As Invisible Illness Week draws to a close, I can't help but be a little disappointed. I had hoped to be much more involved. But, alas, life didn't cooperate. The big monkey wrench in my plans to read and comment on tons of blogs and listen to blog talk radio was my laptop. It refused to go online for several days and my back can NOT take sitting in the computer chair downstairs. Neither can my arm, apparently. Every time I rested it on the desk, an electric shock feeling shot through my arm. That's a new one for me. *shrugs*
One of the things about the invisible nature of fibromyalgia that really bothers me is that I know people sometimes wonder what the heck is wrong with me. I look normal, I don't take any drugs or other substances that cloud my mind and yet, sometimes, I act really weird. It's the lousy fibrofog. Sometimes, I'm so out of it I don't even realize I'm doing anything strange until I see people staring at me with that "what is wrong with that woman?" look on their face. Often, I'm not even sure what I'm doing to attract their attention. Is it my glazed over eyes that won't focus on what's in front of me? My super slow reactions? My unsteady gait? I really don't know.
Other times, I'm aware that I'm having difficulties: Running my card through debit card machines becomes a major feat that requires all the focus I can muster. I can't figure out how to turn on the dishwasher and stand at the sink turning the water on and off. I just stand there, blankly staring at someone when they talk to me because my mind can't unravel the noises into language. Or, it takes me an eternity to even realize they are talking to me and that I should answer. I forget the words for things. I forget what I'm talking about right in the middle of talking about it. I forget what I'm doing right in the middle of doing it. I plan two things for the same day and don't even realize it until the day before when I suddenly realize I can't be in two places at once. I momentarily forget how to turn my lights or wipers on in my car...the list goes on and on.
And then there are the moments of complete and utter blankness that go on long enough to really freak me out. For example:
* The phone ran and I went over and opened the microwave door, then stood there confused about why the phone was still ringing.
* I was completely unable to work the debit card machine at Safeway and the checker had to come around the checkout and help me.
* My kids were locked out and knocking on the door. Instead of going downstairs to the door, I went to the light switch and started turning the light on and off. When I finally realized that wasn't working, I unbuttoned my pants.
* I got a phone call and this familiar male voice said, "Hey, Trisha. I'm home now." I just stood there trying to figure out who in the world would be calling me to tell me they were home. Finally, the perplexed voice said, "This is Chris." Still, I just stood there silently, going through the list of every Chris I'd ever known and wondering why any of them would be calling me to tell me they were home. Finally, the light bulb came on. It was my neighbor! The very neighbor who's kids were at my house waiting for their dad to come home. The very neighbor that I had talked to two hours before.
* A clerk asked for my phone number and I could NOT remember it. At all. We finally had to leave it blank on the paperwork.
Moments like this both embarrass and scare me. I hate feeling stupid and I don't like people thinking I'm on drugs or something. And those long moments of blankness are so scary. Just where is my mind? How can it just be gone? I read about one woman who forgot how to read. FOR A MONTH. Can you imagine? I'm terrified that my fibrofog will get that bad.
I've thought about shopping for a shirt that says "I'm not drunk, I have fibrofog!" What do you think? Good idea? Do you ever find people staring at you with the "what is wrong with that woman?" look on their face?