Living with CFS

I have been living with CFS (Chronic Fatigue Syndrome) since Jan 1989. It is why I may not blog for awhile. For me my energy gets zapped the most from cognitive tasks. So the more time I am on the computer the more I crash. Right now it is very hard to think and to write.

For those with CFS you understand what I am talking about. For those of you who don’t have CFS it can be very hard to understand. One way I like to describe it is for you to imagine the worse flu you have ever had and then imagine it never going away. Take note how tired you are when you go to bed, then imagine waking up feeling like you did when you went to bed. That is what I go through every day. My muscles and joints ache and hurt daily. When I have spent too much time on the computer (or reading, or any mental activity) my brain feels like a block of cement, or foggy. Watching television is actually the only thing that helps me to recover from to much energy expenditure. Expenditure of energy through physical activity causes me to crash but I recover from that quicker then mental expenditure. It usually takes me about 2 weeks to recover enough energy to be able to be active again. During that time I usually lay on the couch and watch TV.

CFS is not just a matter of being tired. Being exhausted does not mean you have CFS. For me it involves a sleep disorder. If I do not take my sleep med then I will wake up every hour on the hour.  I will also not get any REM sleep. On the sleep med I get a solid 4 hours of sleep and then start waking every hour. It involves chronic pain of the muscles and joints (a form of fibromyalgia where exercise does not make it feel better). It involves a fatigue that involves every part of your being. Imagine your jaw muscles being too fatigued to chew or swallow. It involves cognitive problems galore.

That is living with CFS in a nutshell. I will write more when I can.

Take Care

Alex

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