They have increased my prednisone and my cellcept, both of which can cause insomnia. I have gone for 3 days without sleep a few times now, but overall, remaining rather sober and productive, all things considered. It’s been a pretty slow couple of weeks for work but I have other things to do and am keeping busy, for the most part. I’ve been meaning to update more but haven’t had a lot to say.
First and foremost, I am sick of people saying if stuff sucks, you can just go and change it. I can’t make my adrenal glands start working again, and the majority of my problems are caused either by this or by the medications for this. I am very sick of people saying you just need a positive attitude. If you’re in pain from the minute you wake up until you go to sleep at night, it can be somewhat challenging to be cheerful all the time.
That being said, I am also sick of people telling me I probably complain to people all the time. I can’t remember the last time I complained, out loud, to another person. I avoid human contact if I am not in a good enough mood. And then, at the same time, people tell me I should talk to people about myself and then I’d feel better. [*facepalm*] In any case, I don’t talk to people about myself much at all and have very much crawled up my own asshole and died, to paraphrase Vonnegut.
I’ve also had numerous people tell me that I can’t possibly be suffering from things like impaired cognition, poor executive functions, short term memory loss, and attention problems, despite these being listed as side effects or symptoms from my meds and health problems. I’ve done things like making lists, but writing things down is a poor substitute for being able to think clearly and remember things. My former therapist suggested maybe I would benefit from ADHD-type meds, but I have not tried this or discussed it with my regular doctor yet, and I have enough trouble as it is remembering to take the pills I’m on and dealing with the side-effects of those.
I also think about parallels with dealing with grief. People often say that it is work, that you need to do it and get through it rather than repress it and remain in denial. That tends to be how I think about negative feelings in general: that they are often valid feelings and maybe you shouldn’t repress them 100% of the time. If things kind of suck, I think it’s probably ok to acknowledge that they suck now and then.
Anyway, I don’t think my current situation is the result of mental illness alone. I think I coped with things quite well before getting seriously physically ill (adrenal crisis can kill you quit rapidly and I’ve come close more than once). If I am sometimes in a shitty mood, it is because I am sick and I do not see a way out. I only see things getting worse. I’m subscribed to various groups for adrenal and pituitary-related diseases, and am bombarded with “in memoriam” posts about people with the same and similar illnesses dropping dead before they are 45. That and the medical literature also makes it seem like I don’t have a very long life expectancy, and that all that remains of that life expectancy is going to be miserable most of the time.
Anyway, though I am sure positivity has its uses, people telling me to deny that anything is wrong with me physically or that my meds have a very negative psychological affect does make me want to say “fuck your positivity.” Unless your life is perfect, you probably can’t be positive all the time. I have seen my entire life turn to shit and all my dreams and goals in life as well as my health crumble within the past 10 years.
I used to at least enjoy things like writing or painting, but the brainfog has impaired any sort of creative urges to the point where I find myself unable to write, no matter how much I push myself. Some might consider this unimportant, but it tends to mean that there is absolutely nothing in life that I am able to enjoy or feel good about, so I consider it a great loss. I didn’t even let people see or read most of my shit, I did it for myself, but I enjoyed it, and I don’t have that anymore, either.
It is possible that someday in the distant future, I will be able to get off of the corticosteroids. The endocrinologist said it will, at the very least, take years. I’ve also read that the negative side effects of long term corticosteroid use can persist for years after stopping the meds, and it’s quite possible that 10 years of high doses of steroids has really fucked up my insides and lessened my life expectancy, and yes, that bums me out sometimes. And I feel like it’s ok to be bummed out about that sometimes, especially since I only mention it on the internet and no one is forced to read it.
I’ve been having a bad time with my eczema, and have made the doctor aware of this 3 weeks ago. I’m still fighting to get a new prescription, which I’ve been asking for for a week now, and without which I will go into adrenal crisis and definitely end up admitted to the hospital. I’m currently waiting for my GP’s office to open so I can ask them for a skin scraping test, which is only one of the hoops I need to jump through to get my goddamn refill. You’d think these were fun drugs, with all the shit I’m having to go through to get them, but they sure aren’t.
