I wrote on Facebook yesterday that I had given up. That I was done. That I may explain that statement in a blog post. This is not that blog post. This is another one.
Something unrelated happened yesterday that I want to talk about. Just to explain what it’s like I guess. I was going to ask for advice on Facebook, but decided I didn’t want a bunch of advice that didn’t take into account my personal circumstances, so decided against it. There is no advice. I know what I should do. I also know that what I should do, and what I CAN do, are two completely different things. And given how helpless I feel right now – at least writing about it might help.
My hips have been “out” for months now. By “out”, I mean, they haven’t been fully dislocated, but they’ve been something else. I say that they have been partially dislocated, but even that might not be entirely correct. I’m not sure. I don’t have a medical team to tell me. I am doing this largely on my own. All I know is that nine months ago, I could spread my hips wide enough to insert a tampon, and now I can’t. I know that I can’t walk properly. I know that my hip joints grind a bit when I move. And every now and then, they DO nearly dislocate fully, scaring the bejesus out of me!
Which is what happened last night.
I was sitting on the lounge, watching TV, minding my own business, and all I did was use my arms to lift my body up so I could reposition my legs under me. And WHAM! My right hip slipped clean out. I screamed, BJ ran, and together we managed to maneuver my body back onto the lounge with my hip joint intact. And I have been very VERY careful not to move too drastically since then.
The thing is though, when your hips dislocate (even partially), you really should go to hospital. There are nerves that can get stuck. There are probably other concerns as well, but I choose to remain ignorant of them, because there’s no point scaring myself any further. I can’t just get up and go to hospital. Can’t be done. Not every time this shit happens. I’d never leave hospital (my hips aren’t the only joints I have to worry about). Screw that. Not to mention we simply don’t have the support we need (i.e. someone to look after the boys at 2am in the morning). Even if I went to hospital, they would do an X-ray, which isn’t going to show anything, and send me home. After that happens a few times, they are going to write in my file that I am a hypochondriac, and then when something really bad does happen, they’ll ignore me. And because Ehlers Danlos Syndrome can cause all sorts of internal organ problems, that could be lethally bad.
So here I sit, gently, watching out for signs of tingling in my legs or toes, or hips that feel warm inside or are warm to the touch. I have all of those symptoms. And still I can’t go to hospital. I was going to ask if I should, but I already know the answer. Of course I should. In a perfect world. In a world where I can get the family support I need, or a world where I will be believed by medical professionals no matter their limited knowledge of Ehlers Danlos Syndrome and how it presents (i.e. mostly it doesn’t, even when something really is wrong).
I can’t go online for advice. The usual advice is “demand this test” by people in the United States who have private health insurance. Certainly few people understand the public system in Queensland enough to understand how underfunded it is, and how hard it is to get any help at all. And even if people understand that, they usually don’t understand how difficult it is for ME to ask for help, after all I’ve been through in the past. They don’t understand Autism and how that affects communication and how that affects health care. Even should I go to hospital, I wouldn’t know what to say, or how to say it. Writing is easy. Talking is hard. I’m really pathetic at talking. I simultaneously say too much and too little.
So here I sit. Actually watching for signs that I am losing my legs. Blackened toes. Loss of all feeling. Huge neon signs. I don’t have those yet. It’s been twelve hours, so I will probably be fine. The other symptoms are probably just my body healing from the trauma. Nothing to worry about.
I can be surrounded by people and still feel so alone *cry*