#flesh prison problems

[worstcasescenariolullaby]

Hello, friends! So for those of us in the spoonie community, dealing with doctors and just trying to get a diagnosis is usually a generally hellish experience. I’m trying to raise awareness so that people feel less alone and maybe we can even get some policies changed! I made a google form to start out, and if you’re chronically ill and have a few minutes, I’d really appreciate it if you took it💕 It shouldn’t take too long and all of the questions are optional, plus it gives you an opportunity to complain about our healthcare system! Also please reblog if you can! Thanks loves :)

Have you had issues getting a proper diagnosis?

Hello and thanks for clicking on this! I created this survey to see how many people have had issues with the healthcare system. I know mysel

(Sorry if there are any typos, my brain doesn’t work)

[lloke]

Flesh prison update: a few years ago I started having chronic back pain, none of the attempted treatments did anything except in one case make it worse, eventually they put me on a painkiller and I’m not sure if it’s because of the drug or not but the pain has very gradually gotten better over time, I’m rarely bothered by it now.

Now I have knee pain instead 😃

[lloke]

Just received this email from ResearchMatch:

I whine about my pain in my diary and sometimes on tumblr, I think that's the modern secular equivalent of a lament.

[lloke]

More chronic pain whining: it's annoying how doctors will keep asking questions like "Does this pain prevent you from doing any normal life activities?" with the implication that if it doesn't then it can't be a real problem; but if I say that there are certain things I avoid doing because of the pain and I need to spend a certain amount of time lying down to rest my back etc (to try and convince them that it is somewhat "bad"), they're just like "Well clearly the problem here is that you're a lazy slob who's lying around doing nothing all day, just get off your ass and exercise more and I'm sure you'll be fine!" But if I say that I'm just as active as before and I do exercise and do all that other shit but the pain is still there, then they're just like "Well if you're able to do all that stuff then clearly the pain can't be that bad, so what are you complaining about?"

[lloke]

I have a coworker who sits across from me who always says "bless you" when anybody sneezes, and it's made me so self-conscious about sneezing -- I just don't like having attention drawn to an involuntary body function like that, especially since it's made me aware that I seem to sneeze more frequently than other people. This bothers me so much that after much trial and error I've actually figured out a way to successfully suppress a sneeze most of the time: when you feel one coming on, wait until the last second as you're inhaling -- the "ah" part -- and then pinch your nose. The timing is important, if you hold your nose too soon it won't work.

(I also get hiccups pretty frequently and find them embarrassing too, but in this case I've found an infallible cure: holding my breath and taking sips of water until I can't hold it anymore works for me 100% of the time.)

[lloke]

Sometimes I worry that my skepticism and pessimism are making my life worse in definite material ways because the placebo effect and "the power of positive thinking" really do have some material beneficial effects but I'm unable to access them because I'm unable to really believe in anything, especially anything hopeful. E.g. if the chronic back pain I'm currently experiencing is really psychosomatic as some doctors would argue then I'm probably fucked. My brain will never be able to stop expecting the pain to be there, so it will never stop being there. I mean it really says a lot that I respond to the suggestion "maybe the pain is only there because you expect it to be there" with "well, that just makes me expect it to be there EVEN MORE". The placebo effect won't work on me because I don't believe that I can believe that it will work. Meta-pessimism, yay.

[beerkc]

So now that I've run out of percocet

The next thing my doctor gave me was CHERRY FLAVORED LIQUID HYDROCODONE Not great bob