I’m going to write a bit today, not about music, but about this damned affliction that I have mysteriously been strapped with, generally referred to as Chronic Fatigue Syndrome.
I’ve only attempted to relate this disease in one or two other blog entries, but it seems to garner a decent bit of attention when I do, so I’m going to take a stab at it today, primarily because today is one of those days that I almost think that I’d be better off dead, although that may sound a tad harsh.
No, I’m not contemplating suicide. I don’t have the guts to do that to everyone else involved in my life that such an action would inevitably and adversely effect. The stigma surrounding CFS alone is bad enough. The inability, or unwillingness, of the scientific community to get to the root cause of the disease is enough to drive an individual into deep depression, and to withdraw from society.
No fun can be had. No breaks can be taken. Nothing is available that will alleviate the constant dull headache – the constant pressure at the top of my eyeballs and consequential sensitivity to sunlight. Nothing can take away the God-awful feeling of constant sluggishness that I feel from the moment I rise to the time that I fall asleep.
I have most recently described the feeling as one of having a constant hangover, coupled with that of coming down with influenza. I am aware that this may be impossible for those who do not suffer from the affliction to identify with this notion, or even believe that it is possible to feel this way 100 percent of the time, but I can assure the reader that this is the way that it is.
And then, I have to awake and begin the day. The difficulty of having to get through a day, accompanied with these symptoms, cannot be over emphasised. There are things that need to be done around the house, and I have to do them. The smallest tasks are sometimes nearly impossible to surmount, because the symptoms that I have just outlined are only baseline symptoms. Sometimes they are considerably worse, and other days they are marginally better. On the better days, it almost reminds me of how good I used to feel. If one is not careful, this will bring on a bout of depression, and I learned that lesson the hard way, so I must put that out of my mind, and be glad that I’m having a “good” day. It is almost laughable to refer to it as good.
One has to rest several times while washing the dishes. One has to rest after cleaning the cats litter boxes. One has to rest while sweeping and mopping the floor. One has to take breaks while cooking a meal.
Some have asked, why not use a dishwasher? Because washing dishes gives me something to do.
Others have asked why I don’t order out. Because it’s too expensive, and again, cooking gives me something to do.
One inquired, “Why don’t you lose the cats, dude?” Because the cats give purpose to my life. I talk to them, I fuss at them, I cry to them, and I tell them my troubles, and they respond by nuzzling and marking me. Sometimes that in and of itself is annoying, but I tolerate it, because if I were completely alone, I would begin to question the value of my life, and that is best not to ponder.
What it seems that many do not understand, is that as humans, we want things to do. If we begin to strip away ‘doing’ in order to ‘not do’, then our lives reach a point to where we feel useless and unnecessary.
Lacking the ability to do an honest day’s work anymore, one’s life becomes amazingly empty. I used to imagine having nothing but all the time that I required to do nothing but write and record my music. Having reached this point however, has been a mixed blessing, as recording music has become a major task. Singing is a task. I have to pause the process and rest between verses, because singing requires an incredible amount of energy. Either it always did and I didn’t notice because I had a seemingly endless store of it, or it did but it didn’t matter because I had said endless store.
These dishes – the litter boxes – the mopping and the sweeping. These tasks have taken on new meaning in my life in the past nine years, and if you can’t imagine how that must feel… you should consider yourself very fortunate indeed.