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A lot going on, but I'm getting nowhere


#1

I’m not entirely sure where to start. I’m 40 years old and there’s a lot of backstory. I’m not sure how much context you really need. I’ve also got a bunch of different things weighing on my mind.

I guess the short version is that my immune system has been trying to kill me for my whole life. I’m not looking for medical advice. I’ve been to every doctor who could conceivably help and tried everything that was at all likely to do more good than harm. Where I am is the best we can do for now. But the upshot is that I’ve got a complicated tangle of sleeping disorders and other medical issues that keeps me from being able to live a normal life. Even with painkillers I’m never not in pain somewhere and I can never predict what will be hurting and how much. I’m constantly tired and never more than a short step away from the kind of critical exhaustion that leads to mental breakdowns. It’s hard to concentrate on anything, and attempting to do so wears me out frighteningly fast. When I went on medical leave from college, I was taking the lightest courseload possible, sleeping literally 12 hours a day, and doing absolutely nothing that wasn’t necessary. Within a few weeks, I was so exhausted I was in the same mental condition as I’d been when they took my wisdom teeth out and gave me enough anesthetic so that I was only vaguely aware of what was happening within a couple of feet, but still awake enough that I could give one-word answers to simple questions. Also, I’m on a 25 hour day (as a rough average), which means my waking hours change from week to week. I’ve got a few other things going on, too. To the point that the state agency that specifically exists to find gainful employment for people with severe disabilities (training them up, finding employers who can be flexible, providing accommodations, etc.) told me that I’m beyond their help. I’ve got too many limitations in too many directions for them to be able to find anything I can do, even with help.

So I haven’t really worked a day in my life. I did some tutoring in high school. I taught calculus for a semester in college. Now I can’t think my way through material that I used to teach. I’ve just lost too much processing power. Physically, I can sometimes walk a few miles, on a good day. But on bad days (which are not infrequent) I can hardly even sit up. I spend a lot of time with my head spinning from pure exhaustion. Sometimes days or weeks at a time. I make plans to do projects and I just physically can’t follow through.

My family is trying to get me established. They just bought an apartment for me in the same building as my big sister. Which just makes me feel guilty. Like I’m a parasite. I’m not productive, and I’m just living off family resources. I’m lucky they can afford me. Most families couldn’t. And that’s a bit more guilt right there. Even if it’s not my fault and my family adamantly doesn’t see it that way, it wears on me.

I feel like a useless failure.

Oh, yes. And I’ve had suicidal thoughts and urgings since I was in high school. I’ve mostly put them off because that decision is final and irrevocable. It puts an end to all possibilities. And I can’t do that until I’m absolutely positive. (I also know it would hurt the people I love most.) But it just seems like my life is empty and hopeless. I do my best not to dwell on it. (Twitch Music has helped a lot with that, especially when I’ve been stuck on the couch, with my head spinning, unable to focus on anything more taxing than music, including stupid TV shows. But it’s a way to have company on my own terms, as I’m up to it.)

But now things are going to change. I’ll have to do more to take care of myself, and I don’t know that I’ll be able to do it. I can rely on my sister for support… except that, for all her love and kindness, she is painfully ignorant of the realities of living with disabilities and she doesn’t want to be burdened with the details of my everyday struggles when she’s got more than enough to deal with in her own life.

Last year, for the first time, I had a girlfriend for a few months. It turned out that our needs were too different and we parted amicably, but it opened up a part of my heart I’d left closed for a long time. I’d been focused on trying to fix my body and find a way to have a life before I was willing to even look to try dating. So now I’ve still got no life and a broken body and a mind that’s scattered and I’m never more than one bad night’s sleep away from suicidal depression and it’s only a short step from there to a mental breakdown from pure lack of sleep… but on top of that I’m lonely. And I keep seeing people I like and respect who also happen to be female and single. And, as a superficial bonus, beautiful. I can tell myself why it wouldn’t work. I live too far away from her. I’m at least a few years too old for her. There are good practical reasons we wouldn’t be compatible. And that’s without getting into my medical limitations. Hard to build a life with someone when your sleep/wake schedule is a mess and you don’t know from day to day whether you’ll be able to follow through on plans. But it doesn’t keep from wishing and pining, more for the idea of having a loving relationship than for any one particular woman, even if there are a few who tug at my heart more than most.

