“It’s a nice today, plus it is finally the long weekend, which means I am home and lucky to have time to enjoy my family, or do things that will make me happy, like my housework so I can finally have a clean house. Or read one of the many books (or articles …) that I have picked up over time and kept in hope that one day, I would have the time and energy to them reading.
But my body says no! You will not take advantage of this day!
My tired legs do not want to walk. And each thought in my brain is like a hammer in my head. The beautiful sunshine burns my eyes. I’m hungry but I cannot eat, even when my children offer me a snack. I love when they make me something to eat, they are often very creative and this makes me so proud… I just stay in bed and hope the outside world will be ok. I know my children will be sad of course and worried, but I can’t function so I can only hope they will be ok…I become like an animal hiding to die!
But I don’t, fortunately and for no logical reason, my body will soon decide to give me back my life. Then I will rise again and I’ll be me … but for how long?” Mrs. Smith, 2008
I knew a man who needed dialysis to live. After his treatment, he had two days were he could do anything. He was fit and happy to be alive! His hobby was to restore the old cars. His garage was filled with restored Ford 1920’s cars, antique tools bought on eBay. It was like a museum and so well organized … .The third day, he no longer functioned. Sick, he stayed in bed. The fourth day he returned to the hospital for treatment that lasted all day. Basically 2 days out of 5, he was himself. He told me that these 2 days erases the 3 others.
People who have chronic fatigue syndrome should be able to enjoy the days that their body gives them back their life, and without prejudice! No one would ever questions the need to rest for someone with a kidney disease…. Having an invisible chronic ailment means you have to continually prove that you have a real illness. That although you seemed fine yesterday, today you are not struck by mental illness, nor weak minded or LAZY. THIS constant misbelief of chronic fatigue syndrome is TIRESOME! Instead of support, you are alone. Which opens the door to depression, job loss, financial troubles….