Survive and Be Happy (or, how to survive a productivity-doctrine world when disabled)

Discussion in 'General Advice' started by paladinkit, Jul 18, 2016.

  1. paladinkit

    paladinkit brave little paladin

    This is not going to be so much a "how to" with answers as a "how to" of community, but hey, worth a shot. This is a place to commiserate, vent (although probably under spoilers to avoid triggering people just looking for advice), share resources/skills/tips, and generally remind ourselves that our worth is not determined by our work (thanks, capitalism).

    Inspired by @TheMockingCrows and I realizing our very much Same Hat situations in life and how that produces similar brain malfunction.

    I haven't been able to work for over three years, and don't have any plans or real hopes of ever holding down a proper job again. Regardless of the financial strain this causes (and that's not inconsiderable,) it does a number on my brain to have most of the world questioning why I don't just try harder and find something and what, don't I have any goals and hopes for myself?

    Yes. My goal is to survive and be happy, and that is a very high bar.

    Anyone else in the same boat?
     
    • Like x 8
  2. TheMockingCrows

    TheMockingCrows Resident POTSie potato.

    My same boat is POTS/Fibro/chronic fatigue/JHS combo that all equals to "But you LOOK fine!" Which leads to the judgey stares on buses and when I desperately fling myself at the empty wheelchairs in public centers so I don't collapse. All chronic, all very much in my damn way of Doing All The Things I Want To Do Precisely How I Wish To Do Them. This includes being able to hold down a job, and to an extent, trying to tackle school as well. Leaving me in an interesting little island of coming to terms with that and trying to keep hold of the happy.

    Big shout out to Kit for showing me the Booster Buddy app, that thing might help me a good deal in the long run. Also for just replying in the first place and getting my brain out of the panic hole and up towards the reminder that I'm not alone in this rather specific set of circumstances.

    My goal's the survive, be happy, and leave my mark behind in some way. Even if it's a little one that takes some determined hunting to find.
     
  3. paladinkit

    paladinkit brave little paladin

    *very gentle fistbump for invisible illnesses and people being shits about it*
     
    • Like x 2
  4. paladinkit

    paladinkit brave little paladin

    Okay, decompressed from earlier outing and ready to go!

    My boat consists of: depression that ranges from "moderately bad" to "burn down my life and destroy everything" over cycles of months to years, undiagnosed but pretty unmistakable autism (that probably hasn't helped with the "burn everything" phases of my life as I'm pretty sure the first one was actually a classic case of college-student-autistic-burnout), permanent and degenerating nerve damage in my hands and arms, PCOS (which mostly comes with weight gain, fatigue, extra helpings of depression, and a looming spectre of possible future diabetes and/or infertility), and a newly-refreshed pile of abuse-trauma-PTSD (I used to hesitate to use PTSD, but it's started displaying less atypically and more classically after this last abuse go-round, yay).

    The last few times I tried to work, it went like this: everything uses my hands. I'd come home from work in pain and exhausted, and the pain would slowly accumulate, as would the emotional and social burnout that comes with interacting with people in a difficult and inflexible environment all day. Extra heaps of emotional burnout because I could do literally none of the things I loved anymore, since the small daily allotment of functionality I can get out of my hands would get more than used up by an average work day. That is a fast road going nowhere near the stated goal of "stay alive" for me, no matter how much medication or therapy is involved.

    So I have been entirely supported by my wife for three years. I mostly stay sane with busying myself in two arenas. Arena one is the knowledge of housekeeping, even if actual physical tasks are still often out of reach for me (she insists it helps tremendously that I can keep track of our food, and plan it efficiently, and likewise with organization and cleaning tasks, even if I frequently need other hands to do the actual moving of things.) Arena two is perfecting old and learning new creative skills. I write and RP a lot, and in the past year I've been teaching myself to knit (going fantastically) and draw (going slowly). When it's just our tiny family - me, my wife, and my sister - I am content and happy.

    It's the rest of the world that - well.

