Bleak House

Having a horrible time.

My body has broken.  I’ve now got a formal EDS-3 diagnosis, and POTS and secondary fibro.  I spent the entirety of my student loan on my new power chair, he’s great, but I’m so so disabled now.  Right now I don’t have the energy to move to get a drink of water.  I’ve not showered in about a week, I will pass out and I don’t have the energy to even lift my arms at all, let alone try and stand up.  I’m dizzy and hungry and I’ve no food in the house and no money til tomorrow.  I have missed so much uni.  So much.  I’m so scared.

My head is in a better place.  I’m probably a healthy weight, or not far from, and I’m okay with that.  Generally, I’m happier.  I’ve learnt how to socialise normally, and I’m quite happy to do so.  I hate my body as much as I ever have, though, only I hate the amount of pain it gives me, the lack of energy I have, and the lack of strength to hold my joints together.  I hate it.  I’m bitter, too – it’s happened so fast, but it’s never going to improve and will actually just keep getting worse.  I can’t go around London because the Tubes really aren’t accessible, most of them.  Can’t go to the beach (couldn’t get chair there, then it wouldn’t work on the sand).  Probably won’t ever leave the UK again.  At this rate I’m not going to get my degree.  I can’t even sit in a regular chair without being in unbearable, agonising pain.

I hate the fact that I worked my ass off to get to a better place with my mental health, and yet I’m more limited than ever.  My future seems bleak and empty, and there’s nothing I can do to influence it.

Don’t get me wrong, I’m happier in myself, I have really good friends, I have a lot of understanding people who really do support me, and I feel more wanted and loved than I ever have in my life before.

It’s just, this isn’t how it was meant to be.