We finally filed the paperwork for disability, and two days later I got a packet wanting more information about how my illness(es) limit my activities.
This entire process has taken so much out of me, it is so depressing. I do not think of myself as being so dependent and disabled as i really am. Writing it out is taking its toll on my psyche, and making me very scared about hubby taking on more responsibility outside of the home.
I was just filling out the papers and it asked what I could no longer do because of my illness that I used to do. It gave me one line. Really? One line? I realized I could probably write a book! I listed some of the most important things and then said there were way too many things to list in that area. I should probably add a new page.
When I think about it, the question should be, what can I do now that I could before. I used to do be able to do more than I do now. Now, I spend most of my time in bed. That needs to change, even if I just go to the couch. But the headaches are happier in a dark room, and my bedroom has been made dark, no other room is. I can still type on the computer…well some days. Some days, like recently, I’ve been having low-grade vertigo for days. I have been having a heck of a time. Every day I feel like I can’t move my head, things move, just not very fast. In the evenings it gets worse, much worse. (perhaps my Intracranial Hypertension meds need to be adjusted?…who knows.
The paper asked me if I have any unusual fears or behaviors. Wow! That got to me. I actually had to admit my fears. My fears that I will have an attack in public, my fears that an attack will hit any time (of course these fears are very justified).
But then there is the fear of taking a shower or bath…yes, I am absolutely terrified every time I have to bathe or shower. I’ve had an attack in both places, I never feel steady in either place, and I’m simply scared. I can’t be in either without someone (Stuart) in the bathroom with me, often in the bath or shower with me. Washing my hair is the worst. Having the water on my head, the temperature change, my head goes crazy. It doesn’t seem to make a difference if my hair is long or short, it is hard. At least when it’s long I can go longer between shampoos, I can just put it up in a pony tail and no one knows. (luckily I have dry hair). I normally wash up at the sink, and when I can’t do that because of my wonky head, I use wipes. Still, I miss my lovely baths. I used to relax and enjoy a bath. I’d light candles, read, or just soak. It helped my sore muscles and it made me feel pampered. Now, I’m embarrassed because I’m a bundle of nerves and crying just thinking about the fact that I need to take a bath.
Many days I’m afraid to get out of bed. I will wake up and I’m just not sure. OK, I feel like I could, but do I risk it. The last couple of weeks have been vertigo attack after vertigo attack, I hate to be unprepared for an attack, and it’s easier to ride out in my bedroom.
I’m not trying to sound pitiful. I don’t want that. I am trying hard to make things better, and I have had a few decent days. Yes! Celebrate the good days!!! It has just been hard writing down all my limitations. It’s also hard telling them, well sometimes I can do this, and other times I can do this, but most of the time I can’t do most of it. However, I do hope it gets better. I even said that in the paperwork. I do hope I will be able to do more, but I know I will always have severe limitations.
Funny thing….when they asked what I used to do that I can’t do now, I just realized I didn’t say “Hear”. Ummm, you would think that would be the first thing I thought of…but no..?
But that’s another story.