In any case, I’ve been in a constant state of abject terror for a week and a half now, partly from the nightmarishness of being in pain all the time, can’t sleep, can’t concentrate, etc., and partly from the fear of running out of pills, which don’t just help the skin, they actually keep me alive. I have enough for 2 more days. Hopefully, I can get an emergency appt with the GP and they will do this test (no idea if they do that there, or if it can come back the same day), then call the dermatologist and beg for a refill again. If I don’t get a refill, I will have no choice but to go to the ER over the weekend and get pumped full of painkillers and IV steroids. I’ve told them this. Everybody knows this. I don’t know why they can’t just give me the Rx and then have some tests, because I am tremendously stressed out. I know in the back of my mind that someone somewhere will do whatever to keep me from going into adrenal crisis, but I still get stressed out without the pills and I know it’s all been a lot harder than it should be. Considering the adrenal insufficiency, I feel like I should never, ever be this close to running out, for reasons of safety and because I lose my mind when it happens.
Doing away with my personal Facebook account has been great. I feel like I’ve eliminated a lot of chaos, bullshit, and hostility from my life. I probably spent too much money this week, but I also made a lot more money last week, so it all balances out in the end.
I ended up getting a box set of Metallica’s entire discography. I’m not sure I’ll ever even listen to any of the stuff that came after Load, but it was cheap and used and maybe I’ve finally forgiven them for disappointing me in 1995 (by releasing Load). I also got 3 more Scott Walker CDs, including the one he did with Sunn O))), which I haven’t heard but it seemed like a good idea at the time. (Still waiting for those to come in the mail.) I got 3 of The Stooges’ albums, too, because I only have their stuff on vinyl. Some of it was really cheap new on Amazon. And a 5-CD Roxy Music set. I have mixed feelings about Roxy Music, but it was cheap, too. I think that’s it.
On the one hand, it’s overspending; on the other, some of it’s replacing stuff I used to have an sold, like some of the Scott Walker and Stooges stuff. I got a used 6-DVD box set of Werner Herzog films also. There are several of those, I think there are 2 with documentaries, then there is one of films with Klaus Kinski (this is the one I bought) and another 6-DVD set of non-Kinski Herzog films.
It took me forever to get around to watching Grizzly Man, I don’t know why. I’m not sure I’d watch some of his documentaries again. I loved the On Death Row series and Into the Abyss was decent, too. I’ve been trying to talk other people into watching From One Moment to the Next every time people mention texting and driving. It’s on YouTube, last I checked, and it’s terribly grim. I was really high when I first watched On Death Row (there are 4 episodes) and I probably like it better due to sympathizing with Herzog’s views on capital punishment.
Anyway, not much going on here. Buying things, watching movies, listening to music, mostly.
Things are a bit calmer after deactivating my Facebook, but that still doesn’t solve the larger problem that I am in a situation that I cannot cope with. The corticosteroids exacerbate the bipolar disorder to the point where I have trouble coping from one minute to the next, and yet, there is no easy solution, because (1) no other drugs help with the skin, and (2) the adrenal insufficiency means I can’t stop taking the ‘roids, anyway.
Additionally, I’m back at a point where time seems to be moving very quickly. I blink and suddenly 2 weeks have passed. I have trouble making necessary phone calls, making doctor appointments, filling out paperwork. And I have trouble communicating all this to doctors.
I deactivated my Facebook again, then reactivated and deactivated again. It’s not that I hate everything about social media, but some days I just don’t want anyone to contact me and I don’t want to know what other people are thinking or doing. I think I just miss the times in the past when you could turn it all off. If you came home from school, work, or a friend’s house, then you were able to move on and focus on other things. These days, I’m trying to do my work and Chrome is displaying Facebook notifications. Yes, I figured out how to turn that off, but it’s only a small part of the problem.
Here is the problem, essentially: I don’t want to be available 24 hours a day, 7 days a week. I don’t want people to send me private messages and then get mad when I don’t respond right away. Sometimes, I don’t want to know every single though passing through everyone’s mind. I often wish I could just move to a cave in the woods for a while and experience something like peace and quiet and being left alone.
My work doesn’t help much, either because I’m a freelancer. I am constantly either working, or looking for more work, checking to see if anyone’s contacted me about work, etc. If I wake up in the middle of the night with a dry mouth, I check for work before getting a glass of water. I seem unable to get away from it. I often don’t leave the house because that could mean missing out on possible work.
