What it's Like or A Normal Day Isn't

When I had my disability hearing in 2002, the judge asked me to describe a "normal" day. My reply was that there is no "normal" day other than some degree of pain. Some days I hurt if I sit. Somedays I hurt if I lay down. Some days I hurt no matter what I do. Sometimes the pain is almost unbearable. Sometimes the pain is manageable, but it's always there. Some days I sleep all day. Some days I can't sleep at all or I can only sleep for 2 to 4 hours. Some days I'm up 20 hours straight. Some days I have severe headaches or migraines (although my migraines got fewer and farther between when I quit my last full time job). The stress I had at my last job caused migraines about once or twice a week and they'd last anywhere from 3 days to a week. Sometimes it hurts if I even pick up a glass and sometimes my hands are fine. Sometimes it feels like someone has stabbed me with a cooking fork and sometimes it's just a constant dull throbbing. It doesn't always hurt in the same place but it always hurts somewhere on my body. Some days I can't think worth a hoot and somedays I can think clearly. The cold weather is worse than warmer weather. On stormy days or when the barometric pressure is up, I hurt and nothing can stop the pain.

While I was describing my "normal" days, I got confused and forgot what I was saying and said, "I'm sorry what was the question?" My face turned red and I was embarrassed. The judge stopped me and right then and there told me he was ruling in my favor, he said he couldn't speak for Social Security Disability, but his recommendation was in my favor.

When I went to my brother's funeral in Jan. 2008, I was standing outside the hotel waiting for my niece and asked someone standing nearby if my niece was in the hotel and was that (a van) her car (I called her by name)? The person turned around and said yes it was her car. I said "is "her name" in the hotel?" And she said, "Aunt Debbie, It's me." She was standing in front of me and I momentarily didn't recognize her. Suddenly, it was like she appeared and I could see it was her, but it freaked me out a little. That was the first time my "brain fog" was that bad. My only explanation is that I had had to travel (which is hard on me) and I was exhausted and kind of drained from both the travel and the circumstances of the trip (i.e. the funeral). There was another incident later when we all had breakfast together before heading to the airport to go home. One of my four nieces was showing me a photo of her daughter and her daughter was standing beside one of her cousins and I got confused and thought she was the daughter of another niece, not the one who was actually her mother. It was only momemtary and when I realized what I'd done (I had actually said, Wow, she looks more like your daughter than hers...which she was) I was again embarrassed. I hadn't seen my nieces (my half brother's children) since the two oldest were 4 and 2 years old. So they were bewildered and just looked at me kind of funny. They were completely sweet about it and never said a word, they just looked bewildered. I can't blame them. They barely knew me and I was acting like I had alzheimers...which, Thank God, I don't have. I'm only 52 and whereas in the past, I had a mind like a steel trap, I now admit that the steel trap snaps shut occasionally. I have an IQ of around 137, but there are some days, I'd be hard put to prove it.

Does anybody really think I like having to depend on Social Security for a living? I had worked from the time I was 16 years old. I was very independent. The hardest thing I ever did after I was diagnosed with Fibromyalgia after I was in two car wrecks in 1988, was when I had to say "I can't do that" to something the first time. I was always the one who'd say, "I can help with that"...."I can do that". It was so depressing. More than one doctor I've had has said, "Well, most doctors think Fibromyalgia is all in the mind because there is a history of depression in people with Fibromyalgia". I replied (to the last one), "Who wouldn't get depressed when you can't do the same things you used to do, when you're in pain 24/7, 365 days a year and you know it will never stop." "Who wouldn't get depressed when you can't do the things you used to be able to do or the things you love, and even when you do plan something, you have to call it off because suddenly you're too exhaused from getting ready to go, to be able to actually do it."

I told her, "It isn't the depression that causes Fibromyalgia, it's the Fibromyalgia that causes the depression."

She didn't have much to say to that. Thank Goodness. It's about time.