Breaking

Disability and illness

I feel like I’m breaking apart. I can’t sleep, I’m in pain 24/7 and I am super stressed about all the things I need to do, but have no energy for. 

Healthy people might think they know. ”I have no energy” means you can still do it, but you might have to force yourself. I literally have no energy. I can barely get up to go to the toilet or brush my teeth. I’m contemplating buying a chamber pot (thankfully they have smaller, plastic things with lids nowadays, so no ceramic open bowl thingy) but I can’t bring myself to do it. Sometimes in the mornings my body is not working, I literally can’t move. It’s super scary and weird, and I break it by just slowly starting to wiggle my toes and fingers and so on, but it takes time before I can get up and go to the toilet. So that’s when I feel the possible need for a…  potty. But I also feel that, when I’ve started to be able to move so much that I could get a potty out and pee, then I’m almost ready to go to the loo anyway. But on the other hand, it’s just gonna get worse. You know, winter is coming. And I don’t mean in the game of thrones’ kill/sex way, I mean as in I’m getting worse by the minute. 

I just feel it is so, so humiliating to have a chamber pot. A bed pan. A potty. I’m 27 years old. This should not be my problem. 

It took me about a year, if I remember correctly, to buy a walking stick. I realised that I needed one, but I couldn’t bring myself to it. By the time I got one, I already needed a wheelchair. The wheelchair was easier, cause by then I couldn’t get out without one, so I just saw it as a necessity. A help. But a chamber pot? Although, I don’t want to wait until the day I wet the bed… I could just get one and keep close by just in case. If tried to tell myself that for about a month or two now… 

This wasn’t supposed to be a post about chamber pots but that’s apparently where I am. And it sucks. It hurts so bad. I was supposed to start my last term of law school now, instead I’m contemplating buying chamber pots and trying to keep myself together. 

I’ve contacted the psychology department at the hospital for an appointment, but I doubt they’ll have time for me, or can be of any help. In the meantime, I lay here unable to sleep every night from the mind numbing anxiety and stress of being completely out of energy. I need to do things, I need to make phone calls, fill in forms, go to doctors’ visits, try to get the help I need in all ways possible, and I just want to rest. I want to be in a nice and calm coma for a few months. Just sleep. No musts or demands. I’ve even stopped wishing for health, my biggest wish is a coma. It feels more realistic. 

I got on disability leave almost 3 years ago. I then thought I just needed to do the bureaucracy for a few months, maybe a year, and then I could rest and possibly, hopefully, get a bit better. 3 years on, I keep hoping that it will end soon. Right now, I’m trying to get a more active wheelchair and a blue badge (parking permit for disabled). I’ve had a wheelchair for 2.5 years, and I just got the time to try and apply for a blue badge. I’ve had more pressing things to apply for, and my doctor has not written a medical certificate until now. I sent it out last week, and got it back because my doc (who have since quit his position at the health care centre) had missed to fill a few fields and I applied as both driver and passenger, and apparently you can only get either or! Weird rules, and so typical. It’s always like this. Something always goes wrong, it takes a lot of energy, and is more complicated than you could foresee. 

The system is set up for you to fail. It’s set up so that you should give up. It saves them money, they think. Very shortsighted. But it breaks you, after a while. Because you’re already having a hard time. You’re sick. You need help, and to get it you need to apply. In your application, you need to write in detail why you need the help. You need to write about all the worst things about your situation. You are then met with distrust and rejection, and they make assumptions about you and your private life. About your love life, about your illness, about every aspect of your life. Mostly, their assumptions are wrong. You need to meet their assumptions, distrust and rejection with intimate details about your life and your failure to be healthy, about your loss of ability. This is so draining. It is like a dementor, it sucks the joy and positivity and all that is good out of you. 

You try to stay positive and optimistic even though you are sick. You try to see what you have and what you can do, but they force you to look in excruciating detail about the things you can’t. And then they reject you. When you’ve humiliated yourself, begging for help, they spit in your face. And you just have to go on. Try again. It is exhausting, in itself. And you’re already sick and exhausted. 

It gives me angst.

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