    We're finally in a place where my wife is making enough that we can live in an apartment with no other roommates, which is making a huge difference - in two out of the three housing situations since I stopped working, one of the primary vectors for disgust/disdain/abuse from other roommates was that I was useless. It's hard to explain to someone exactly how much downtime I need, exactly how much I can't do - it's hard to admit to myself, and they end up hating me and it all goes downhill really fast.
     
    • Like x 2
  5. Salted Earth

    Salted Earth DISOWNING DOESN'T STACK, ASSHOLE

    I'm not completely sure if I belong here given my issues are basically all 'mental problems which cause physical problems because the brain is dumb' and I'm not sure if you maybe intended this to be a thing for people with physical illnesses, but, uh, hi! I'm disabled and can't work and I get super sad about it a lot. I have in fact Never Held Down A Real Job because I spent the time most people start getting into part time work at hospitals instead and it just all went downhill from there, RIP.
     
    • Like x 2
  6. paladinkit

    paladinkit brave little paladin

    I did not in any way to intend it to be limited to physical disabilities! It's a particular combo of physical + mental for me: I can do a lot of things, but doing them destroys my ability to do anything else good or fun (and also shortens the long-term functionality of my hands).

    It is very hard, and all of us need hugs (as desired.)
     
    • Like x 2
  7. Acey

    Acey cool as an amphibian

    My boat: autism + other brainweird + fibromyalgia.

    I have had one real job in my life. It lasted under a month before they fired me completely out of the blue, for reasons I strongly suspect were related to my autism. (They claimed I was "struggling," despite having cut my training time in half because I was "doing so well" mere weeks prior.) Honestly, I'm still really angry about it.

    I got fired late last May. I have had no luck since then.

    A lot of my issues re: not finding work are brainweird-related, but...I also want an actual source of income, and I'm just not gonna get that if I don't have a job. I get Etsy orders sometimes, and very rarely commissions, but that's it as far as income. My parents give me an allowance, but it's nowhere near enough to support oneself on (though granted, I live at home), and I get $65 a month from a local vocational facility (which has so far not been much help with the actual "getting a fucking job" thing), but...that's it. And it's soulcrushing to see people my age--some younger--who are gainfully employed and have been for a while, and who don't have to spend years looking for work.
     
    • Like x 5
  8. TheMockingCrows

    TheMockingCrows Resident POTSie potato.

    When I wasn't as bad physically as I am now (I was in denial and able to shove myself face first into things even though it was tearing me apart because we were desperate for the money and I was the only one who got a callback), I tried to hold a job. Lasted a short while before paranoia, anxiety, etc. reared its head and put a stop to it courtesy of a customer at the craft store almost grabbing me by the collar to scream in my face while threatening me for not listening to her instead of my boss. Was so paranoid I couldn't go NEAR the store for months after I quit without hyperventillating. Mental things can DEFINITELY be counted, and DEFINITELY need hugs, friend. Welcome to the party. 8U
     
    • Like x 4
  9. Acey

    Acey cool as an amphibian

    I still can't go near the store I worked at. I can't even think about it without getting upset.
     
    • Like x 1
  10. Salted Earth

    Salted Earth DISOWNING DOESN'T STACK, ASSHOLE

    Okay! I will TALK ABOUT THESE THINGS then. I have a debilitating mix of anxiety stuff, trauma stuff, mood stuff, ADHD stuff, and other stuff which probably isn't as important to get into here. Like I said, they can get really physical sometimes - I have a cortisol leak which makes my immune system worse amongst other things, and fatigue and general pain have always been factors in my life even though there doesn't seem to be a physical illness causing them that anyone can find, stuff like that. I've been informed by several people treating me that even though my problems might get More Manageable with treatment they'll never completely go away, I'm going to be dealing with this for the rest of my life. My country is okay at taking care of the disabled, luckily, and my treatment team are pretty adamant that I count as Disabled Enough to remain on the pension. My partner's really supportive too.

