Tuesday, April 25, 2006

Chronic Fatigue and Fibromyalgia

"I have suffered from both of these illnesses for a number of years. I figure that I first got sick when I was pregnant with my daughter 20 years ago. I didn't receive an official diagnosis of Chronic Fatigue Syndrome until she was almost 8 years old. I was diagnosed with Fibromyalgia in 1997.

Both of these illnesses are hard for people to understand and I think that is because the person suffering from them looks well. They can in fact look really good, unless you see them when they are in a "flare" and then you can tell that they are in pain. I have been is such pain and unable to walk that I have had to use a wheelchair. That was the lowest point of my life, when I thought I had lost my mobility.

The pain and tiredness are not the worst part of these illnesses for me though. That would be the brain fog and inablitiy to concentrate, that can strike out of the blue leaving you frustrated and for me, at least, bored. I have been in a flare for the past few weeks, which is why I haven't posted much recently. The pain and tiredness has been bad enough, but it is the brain fog that has got to me. I haven't been able to concentrate enough to read, post, chat or do anything that reguires concentration or manual dexterity. My fingers just don't want to do what my mind tells them.

This brain fog can be embarrassing too. I misplace words and use the wrong ones. I do things like calling the dog, a cat, or calling the arms of my chair sleeves. My partner understands what is happening but other people who don't know me, look at me like I am stupid. It is so frustrating. When I lose words, it is like going through your house looking for something you have misplaced. I know the word is in my head and I go hunting for it and can't find it and end up just giving up in frustration.

I'm tired of being tired and in pain. I'm tired of not being able to do things that I want. I'm tired of feeling useless",I whisper.

Are you listening?

3 Comments:

At 11:55 PM, Blogger Disability Blogger said...

That might be the best description of fibro fog I've read yet. Just curious, do you also have sleep difficulties and/or sleep apnea?

 
At 3:33 PM, Blogger Alisa said...

Yes, I have trouble with sleep. In fact last night I didn't sleep, lay awake until about 7 am this morning, then slept in fits until 11:45am. When I am in a flare I have a lot of trouble falling asleep. During good times, I can sleep for up to 11 hours at a time. During bad times, even if I sleep I am still exhausted. I have also noticed that during a flare, my heart is racing all the time. It gets weak and fast, on average 120 beats or more a minute even when I am lying down, whereas normally it beats between 86 and 100 beats per minute. I don't know what this is caused by but it causes a feeling of panic all the time. I hate it!

 
At 9:46 AM, Anonymous Anonymous said...

you Are Not useless,and we all love you

 

Post a Comment

<< Home