How do you fill/ structure your day?

[Midnightmoon]

I have maybe the enviable situation of too much time on my hands...

I am (fairly) young and housebound due to my physical disability... I am really really struggling at being in the 4 walls. It's doing less than nothing for my mental health and fuling my 'what is the point of my continuing to take up oxygen' thought process even more.

I am not very physically stable, I can't bear weight in my legs due to a muscle wasting disease but I have full use of my arms. I spend a lot of time fighting against my health.

Stuff I've tried so far....

Arty stuff, I like messing about with paint and doodling, more formal art I have neither the skill or concentration for

Cleaning and sorting.. Number one A* activity is cleaning, on repeat. Things that are already clean, things that don't need to be cleaned. I don't care, I clean them anyway.

TV or radio or music is on 24/7, it keeps me 'company' but if I'm really honest I don't particularly like it and wouldn't care if I never saw a TV again, its just habit.

Very short fiction books( like the 100 page big font ones) - rubbish concentration and dyslexic, lots of effort to read and isn't really relaxing , more a task but I'm trying to persevere.

Stuff I liked before I was physically ill:

Walking silly distances with dogs
Work, I lived at work rather than in my own home it seemed.
If not at work, doing chores until I was back at work....

The thought of anything other than this existence or death is completely unfathomable and overwhelming. I need the tiniest of baby steps...

Would love to know what people do, from the mundane to the extreme to give me ideas... At the minute I've got to go to the corner shop once a week to work on as a 'big goal' which, well, isn't exactly the most life fulfilling idea but it's definitely practical.

 

[Sideways]

I also do the ridiculous dog walks and endless reading!

But I also do study and volunteering in my down time. All of my study is online - my brain operates best when it’s learning something new. And my volunteering keeps me balanced.

 

[Teasel]

I can imagine, possibly not immediately, but I can imagine you volunteering somewhere, possibly on phone or online if not in person.

But what do I personally do with my time? Lots of TV & YouTube. Some exercise - walking, indoor aerobics / kitchen disco, an exercise class. Going to the park / feeding the ducks. Some going to social things for autistics. Some cooking & more recently baking. Reading. Listening to podcasts / audio books. Computer games. Some art / cross stitch / taking photographs.

Yeah, I don't do a lot either. Hope you find some stuff you want to do though, very much so X

 

[No More]

Food
Up early to get my first lot of training in
Then off to work for the morning
Food 2.0
Potentially a lunchtime training sesh
More food
More work till 5/6ish
Snacks
Potentially the other training depending if I had time at lunch or not/easy day.
Food again
Wash all the grime and dirt off
Precious precious sleep

Is my kinda basic daily routine. Revolves around food work and sport

I generally also bake, do social stuff (dinners, group training, go out with friends, cheering on at various events), washing which is endless, bit of volunteering, the odd rot on sofa with film afternoon, very into podcasts - not such a fan of books/tv, long training days, competition days, sleep dep training.

 

[Midnightmoon]

my kinda basic daily routine. Revolves around food work and sport

Your washing machine or dishwasher must be on a permanent cycle with all that sport and food! I dip in and out of podcasts, might be good for me to investigate again as an alternative to the TV.

Lots of TV & YouTube. Some exercise - walking, indoor aerobics / kitchen disco, an exercise class. Going to the park / feeding the ducks. Some going to social things for autistics. Some cooking & more recently baking. Reading. Listening to podcasts / audio books. Computer games. Some art / cross stitch / taking photographs.

It sounds gentle, and gives me some hope that maybe I could get to this point too . Kitchen disco made me smile far too much! . Small groups/ social stuff is so very much a goal, it's nice when you can find your 'people' .

I've found some online YouTube exercise stuff so could add that to the list of something to try.

volunteering

I can imagine you volunteering somewhere, possibly on phone or online if not in person.

bit of volunteering

Volunteering would be fab as a long term target...I'd need to get alot more of my, erm, peopling skills back as well as some physical health to be anywhere near useful to people but yes 100% drawn to this.