I’ve been so stressed out that I’m once again having trouble doing things like opening my mail and making necessary phone calls, such as for doctor appointments. I could go back into therapy, but I am too pessimistic to do so. I don’t have any energy. I feel like if I go back, that’s just one more thing I will need to make time for, and that it will likely result in just going around in circles for years like it did last time. For now, I just want to take a break from communicating with people at all.
People tend to say to focus on positive things, but this is problematic when you can’t come up with any positive things to focus on. Everything is completely fucked up. I am legitimately struggling to find anything positive to focus on. In addition to that, I do also have the feeling that negative emotions are normal in response to negative circumstances, and I don’t think denial is necessarily a good thing, either.
I kind of feel like my personality and self-awareness were completely out to lunch for several years there. There was nothing other than denial/lack of awareness. That wasn’t good either, but there was no sense of struggling.
Getting out of the house doesn’t help; it just further fucks up my sense of time and keeps me from doing the things I need to do, like dealing with health problems and making money. It causes me great anxiety and stress. My sense of time is still quite abnormal and I have trouble getting even a few useful things done in a day. I force myself to do things now, like drawing and attempting to get a somewhat decent portfolio put together. I make myself play piano/guitar/violin to focus on something and to pass some of the time in a somewhat meaningful way. On occasion, I drink too much and spend too much money. I think I’ve bought 3 DVDs, a few records, and about 20 CDs this week.
I am not seeing anything getting better in the future, and that fucks me up a bit, I guess.
Suddenly I’ve just lost the urge to communicate with people online or off, so I am probably going to be absent in various places. I am trying to spend some time on my own forum, and that’s about it. I’ve mainly been updating my FB, which I reactivated, when I have new projects finished or things for sale on my etsy. I just sort of don’t give a shit and don’t want to talk to anyone.
This isn’t a bad thing; I’ve been getting a lot of things done; physical things, quantifiable progress being made. This has been a much better week than the weeks prior to this.
Some things I notice are that I am overly critical of my own work, though, and all human contact tends to annoy and frustrate me, except in small quantities. People just seem so shitty to each other and I guess I don’t feel the urge to be shitty to people all the time. People also seem very moody and unpredictable in a bad way.
I don’t think I’ve ever taken out anger on another person toward whom it wasn’t directed, and it seems that many or most other people do that all the time. They wake up in a bad mood and are shitty to everybody, no matter what, no matter how those people treat them. I can’t do that, I’m not programmed that way, and I find it very upsetting. I figure the best thing I can do is cut off most or all contact with people, online and off, until I feel like I have gained a larger tolerance for everyone being a shithead all the time. I don’t even care if they’re a shithead to me or not, I feel the same when they’re unreasonable shitheads to other people. In many ways, I have a very low opinion of humanity.
I’m sure there are many wonderful people out there, but they are very hard to find, and I don’t have the time or energy to do so.
I deactivated my Facebook again; it’s just too much noise. Sick of seeing all the bullshit. I am trying to cultivate some peace and quiet.
The last month or so has been pretty bad and I just can’t deal with communicating with people right now.
It’s been a while, and I’ve had posts saved as drafts, but I haven’t actually posted anything.
One recurring thought that I had all the time while the meds were causing me more brainfog was that, when the fog cleared, I was going to have a very bad time. That is to say, what was sustaining me and allowing me to cope and not freak out was the fact that I was quite unaware of everything about my situation, didn’t care, absolutely didn’t give a shit about anything. And I was right! The brainfog cleared a bit and I had a very bad time, have been having a very bad time for the past 9 or 10 months.
On the one hand, typing about it (not talking, I don’t talk to people much) sounds like a good idea, but in reality, it only stresses me out a lot and I prefer to remain in a state of complete denial, going through the motions, trying not to think about anything too much.
In addition to that, I have a very low threshhold for human contact of any type, so being back on FB and forums and things stresses me out a lot, especially when too many people start sending me too many private messages and things. I can handle public forum posts, and PMs from some people, some of the time, but not very many people, very much of the time. I have turned off FB notifications for this reason, though I am still logging in when I have something to post (usually, new drawings and things like that). I will log in to put up a link to this.
Anyway, thinking stresses me out a lot, and people stress me out a lot, and I just feel like I’m constantly striving for an unattainable state of peace and quiet.