Why I Can't work...and How I Stay Sane.
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- เผยแพร่เมื่อ 8 ก.ย. 2024
- If you're new to the channel I'm a disabled guy who can't work and is housebound almost all the time, so TH-cam is my outlet for doing something with my life. Subscribe to see more videos like this one!
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Man, I can relate so much to this. I Also have CMT, I also love Star Wars and rock music (can't play any instruments mind you), I work part time (4 mornings a week) in a supermarket, when I get home I'm way too tired to do anything else for the rest of the day. My Dad also had CMT and retired from work at the age of 42, he spent the rest of his life in front of the TV being so miserable. I'm 44 now and I'm so grateful that I can still manage even just a few hours of work. On my days off I also like to watch movies, try to create artwork and paint Warhammer figures (when my fingers allow me to!). It's incredibly hard to be motivated when your body is constantly telling you to lay down and just do nothing all the time. Staying positive is definitely the best medicine.
Hello congratulations to you. Great
Myself I am going coco crazy, the isolation. Small apartment upstairs..struggling to take care of myself. Don't know how to get better
You are an inspiration, my friend. I admire your motivation to keep yourself busy, that certainly takes a lot of patience and perseverence. What I really enjoy is how relatable you make your disability. I have a disability in my left hand and I've also found TH-cam to be a great outlet to convey my thoughts as well as to spread awareness of what we do and how we do things. You're amazing, keep it up!
This is such a kind comment. I really appreciate you taking the time to write it. I want to say I try and be relatable but most of the time I just talk about my own experiences and how things affect me. Sometimes i feel a little selfish and that I'm not looking at the bigger picture but I'm glad people seem to get something from it :) TH-cam is indeed great, gives me a reason to get out of bed every day.
@@SamBosworthMusic You? Selfish? Nonsense! You're making the best of your situation with what you've got, that's commendable. We've all come here to see you, and I wouldn't have it another way. Love your stuff man, keep pumping out the content!
This is a great video. I watch TH-cam videos for an hour after I make breakfast to recover from making breakfast. Then when I put my toddler down for a nap I take a nap with him. Then it seems like I make my kids lunch (something out of a microwave -terrible I know) then sit and watch them play until I have to make dinner. After I clean up from that and pick up toys I’m literally done for the day. I sit on the couch watching whatever makes my husband happy until he says the magical words “lets go to sleep”. I’d love to have a hobby but maybe when my kids are older I’ll write that blog I keep meaning to write. Right now I have plenty of structure but seem to be just getting by.
Mind you I sit through all of this and it’s still exhausting. Who would’ve known.
I would definitely read your blog if you get round to it. Sounds like you have your hands full as a busy Mama!
I do my best to plan my days, same reasons as you. But my body likes to play this fun game called "I'm not telling you how many spoons you have until you run out" so I have to structure everything around taking a break every hour or so to conserve energy and avoid a flare. It definitely helps me mentally to plan my days in advance but they almost never go to plan haha
That is some good advice haha. I will definitely take that on board. It's funny I think we try and tell ourselves we have this control over our illnesses, and I even make videos trying to help people gain control of theirs, but it's so hard to follow your own advice when you just really want to do something or forget about your disability for a day
@@SamBosworthMusic Oh yeah that plan totally goes out the window if I have a good day hahaha. If I'm feeling good it is REALLY hard to convince myself to take a break and do nothing
Do you have Delayed Sleep Phase Disorder or some other circadian rhythm problem in addition to your other disabilities? Just wondering because I have it and in addition to meds that need to be timed properly for me to function and multiple physical conditions sapping energy and causing pain, waking up in the afternoon every day takes almost every entry level job off the list of possibilities for me.
You have any video of your walking.???
I don't, why do you ask?
I know that this video is over a year old, but you're so lucky to be in the UK if you're going to be disabled anyway. The US is basically a disaster for anyone with a permanent disability who isn't wealthy and can't work. The only, mediocre, help in the US that disabled people can get for medical cost help basically force you to stay destitute forever as long as you need the help. If you ever lose the help by violating the rules, you are likely to never get the help back again in life. You're basically a criminal in the US if you need medical help from the government right now if you try to make enough money that would you any actual good and you get discovered that you've done it. In my specific case, the only reason I can't work is because I can't finish my schooling since I am not legally allowed to make money. The effort to finish a university degree is not really worth it when you can't use it because your degree is not in something you can do at home and you'd have to retake a lot of classes because the requirements changed for the degree while you've been unable to go to school physically. If the US had a national healthcare system, I could definitely do things to make money, but never enough to really replace the medical help I can get with the way the US system works. I would have to work for longer than humans live by quite a stretch to be able to make enough money to replace the help, such that it is now. In the UK, I could make enough to pay taxes and use the NHS, even though it's not perfect either, but at least then I wouldn't have to have income limits and asset limits like in the US. Unfortunately, I'll never be able to have enough money to be able to immigrate and survive the 5 year waiting period to get UK citizenship unless I get married to someone with enough money to support me that long. The only problem with that, as with the UK I just learned in your video here, is that you can't get married in the US without your spouse's income being figured into your help qualification. The only exception in the US is that you CAN marry someone who is also disabled and in the same exact government help programs as you are, but that would be effectively meaningless because that would do me no good in the first place. I would effectively have to find a way to marry someone either very upper income or independently wealthy. Sorry for the long comment, but I almost never find a video like this on TH-cam.