 

[No More]

Your washing machine or dishwasher must be on a permanent cycle with all that sport and food! I dip in and out of podcasts, might be good for me to investigate again as an alternative to the TV.

Endless! I am *that* person who is forever wandering round with an emotional support water bottle and a lil snack. I feel I need one of those industrial catering dishwashers.

Oh audiobooks as well! I like to listen while I do, I’m not a big reader but I love listening to them.

Volunteering would be fab as a long term target...I'd need to get alot more of my, erm, peopling skills back as well as some physical health to be anywhere near useful to people but yes 100% drawn to this.

Yet to work out why volunteering scratches my brain in the way it does, but I always just feel so much better after. It’s just a nice way of sharing some moments with my fellow humans without any sort of expectation of a return? Dunno. Would recommend for sure!

 

[Lost in the Woods]

OK, you are talking about something I have a lot of experience in. In 2001 I started collapsing for no known reason. At first the docs thought I had picked up some infectious disease in China, then they thought it was a heart issue and finally they said it was 90% sure I had MS but they were waiting for the lessons to show up in an MRI to confirm the diagnosis. Several hospitalizations later a guttsy neurologist thought it might be something else and she order 35K in genetic testing without insurance prior approval. She said “we will just let them catch up”. The genetic testing revealed I have Spinocerebellar Ataxia type 8. Now that the testing found it the insurance company couldn’t weasel out on covering the testing. Long story short, I was told I was heading for a wheelchair. A chiropractor recommended I see a woman who works with people with disabilities using yoga and exercise. At the time I had to hold on to the walls to walk around the house. As the years rolled. By I was experiencing a lot of cognitive issues, confusion, brain fog, etc. Everyone just thought it was part of the SCA. Very recently it was determined that I also have PTSD and that the majority of my symptoms were actually from the PTSD not the neuro condition. So the woman I was sent to I have been working with on an almost daily basis doing yoga and exercise. She totally turned my life around. She got me back on my bicycle and I was able to to many long distance trip like from San Francisco to Phoenix.

The top thing that helped my was daily exercise, outside and in nature if possible. Reading has been a life long joy to me so now I read more than ever. I save skinny books with larger print for the times I am out of it and holding a heavier book is a problem. My double vision has slowed my reading speed greatly but the joy iIs still there. I do listen to music but not all the time, I want to preserve its specialness. I have a workshop full of machines I purchased as basket cases and figured out how to put them back in service. It has gotten a bit out of hand as I now have a complete machine shop and blacksmithing shop. The barn has the sheet metal shop as well as woodworking equipment. People see the shop and ask me what I make, I answer “anything I want”. I taught myself how to repair and use the machines using the internet, vintage machine shop books and YouTube. The learning is half the battle and half the fun.

I don’t know why exercise helps so much, it may be that it just raises your general fitness from which the disability detracts from thus netting out at higher functionality. I would have never believed such results as I have experienced were possible. My condition is a degenerative brain condition that is supposed to be untreatable. But here I am, walking, skiing, cycling hiking etc. At first the docs thought I was crazy and said what I am doing probably wasn’t hurting. Then they said keep doing whatever it is you are doing. Now, exercise is the top recommendation for people with any of the more than 50 types of spinocerebellar ataxia. Science is catching up.

Tell us more about your condition.

 

[GiantSquid]

I also struggle with being homebound and having too much time in my hands. In my case it's mental issue.

I like to attend community college cooking classes online. I'm a bad cook and don't enjoy daily grind of cooking, so I struggle with feeding myself. For some odd reason I like cooking with other people online and trying out new recipes when there is a teacher available to give tips and answer questions. I'm trying to teach myself more veggie recipes because my religion has a lot of fasting periods. Classes give me social contact without uncomfortable questions like where I work. I've also tried language class and free online lectures of different topics.

I volunteer once a week cleaning my church with three grannies. It gets me out of the house and the tasks are always the same, so it's very predictable.

I journal a lot and I knit.

