You would thing that disability would be just one of those things, but I have spent the last 2 weeks filling out so many different kinds of forms for everything. From DLA, registering as disabled, care worker forms, OT. I swear my wrist gets a right work out at the moment, but its just so frustrating working out what exactly to put down and where it needs to go, who do I need to talk to? What do I do next? I think I have lost count on how many times I have had to explain what Brittle Asthma is, how it effects my day to day life and the 17, yes you did read that right, 17 different medications and other things I have to use and the machines and appliances that have become part of my life.
A lot of my time is spent on keeping me well enough to do the next bit. 20 minutes per time for a nebuliser or lining up an amount of pills is a lot to do. I want to get more of normal surroundings, rather than looking at another hospital room, having yet another needle inserted somewhere, or mask put on my face just so that I am able to breathe for a bit longer. At 23, knowing that this is something that cannot be cured, and won't just go away, knowing it will be something that is probably going to get worse with no way out, its the kind of thing you can't un-learn.
I have always looked at things in the best way and always pretended that things didn't bother me, and that I was coping, but that was the wrong approach to it all and it was no wonder that I was always crying when I was on my own, not wanting to admit that things were as bad as they are. I didn't notice the struggles to do simple things like making myself something to eat or drink, not that I wasn't struggling, I just saw it as I had done it so there we go. I hated myself for admitting to either myself or anyone else. I hated it even more having to tell my story to someone as they filled me a form in to explain how my health was and how I felt because of it.
I came back from my appointment somewhat down, maybe I was just smarting because it wasn't easy to admit how I was feeling here. I never ever looked at things in terms of "how sick am I?" or the rest of it, and it did leave me a bit crestfallen to know that I was actually in that state, the pale and exhausted young woman that looks back at me WAS me and I just need to make the best of it, stop running away.
3 years ago