Alrighty then... let's talk about something I've avoided to think about for some time now.
(this is a post mainly for me actually, to keep track of shit)
So, my EDS had gradually gotten worse. It's more aggressive now than it was before. It... "grows" faster than it used to.
My knees got inflamed actually. But I had to figure that out myself because doctors can't -_-
Everything that hurts, everything that goes wrong...all of it, I have to figure out for myself.
There's no doctor there to have my back. To keep my spirits high and give me hope when shit looks dark. There's no doctor taking tests, checking how I feel or trying to figure out what's wrong.
And there never will be.
Cause here's in sweden, EDS is still a rather "unknown" disease.
Recently my knees have gotten in real bad shape. So bad that I have to start thinking about alternative things. Like braces. Braces for my joints in general really.
Like fingers, knees and wrists... I've already decided to buy a waist trainer so my waist will have a constant support. It won't weaken the muscles like the doctors always say. Cause a waist trainer unlike a corset will actually force the muscles in my abdomen to work out. It sounds great in theory anyway.
Knee braces on the other hand....................... expensive. As fuck. Not something I can just pull out of my ass and use so everything will be good. Nope. Gotta save up for those. And save up a lot.
I can, through a doctor get referred to the orthopedics and get knee braces there custom made for my knees, which will save me a whole fuckton of money. So that's the option I'm going with right now.
Buuuuuuuuuuuuut, it takes time. Obviously.
My fingers are good for now. But in the future I will need something like this:
Yeah... the finger braces would cost thousands of dollars. So I won't be getting those anytime soon.
They're ridiculously expensive even though they're technically just a bunch of rings. Which leads me to think I could make these myself (or have someone else make them for me) But I think I've mentioned this before.
SOmething else that getting worse with the disease is my memory. My memory is getting pretty crappy. I remember things I've forced myself to remember by instinct. Routines and natural things. But tell me to go get you something, I'll come back nomming on a cookie having no clue why you're looking at me like I'm a dick. I manage to survive though. I pretend to be an idiot so people will get off my back about shit that I don't have the energy to deal with.
At work I pretend to be lazy, so I don't have to admit that I haven't done certain things because I'm in pain. Cause I'm so scared that one day I won't be needed anymore.... because they'll be afraid that I'm going to be in too much pain. I don't need pity all the fucking time. It makes me feel worse than I normally do.
My speech and vision.... well, that's affected by how tired I am. Like most people I guess lol
But I'm getting very VERY tired these days. Literally can't keep my eyes open. It's extremely irritating and annoying.
Good things... well, I think I've managed to change at least a small part of the positions that I sleep in. I think. I don't bend my wrist backwards anymore (I'm not entirely sure though, but I haven't caught myself doing that recently anyway) so that's good.
Unfortunately I always wake up like 10 times every night due to changing my sleeping position. It's painful once the body tries to relax so it forces me to wake up every time I get relaxed.
I guess that's still one of my biggest issues. The fact that every time I try to relax, I tense up and almost stop breathing. It's like my body get's such a shock from the pain when I try to relax that it get's so scared of relaxing that it forces me to stay alert. Even when I'm exhausted.
I've woken myself up sooooo many times cause of pain so you have no idea.
But, I'm still stuck on the same kinds of "valium" (different brand) though I would've prefered a stronger dose.
Fun fact: If you suffer from EDS, your more resistant to drugs.
Painkillers and benzo's don't hit me as hard as normal people. I almost have to abuse the shit out of it in order to force my body to relax so i finally get to sleep at least a few hours straight. Unfortunately I can only do that every once in a while. Quite rarely in other words -__- I only do it when my body and mind are so sleep deprived that they need it in order for me to not go insane or make me be angry and mean all the time.
I can get very angry and frustrated because of EDS. This is not how I used to be. It's still... a scary new side of me that I don't get along with.
But if I get enough sleep combined with painkillers, then it can be managed.
And now it's time for my benzo's and oxy's and say good night. Let's hope for at least a 3-4 hour night. *hope hope hope hope*
I'm on a higher depot dose of oxy's now so we'll see if they do the job. I doubt it though. The dose ainät high enough. But I'll play along if it makes the doc happy I guess, For now.
Luckily my handsome studmuffin gives me my medicine every morning so I can get up and get on with my life.