloody hard life, mate. Do you have many disability groups around you?

Pete

I have tons of hobbies which help distract.  Of course, it doubly sucks when the disability gets in the way of hobbies or things you love (that's when I get crankiest) but even if it's getting lost in a good book or binging on a series, keeping your mind busy is so important.  Probably for everyone, but especially if you have a disability.

[Sir Paul]

I go through these cycles too, brother. Talking about it helps. In fact, it might be the only thing that does. 

[jakeonwheels]

I am right there with you. (But I’m not a quad) but just the day in day out grind of everything just being a little harder than for everyone else. And that I’ve lost a lot of independence the last few weeks and I’m not sure when I’m going to get it back. It sucks.

I admire your keep on and carry on attitude and ability to get through these feelings, bc on days like today I feel they will overwhelm me. Even working on my R2D2 Lego set I was so pumped about isn’t even doing it for me.

I’m skipping a friends party bc I just don’t have it in me to be the only disabled person around and I just don’t have anything to talk about other than I feel a dread and despair settling over me. Which I know will pass but is confusing and tricksy when I’m in it.

Anyway, with you dude. It’s really hard.

[bsmn]

I can understand I've know disability fatigue my whole life in some form or another, but in the last 5 or 6 years it has been more pronounced. I still live at home with my mother amd after my dad passed away it was up to me to take up a surprising amount of slack doing things, I take the trash up to the street for pickup, mow, take care of the outside, etc (I had a neighbor who helped me with big outdoor projects, but he passed of cancer 2 years ago). not to mention keeping the books and paying the bills. However in 2018 my mom was diagnosed with Rheumatoid Arthritis and Chronic Kidney Disease which meant she had to quit her job, and for a couple of years I had to support both of us with my income and when she was unwell, which can be frequent, I now had to do Laundry, Dishes, etc. on top of my usual chores. Because of this, my work suffered (Less trimming, less cleaning, etc) To add to this my mother was hospitalized last year 5 times in 5 months for a variety of issues, which added stress on top of everything else (add on top of this my mom having covid once and having to put a dog down).
Eventually, things stop being fun or interesting to do and you're just going through the motions; get up, get crap done, go to bed. Eventually, I talked to my dr about it and he adjusted my meds, which helped alot. I'm also trying to get back into old hobbies and meet new people to change things up.
In summary, I get it 100%

[Experimentalist]

Hey Nick,

Sorry you’re feeling tired. Just remember that it’s ok to take a break sometimes. I know you cannot pause the disability but you can take a break from your responsibilities and your natural inclination to be at your best at all times. Go to the park and read a book or do nothing for a while. It’s true you and I have to work extra hard to just keep up with the average Joe but we don’t have to do it every minute of every day. Even with a day or two off you’ll still manage to stay ahead and it’ll help you build up your reserves and motivation.

[mnquad07]

yeah and little things, most overlook, that wear you out in physical ways. I mean, getting ready for the day and/or to go somewhere is not only time-consuming but it's a workout. Sometimes after repositioning me and getting me ready for bed time or for the day... Feel like I just ran around the block or something. I know I took this a different route