Activities of Daily Living worksheet SSDI

Hi fellow fibrofriends.

I have a few questions for any of you who have had to fill out this form.

I have seen some people advise others to fill this form out as if this were your worst day. On my worst day I cannot cook, clean, bathe etc. I have no problem stating I cant grocery shop or anything else for that matter on my worst days, but I am concerned about going before a judge and him questioning me on this. I wouldnt really be lying, but I would be stretching the truth.

Has anyone dealt with this before?

I wrote a letter to my congressman today asking for his assistance and am hoping the attorney I want to hire will be calling me back today. I pray this all works out.

Thanks as always for your wonderful insights!

Sandy

I know we feel like we're stretching the truth when we describe our worst day, but considering how we feel even after a small activity, there's no other way to explain it.

On my activities form I explained that my husband did most chores & errands. When I accompanied him on errands, I had to hold his hand for balance. I said he cooks most meals, I reheat or have a sandwich when he's not home. I only shower every other day at best, and only when he's home because of my dizziness. He brushes my hair after my shower because my arms hurt & the shower exhausts me. When they asked what I do for enjoyment, I explained that I can only watch "light TV", I can't handle paying attention for the length of a movie. I am unable to go to movie theatres or even a restaurant. Friends may visit, but only for an hour or two. If I do a small activity, I am bedridden for the next day. I have also been to the ER several times for fainting.

I know it sounds extreme, and luckily every day is not always that bad. There's just no way to explain that on a good day I can enjoy making a big dinner, or going shopping with my mom. Also, some days I can actually do an hour or so of sewing. If we put this on our forms, they would misunderstand and feel that we should be able to handle at least a sedentary job. The problem is that we certainly can't do even these small tasks for more than a short time, nevermind a full time job!

I worked at an investment bank and supervised 30 admin assistants before I got sick. I went to the gym regularly, and traveled frequently. Now I get a headache after a 20 minute phone conversation. I start to feel like the words get jumbled in my head due to the CFS related cognitive problems. I have to nap sometimes twice a day or I feel like I'm going to pass out. It's just too hard to explain this to outsiders.

Don't feel guilty, or feel that you are lying. The only way for them to understand why we feel that we cannot work at this time is to explain it this way. Think about your worst day... now think about how you would feel getting up 5 days in a row and working an 8-hour day. The fear of having someone tell me that they believe that I should be working in this condition helps me explain why I can't. We are certainly entitled to our benefits while we figure out how to fight this illness. We didn't choose to get sick, and we deserve the power to fight it.

BTW, my hubby also wrote a letter explaining that he was my primary caregiver, and describing an average day for me. He also stated that we had to move from CA, back to Mass to stay with my mom since he was missing too much work to take care of me. I was approved within 6 months of applying, without getting a lawyer. I know that I was very lucky, but I also know that being prepared and thorough really helped.

good luck with your appeal, and let us know how everything is going.

take care,
Pam J

You put it all into a new perspective for me. Thank you so much!