I don’t know what to do about any of it. I’m going to try city life. See if having opportunities right outside my door at all hours will help. Being closer to my nieces and nephews (the best part of my life) will be good. But I still feel lost and worthless. Going to give voice acting a shot. Just because when you can’t move and you can’t think, your voice is about all you’ve got left. (Except that I spend a lot of time too tired to speak out loud. And also I had to have throat surgery for one of my sleeping disorders and now I’m finding there are a bunch of sounds I physically can’t make. But still, people tell me I have a nice voice and a pro voice actor told me he honestly thinks my readings of scripts are good enough to make it.) I’d just need to find work from home where it doesn’t matter when, exactly, I do the recording. I don’t know. It seems a long shot. But it also seems like the only chance I’ve got. We’ll see.

I’m just so tired of it all.

I try to put it out of my mind and just go day to day, but that itself is disheartening.

Meantime, I’ve had something else buzzing around my head. It shouldn’t be a big deal, really, but it’s been in the back of my mind and I haven’t been able to get a grasp on what to do about it.

See, someone I know said something… let’s say borderline racist. If it was clearly racist, I’d know what to do. If it was out of nowhere, I’d know what to do. But… I can see where it’s coming from. I can see that there’s legitimate reason to be personally angry at some people. it just seems like that anger is spilling over into millions of people who don’t deserve it. It’s not clear that that’s the case, but it looks an awful lot like it. Which is sadly not uncommon. It’s still enough to make me deeply uncomfortable. It’s kind of personal to me, too, because even though it’s not targeted against me, it’s the same kind of attitude that’s driven the persecution of my people that nearly wiped out my family in my grandparents’ generation. (And also prompted repeated vandalism of my elementary school and a lot of other things that I and my family have personally experienced.) So I’m pretty sensitive about seeing this sort of thing happen to others, even when it’s just words. Because that’s where it starts. But it’s not something I can just casually bring up. And it’s a very sensitive subject all around. So instead I’m just feeling confused and uncomfortable.

I don’t know. I’m just so worn out. And I don’t really know what I need. Platitudes won’t get me anywhere. But I’ve tried everything practical I can think of, and I certainly don’t need to be told to go try this herbal remedy or fad diet or whatever. Maybe it’s not even worth posting this. But I guess it can’t hurt. I hate feeling stuck like this.


Broken (but apparently that's too short of a title.)
#2

That’s hell in a handbasket for sure. Sounds like you are being spread too thin due to everything going on in your life.

We’ll start with the easiest one: being bothered by casual racism is more than okay. A lot of people don’t realize they are being casually racist because they are just repeating something they heard, if you want to bring it up then just the next time they say something casually racist - explain why that bothers you and you would prefer if they didn’t say stuff like that. Educate them on the things they are ignorant.

I know you feel like a burden but people wouldn’t do the things they do if they didn’t care about you. All you can do is make things easier on the people in your life by offering to help them with things you are capable of when you can. Whether that be cleaning for them, cooking, watching your nieces and nephews, etc.

Everything else seems to stem from your medical issues. I can’t really give you any advice on that side. I’m sure you have tried sleep studies and every kind of “cure” for insomnia. Melatonin can only help people with minor cases and I don’t know which sleep meds you may have tried. I think if you were able to get on some type of sleep schedule that you will start feeling a lot better and be able to grasp things more clearly. I don’t know how often you work out or whether doing things specifically to tire you out even work or if you are just left further exhausted. I dunno. I am not in your shoes or a doctor. I just hope you have talked to multiple doctors and specialists because one or two doctors can’t know everything.