    I feel really bad about not being Productive Enough. I try and say that I'm a writer, but honestly I do very little writing on bad days, and a lot of them are bad days. It's what I'd really like to do, but I just don't feel like I do it enough to be able to hack it. I also draw recreationally, usually for RP stuff, which is a type of writing which is much easier for me because having someone else expecting a reply helps to push me to finish. I tie up a lot of my worth in taking care of the cats who fell into my lap, too. I usually end up managing to do one or two things a day, plus feeding them twice a day, which comes up to four things. I have to take breaks after doing things which are Especially Hard too, sometimes up to a few days before I can recharge properly. Embarrassingly stuff like showering and cleaning clothes counts as a thing so I don't do them nearly as much as I should. :( Honestly a lot of the time I just play video games or watch cartoons, which I feel bad about, even though I know I shouldn't really feel bad about it.

    Surviving is a full time job and it is Pretty Tough. (But I guess we are also pretty tough for dealing with that job when we've got so much stuff on our plate?? ugh no that sounds corny strike that entire sentence except not really i'm gonna leave it in so everyone can see how corny i really am) I'm really sorry to hear about your experiences with jobs, @TheMockingCrows and @Acey - that sounds hella stressful and unfair. :(
     
    • Like x 6
  11. unknownanonymous

    unknownanonymous i am inimitable, i am an original|18+

    my issues are mental mostly. autism, anxiety, and adhd. which means i have a lot of executive dysfunction, sensory issues and just... i dunno. the executive dysfunction means that, though i want to do art and think it would be nice as a career, i have trouble getting my brain actually moving on doing it. stuff like rping is easy for me, though, 'cause of how it prompts me and has a little bit of time pressure built in and just generally allows me to borrow momentum from it. but when it comes to doing art on my own, my brain just refuses to let me get started most of the time, even though i know i like doing art once i'm actually doing it. and that means i'm hella out of practice with my art.

    my sensory issues mostly involve food. that means i'm not able to handle food service jobs, which make up a significant percentage of the entry level ones. not all of them but enough to be discouraging.

    and i don't have that many spoons, energy-wise. like, i've an okay amount but that's mostly 'cause i try to optimize how i use them and listen to my body when it tells me it needs stuff.

    i might be able to work once i get my bachelor's degree but i can't really imagine it.

    i also have sciolosis as a physical issue, but i don't think it's particularly major.

    and i don't feel that motivated to work. like, i have a bit of a productivity complex, but i don't think i'd get pleasure from working for the sake of working. if my work was fun, then i'd get pleasure from it. i'd also be glad to be getting money from it, though right now, money isn't a concern for me. but i don't feel a drive to work for the sake of doing work.
     
    Last edited: Jul 18, 2016
    • Like x 2
  12. Acey

    Acey cool as an amphibian

    My issue with food service jobs--fast food, at least--is that they'd be extremely overwhelming for me. That's the one type of job I have yet to apply for, because I know I wouldn't be able to handle the fast pace.
     
  13. paladinkit

    paladinkit brave little paladin

    I could tune out a lot of the sensory overwhelm in fast food with my love of all of the tiny routines, and I was damn good at remembering, sticking to, and streamlining routines, so management liked me quite a bit. Coworkers who wanted to fuck around and skip steps hated me, though, and sensory overwhelm was still a thing, and oh tiny gods the amount of repetitive motions involved were murder on my nerve damage. I actually still have a scar from working at McDonald's too - workplace injuries in general were incredibly common and very much brushed off.
     
  14. albedo

    albedo metasperg

    I've... been having a rough time with this. I had to drop to 80% time at work, because I can't routinely work full time and do ... y'know, fiddly minor stuff like "feeding myself" and "showering". I've actually fallen off that bandwagon again, and been subsisting a lot on pizza and poptarts, which makes me feel gross and lazy, but I just... I got nothing. I've been laying around doing basically nothing all weekend, because I'm just worn out, and I really wanted to go out and be social today but I couldn't bear the thought.

