This week has been ok

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.

Shit I am sick of hearing

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.