I hope everything works out for you and you can figure things out.


#3

Hey @WearsHats,

You are not alone in this fight.

I know how it feels to be stuck- to be trying but not getting any farther or just feeling like you go backwards.

Just know we all believe in you and we are all here for you no matter what.

When a lot of stuff is going on it’s hard to feel ok- it’s hard to feel like we are getting somewhere. Small steps are key- embrace those small victories, one day they will add up.

It can become apparent that you have accomplished a lot even though you have felt like you haven’t been going anywhere.

Hold fast my friend.

With love,
Lyss (ur old pal Blurryface)


#4

Thanks.

I’m still not quite sure how to handle this specific situation. I don’t think it’ll come up again. Or maybe it will. I guess we’ll see.

I know friends and family care and they don’t see me as a burden. But it doesn’t keep me from feeling like it. I do help when I can. But it’s not much. (Especially now that the kids are older and mostly take care of themselves.)

Yeah, I’ve had a sleep study pretty much every year since the mid-90s, and I’ve been to more specialists in more places than I care to count. I’ve had multiple sleep doctors tell me that I’ve tried everything in the book and they can’t do anything more to help. A steady sleep/wake schedule would be nice, but unfortunately it’s just not physically possible for me. (“Non-24” or “free running sleep” is one of my half dozen or so sleeping disorders, and while there are several treatment options none of them has a better than 10% success rate. None of them helped me.)

I appreciate the support and good wishes.


#5

Thanks, Lyss. I try to think of that. But when I look at the bigger picture… I went on medical leave from college in 2001. I’ve tried a couple of things since then to be productive (including opening a business to employ other people) but nothing worked out.

I’ve managed to give support to friends and family and I’ve helped here and there with mys sisters’ kids. But it really feels like, in terms of life goals and being productive, I haven’t gotten anywhere in nearly 2 decades. I don’t know how to handle that other than trying not to dwell.


#6

Well, four months later, and I’m worse than before. I had a really busy Fall with some good stuff in it. Made it to TwitchCon, met a bunch of awesome people. Had an amazing weekend in LA where I got to spend an afternoon working with top voice talent. Had time to rest and recover from all that and more… And then the bottom fell out again.

My sleep is out of whack again. It happens every year or so. Sleep quality goes down. I always live on the edge of critical exhaustion, so any little drop is enough to severely impact functionality. Most of the last two months has been spent dealing with that. Too woozy to sit up for hours at a time. Too tired to focus on or remember anything. Ears ringing. Pain worse. I had to get out Grandma’s old walker to help me get around the kitchen.

In the past, it’s mostly been a matter of getting a sleep study done so we can tweak the settings on my BiPAP machine, looking for a window where the pressure is high enough to prevent obstructive events but not so high that I’m having too many centrals. The window moves around, but once we find it again, I can get back on my feet.

Except that’s not how it happened this time. I got the study done. I changed the settings. It helped a bit. But I’m nowhere near functional and I don’t know if there’s anything more that can be done. I’ve got a good doctor who actually listens to me and is willing to work by email. (Which is huge. I don’t have to go in for appointments. I don’t have to speak out loud or respond in real time - which can be very mentally and physically taxing. I don’t have to wait for business hours when I’m nocturnal.) But neither of us seems to have any idea what else to do.

I keep up with a few friends, mostly with brief check-ins, but that’s about all I can manage. I’m lonely, but I don’t have the strength or focus to be social, even online. And I’m losing interest in the things that have helped keep me going. I’m losing touch with people and communities because I just can’t keep up and anyway I’m feeling distant and numb.

I just can’t see a viable path forward from here. Is this to be the rest of my life? I’ve gotten pretty much nowhere since I left school in 2001. My niece was born around then, and she’s applying to colleges for next year. I’m over the hill. It doesn’t get better from here. So, what? I just keep treading water for a few more decades, living off my family’s generosity, and that’s it? This isn’t a life.

I don’t know what to do.