"I donít know about other folks with this illness, but I have some good days mixed in with my bad days. They are rare, but they do come at unpredictable moments. I canít really get up in the morning and tell you if I am going to have a good day or not, as it just happens. Often times, it depends on what I did the day before. I meant to mention that earlier, but post exertional malaise may last for days after a strenuous activity. Anyway, there may even be just hours during the day that I feel better than others. I tend to try to make up for lost time during these periods and end up paying for it later.
It seems that during the good days, people have more of a chance to come in contact with you. On a good day, I will make my trip to the grocery store. In my home town, it is hard to go out without seeing someone you know. I will speak to these people and all that they see is that I was out shopping. You should see the look on their faces when I tell them how bad this illness is. I can almost hear their thoughts as they think how I must be exaggerating. If I was so sick, then why was I out buying my own groceries? I mean, sick people donít need food do they? Since I am sick, the world has to stop around me. The bills stop coming, the yard doesnít need to be mowed, and I have no need to get out of the house. In all practicality, I should be lying flat on my back with tubes poking out of every orifice.
It might sound hilarious, but donít
be surprised if many people think that way. When you tell someone that
you have a disabling condition, they immediately assume that you should
be in a wheelchair or confined to a hospital bed. Truthfully, there are
many with CFIDS that do indeed fit those categories. I am thankful for
what I am able to do. I am sure that people with some terminal illnesses
face some of the same problems. I have seen cancer and HIV patients doing
more than some well people do. The problem with CFIDS is that it doesnít,
and hopefully never will, fall under the category of a terminal illness.
The things that people donít see are the very things that disable people with CFIDS.
When you are not at the grocery store trying to go on with your life, people donít see the suffering that you are experiencing. They donít know about the sleepless nights. They donít feel the joint pains in the mornings. They donít understand what it is like to search for a word, but realize that you have forgotten what something simple is called. They donít know what it is like when you come home from the grocery store and crash on the recliner because carrying the basket at the store was too much for you. They donít know how easy it is for your good days to disappear and become only a clouded memory. They just donít know."
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