So a little update;
I have been diagnosed with a rare connective tissue disorder called "Ehlers Danlos Syndrome".
It affects your connective tissue as in tendons, ligaments, your skin, your internal organs. It is progressive some what(because your tendons/ligaments will continue to detonate and stretch over time) and it basically causes your tendons,ligaments to be too stretchy and not do their job of stabilising your joints, and so they tear and instead your muscles have to do all the work. It is in the hyper mobility spectrum disorder, but i'm no longer hyper mobile...i'm stiff as a rock. My fingers are bendy, my knee subluxates, my hip too and basically every joint...but I'm stiff because the muscles have to stabilise everything.
It is so confusing because it involved so many bodily functions. Not only that, but there is a big neurological component in it. Why? for a few reasons:
- My vertebras are hyper mobile so it causes nerve compression through dynamic movement and bad posture.
- Because of the lack of stability I have ridiculous amount of trigger points that compress on adjacent structures.
- I don't fucking know.
Also there is never-ending tendonitis. Injuries apparently don't fucking heal.
It involves sleep...apparently I have sleep apnea because my airway spasms during the night.
It involved your stomach, so I don't absorb nutrients too well.
And you lose tons of muscle and strength through disuse because of repetitive injuries. And when you try to strengthen your body it feels impossible.
I bought nordic poles to help me walk better because my legs can not hold my weight anymore. I have to get stronger. My injuries affect both sides all the time. My new and 'annoying one is the achilles. It fucks up with my walking.
There is constant dizziness, vertigo, headache that surrounds me and friggin jaw dysfunction and constant facial muscle/nerve pain. There is a lot more, but it does not matter.
Anyways, I was hospitalised for a month in rehab and I decided to ask to be released. They didn't know how to deal with my problems and felt like they made my lower body worse. I kinda regret this decision because I have no idea what to do next as i'm alone and need to find healthcare professionals to help me.
I need 3-4 times a week physio and hydro. It is costly and I'm not mobile right now.
I'm looking for an alternative...tryign to find a different hospital to be hospitalised in perhaps, or maybe a day rehab where you come in the morning and go in the afternoon. The issue is that it is very hard for me to do.
Argh, I feel overwhelmed and I have no strength to handle it. Although the hospital may not be the best option for someone who can take care of himself?