I'm on postlists for a few testing things. There is university in my town and they sometimes need volunteers for some very interesting tests. I've been asked to identify different nationalities and trying different movement patterns with VR controllers. The university pays with movie tickets, which is great because movies are usually too expensive for my budget. This is usually in summertime. I also test new translation of the Bible and give feedback about it. My latest test was Polar sport watch's exercise program beta. Since I already owned the watch, it was free. I went through four week program once, and will probably continue it after I get over a cold.

 

[RainbowSearchParty]

My schedule is constantly changing because my work is constantly changing, and that is hard for me. But I try to make each days schedule the night before (or a week at a time when I can manage). Three meals, exercise, work, relaxing. The exact amount changes each day. But things that are helpful when I’m melting down:

Jigsaw puzzles
Bad TV
Organizing things
Making up projects like interior design stuff
Classes, like language and art classes. Lots of online stuff now post-pandemic, too.

It’s a fine line between doing too much and having no time for self care and having too much time and going a little crazy from that. Distraction can be good.

 

[Friday]

I’m sick, right now. I have an infection attacking my brain & nerves. It’s been getting worse, and worse, and worse, for two years now. If I had access to decent healthcare? I could probably fix it. Which makes things different than a degenerative disease. Where there’s no possibility of things being different. There is, in my case. I simply cannot afford the doctors. So I’m dying by my own fault.

ALL of my PTSD tricks, and half my pride? Are physically built. Which I cannot access right now. As my body is failing me. Or I’m failing my body. Depending on how one looks at it.

I’ve been sick & injured, before. But it’s always been temporary. Even hooked up to o2 for a year, meant I could brain someone with the bottle, ya know? S’why I carried the purse-pooch bottle out in public, instead of dragging the much longer lasting one on wheels.

My day? Is no longer about structure. No longer about being my best. It’s about doing what I can, as I can, and the rest is totally f*cked, and attempting to limit the damage that causes others. It’s not pretty. It’s not fierce. It’s not successful. It is grinding. Day in, and day out, finding moments. Moments where I can be myself. And the rest, just surviving for those moments. Like treading water.

 

[Midnightmoon]

My condition is a degenerative brain condition that is supposed to be untreatable. But here I am, walking, skiing, cycling hiking etc. At first the docs thought I was crazy and said what I am doing probably wasn’t hurting. Then they said keep doing whatever it is you are doing. Now, exercise is the top recommendation for people with any of the more than 50 types of spinocerebellar ataxia. Science is catching up.

What a story @Lost in the Woods , that's amazing! I'm so so pleased that you are living a full life in spite of the difficulties it's thrown at you, and hurrah for ballsy Drs who put patient care before budgets! I'm a full time wheelchair user, didn't used to be but I've been in this thing about 5 years now, it's a slow slow learning curve.

@Friday , I'm so so sorry. That's a hideous situation to be in. Mine is 'stable' but ultimately terminal, it's enough of a head f*ck to get any understanding of that, but curable but a lack of access to healthcare means therefore incurable throws a whole new load of head f*ckery into the picture. I have no words other than it's shit and I recognise the living life as and when you can all too well.

 

[Friday]

@Friday , I'm so so sorry. That's a hideous situation to be in. Mine is 'stable' but ultimately terminal, it's enough of a head f*ck to get any understanding of that, but curable but a lack of access to healthcare means therefore incurable throws a whole new load of head f*ckery into the picture. I have no words other than it's shit and I recognise the living life as and when you can all too well.

Ty. If I were less f*cked up I could make my own antibiotics. They would box my kidneys, but dialysis & transplant is a thing. At least in this country. And even broke, I would make the list. But I simply cannot think straight for longer than a few minutes. And pencillian needs weeks/months to grow & harvest/refine. I may still make a go of it. But any lapse in my attention = needing to restart. Again. And again. And again. Drugstore cowboy, may be the better choice. Ironic as hell, as it may be. I DGAF about your opiates. Give me your f*cking antibiotics.