    My parents don't get it, a lot of friends don't get it; they go "oh, I'm jealous, working part-time sounds so relaxing" and it's... it's not. I mean, it is, but I hate that I have to do things this way in order to vaguely semi-approximate being an actual human, and still crashing out and failing to do the dishes all week when I run out of spoons.

    It's just... everything is so exhausting, the pile of Stuff to Do gets longer and longer, and I don't know how to fix it. And I know I'd be so much happier and more productive if I didn't have to work, but I don't think that will ever happen.

    Muffled screeching, y'all. Sorry, I'm having a day already.
     
    • Like x 4
  15. Salted Earth

    Salted Earth DISOWNING DOESN'T STACK, ASSHOLE

    I'm sorry your list of Stuff to Do keeps getting longer, @albedo. :( It's a pretty awful feeling.
     
  16. albedo

    albedo metasperg

    Thank you. ._. I'm sorry for wandering in, when I am working, so it's... I don't know, a slightly different thing maybe? I feel like I may be derailing.
     
  17. electroTelegram

    electroTelegram Well-Known Member

    i admit i don't have the spoons to read the whole thread (i will try tomorrow) but i want to survive and i want to be happy and im scared because that's such a high bar. and admitting that scares me too. life is really scary right now and i don't know if that fear will ever go away. im just. scared.

    my body scares me. i try to love it but i don't trust it. i can't. i want a truce.
     
    Last edited: Jul 19, 2016
    • Like x 4
  18. albedo

    albedo metasperg

    tw for productivity shaming, I guess?



    Just. Okay yes, it is funny. But also... -muffled screaming-

    I am putting in all the effort I have, please don't shame me for having just had a trash bag on the floor for the last six months because I haven't had the spoons to scrub out my actual trashcan.


    ... is it okay to vent in here? /flops.
     
    Last edited: Jul 19, 2016
    • Like x 3
  19. TheMockingCrows

    TheMockingCrows Resident POTSie potato.

    Okay, so. A lot of my problem is sorting out what I 'CAN' do versus what I SHOULD do.

    For instance, I CAN drag my ass a half mile to get to the bus stop, but I feel like garbage at the .1 mark and am in serious pain by the end and need to rest for some time. The other symptoms don't go away till I'm home and laying down. It's why I don't go anywhere but once every few months and even then it's not a fun experience. I'm miserable and in pain and dizzy and nauseated the entire time I'm out. But I CAN walk that far. I use can more in a "can" sense. This is not functional walking at all.

    The question is SHOULD I. Answer - I shouldn't. I make myself sick any time I push that hard stubbornly, and if I tried to do that daily or with more regularity I'd finally join the fainter club or make my joints and muscles and tendons go on strike. One trip to the store with the spouse is a few days recovery minimum, longer if I sustain an injury or it starts up a flare of one of the conditions. This is why I need a wheelchair and hope to get one someday, but even when I get one I'll need to remember to take breaks and not push that haard.

    But the fact that if I push myself I can go further and 'do' more makes my brain think I can actually function perfectly most of the time and I'm just being lazy, till I hit the wall and remember that's just being self destructive. For some reason that lesson never sticks and I'm trying to find ways to MAKE it stick so I stop acting like a mother hitting a light bulb. It's ingrained in me to push to my furthest, even if I shouldn't, because I 'can'. If I'm not driving myself to destruction my brain says I'm not working hard enough or trying hard enough, and I need that to stop because I think a lot of that is what's feeding my productivity doctrine gremlins.

    eta: the nausea and dizziness is by a heart rate that can go from 80 laying down, to 130 standing upright and still, to 180 if I dare to carry a purse with more than a wallet inside of it.
     
    Last edited: Jul 19, 2016
    • Like x 3
  20. paladinkit

    paladinkit brave little paladin

    I'm inclined to say vent under spoilers, in case someone is having a more fragile brain day. But venting is still welcome!
     
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