Filing Disabilty

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).

The Bath by cristalart at
The Bath by cristalart at

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.


4 thoughts on “Filing Disabilty

  1. Good luck with your disability application — I’d use the one line under what you can’t do now you could do before to write: please see attached. But then I’m a rebel!
    For lack of a better word inside my head right now, sounds like things have been pretty yucky. Sending you some unyucky thoughts. (((((hugs)))))


  2. I know how it feels to put it down on paper just how bad off you really are. It somehow makes it more real. And I know that sounds stupid, because it was obviously real–but I think you know what I mean. But be very honest. Tell them more than you think they want to know. Add another sheet of paper if you have to. Now is the time.


  3. I had a lawyer from the beginning of my process. I remember the 2 hour it took over the phone to fill out that form with the lawyer. I had never felt so open and exposed. I actually had to stop twice due to tears. I explained that I was telling her things that my family/friends don’t even know about. Items I choose to keep private on how bad things really are for me caring for my personal self. It was so hard but well worth it in the end. Being open and honest often is hardest on us because we fight with all we have, all the time, to strive for ‘normalcy’. Best wishes to you during this difficult form.


  4. I agree about adding however many sheets of paper you need to help you explain things in more detail. It will only help you. I had to do what was called a Self Report when I filled out my application, I wrote “please see attached” on the page. I think I had a page to explain things, maybe 2/3 of a page. I had 9 typed pages, double spaced, to explain how I was affected.

    They had suggestions as to what to write about and I also talked about how I’m affected according to the questions they asked the doctors and applied that to my report as well. I used whatever information I could from the application to help me, whether it was meant for me or not.

    Filling these things out bring out the emotions in us, don’t they? My main one was anger. I would work on it and then have to put it away for a bit.

    I hope this is a quick and easy process for you. You don’t need more stress in your life.


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