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?
7 comments:
Oh boy! I can totally relate to this post. Half the time I wander around her like I have had a lobotomy. Fibro Fog is terrible, and sometimes humorous =D
Denise, Yes it can be humorous. My 9-year-old son gets a big kick out of it. He calls me Mrs. Crazy Pants!
You are not alone. I have done some really stupid thingss while in fibro-fog. I think for me, the most frustrating part is not being able to recall the words I need to complete my sentences. I also get upset when I show up at the wrong appointment at the wrong times. I've even started crying when this has happened. My son was teasing me the other day. He said whenever he reminds me that I have to do something, I forget. So now, he said he's NOT going to remind me and maybe I'll remember. Both of my kids started laughing at that one.
I know that it can get quite humerous, but at times it gets scary too. I know exactly where you're coming from.......all of you. I've done, or forgotten, it all. Before I stopped working and went on disability I used to work in an office. I would usually go out for lunch (1 hour) and go shopping. I worked right across from the mall. I mean I could walk there almost. Anyway, I would go out to lunch and forget how to drive back to the office. I would literally get lost! Nothing looked familiar and I'd just been there 30 minutes ago!
Now I rarely drive because it still happens. I have forgotten how to put the brake on, and started driving when the light turned red or stopped on a green light. I'm constantly going into the kitchen wondering what I'm doing there. I have to write my dr appts on my husband's calendar because I forget to look at mine and still miss the appts!!
My daughter isn't quite old enough to understand what's going on yet, so she just keeps telling me that I'm old~~ =D
Showing up on the wrong day and/or time for appointments and forgetting how to drive are both so scary. And getting lost! That is completely freaky. Sometimes I feel like an amnesia patient. It's so distressing.
I was a bit disappointed too. I couldn't sit through all the conferences - too much pain. I also had a hard time remembering what was said.
I can relate to using the debit machine. I have had the same code for years and years, but yet, I have forgotten it or forgotten how to use the machine. It's very embarresing, which then makes the situation worse.
I so hate it when I forget my words, yes right in the middle of a sentence. My husband & kids just stare at me waiting...and I have no idea what my words are. Or I will say UMM...to start a sentence and I dont even remember what I was going to say at all. I hate it, I feel stupid. So stupid when this happens. Im sure my kids are okay with me but I imagine I am an embarrassment to them. Because of the entire fibro deala. Glad to not be alone. Heidi
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