Chronic Fatigue Syndrome is, by the very name, exhausting. It is not the being ill that offends me so much, the frequency and variation of the illness. Last week I had the flu-- this week the cold that never went away two weeks ago has become a sinus infection. And I do not get used to the variety and I will miss work when these things hit and sleep through class and feel miserable.
I think that I beleive that one day I will wake up and be better- that while I might not be strong or particularily healthy I will not be sick anymore. I can take it from there. Instead I go the doctor regularily- though I try to avoid going, waiting instead for the latest infection or refill needed and we talk about ways to build up my immune system and what supplements I can add to my daily handfulls of pills.
I get happy sometimes when I have gone a couple of weeks without missing class or getting sick for more than one day. And then when I do get ill I become unhappy about that. I am not depressed- regular meetings with my psychaitrist assure that along with the slight increase in my antidepressant meds just to make sure.
Mostly I am afriad. I know what I need, but I see myself as inept. I need a more regular schedule and more discipline and I need to put away my laundry and be more strict with myself. I am afriad that I will fail biology and I will lose my financial aid or get kicked out of school. I worry that I would not be able to work and that when I applied for disability it would be denied and I would be hopeless.
Sometimes I feel posessed. In the back of my mind I wonder if there is not some invisible demon sitting on my shoulder and taking away my strength. I go to Tai Chi. My chi is off the master tells me and I should watch out for my liver, but to work on those relfexoloy points he showed me. I used to be stronger than this and more resilient. I used to work hard and do things. I wonder why no one else sees the demon.
I spend time writing lists- lists that I invariably lose- taking inventory of my blessing and my deficits. I list what I need and what I have and what I want. And deep down I know that I will not be smart enough to go to medical school, but I cannot give up yet, so I look at different chemical modeling sets. I examine various graduate schools- library science to study childrens literature, and then maybe psychology? Where can I help the kids the most? I want to do good. I look at GRE preparation materials. I worry that I will not find a job or be able to keep one. Learning disabilities and chronic illnesses are not indicitive of success.
Some days I cannot get out of bed. I will lie there for a moment after waking up and I will not be able to move. I think to myself "How long will I lie here? Will I ever move? Is something wrong? Will an ambulence need to be called, and will my insurance cover most of it?" But then I either fall back to sleep or am able to sit up and I let the new worries get to me. Will I be able to not throw up today? Will I stay awake at work and in class? Will I be productive. Will I be happy.
Other days I will not get out of bed because I need to rest. I will be achey and tired and sick. I will throw up, but only little bits at a time, leaving multiple opertunities to continue retching. And when my stomache is finally empty I will continue gagging and ejecting the water I attempt to swallow. And my nose will be stuffy on I will not breath and the headache will be at its worst. On those days the demon tries to smother me.
Some days I feel stronger. I do more at physical therapy and I have hope. I will stay awake in class and have the energy stand at the bus stop and get the mail and be happy. I don't know if those are days when the demon is not as strong or bored, if I'm just learning how to hunt it.
But today is a bad day and I worry and I wonder what tomorrow will bring. But I am tired of the uncertainty, I am tired of being tired. I want my life back. I want hope.