Posted by Pattie on 4/25/2003 09:04:00 AM


Having a chronic illness is not easy. I know that is an understatement, but I need to remember that at times. The frustrating thing is that I keep expecting something different from my body. It used to be that I could put my body through some serious abuse and be able to recover. In fact, it seemed to me that the abuse opened up creativity for me. Does that sound weird? Living in a perpetual state of whirl gave me (and can still give me) a sense of excitement and creativity. I thrive on it emotionally, but lately it is causing me considerable pain. I gave up beer and pills and all-anything/starvation diets a while back, but the sitting for hours, procrastinating until the creative thrill hits me is still the way I get things done. One of the things that attracted me to journalism and to being a professional student was the deadline. I can do things on a deadline that I can’t get started without one. I am a project oriented person and I like waiting till the last minute to finish a project.

I don't write about lupus much because I fear that I will attract all those idiots who will talk about my weight and my health. Or at, least that's what I tell myself. I am beginning to wonder, however, if it is because I just don't want to admit that I'm chronically ill and it is affecting my life and my ways of doing things.

In 1997, I got sick at spring break and didn’t feel better until Christmas. I thought it was the flu. I threw up so much that I couldn’t hold water. I had to go to the emergency room from dehydration. I stopped throwing up but the achy feeling in my muscles and joints didn’t go away. I was fatigued and I couldn’t sleep. I actually don’t remember most that 9-month period because the days ran into each other in a weird blur of fatigue and pain and medical tests. The result was a diagnosis of lupus and fibromyalgia.

Then came the geeky coping mechanism. I read everything I could get my hands on – books, internet, support groups, doctor’s pamphlets. I became an expert. I still read studies when they come along. I changed my area of concentration in my Ph.D. to medical sociology so I could learn more about chronic illness and get credit for it towards my degree. I wrote my master's paper on my aqua aerobics class so I would be motivated to stay in school and to go to aqua aerobics. When I am confronted with something, my first response is to understand it inside and out. I did that part quite well.

But I now know a lot and I am still sick and I am still having to cope with everything on a daily basis. It isn't fair that that knowledge didn't cure the illness. Isn't knowledge power?

My next strategy was to bravely live life anyway. But I realize now that in order to do that I’ve had to depend upon my husband and family and just pretend that I was doing things on my own. I have taken things for granted that I should not have. This strategy of denial and belief that I can do anything I would have done – pat me on the back (aren’t I the brave one?) -- is not sustainable and it is hurting my relationships. It is ridiculous to pretend I can do everything I would have done. I have a disease that is incurable and I am disabled by it. That is a hard nut for me to crack. I don't want to be disabled. I want the energy I used to have. I want to be able to move and work and play as hard as ever. It isn't fair and apparently it takes more than will power to overcome this illness as well. So knowledge isn't power and will isn't power. Fuck.

Since I had a bout with pneumonia in Dec 2002, I have been trying to find a different strategy. I blamed lack of discipline on my part. I thought if I just went to the pool three days a week and got active again, everything would be better. I expected to feel great. Instead, I am in this pain cycle where I concentrate on one thing getting better and then everything else hurts. I can’t seem to find the thing that will make me feel better all over.

For example, if I take care of my costal chondritis by sleeping upright, my lower back and feet hurt. If I lay in ways that help my back, my rib cage hurts and I have trouble breathing from the inflamation in my sternum. I take steroids for sinuses and asthma and I get a hump on my back and have trouble sleeping. If I don't sleep well, I have more fibromyalgia symptoms. Now I’ve been working on a treatment to open up blood vessels more because the latest research is that blood flow restriction contribute to fibromyalgia and the blood flowing to my brain has started giving me migraines, especially right after I finish one of those last minute projects. It is nightmarish and I am so tired of being in pain. Something on my body hurts all the time, even when I sleep. I can't seem to know my way out of the pain. I can't seem to will my way out of the pain. I can't seem to discipline my way out of the pain.

Underneath it all I am afraid. I am afraid I will never be able to work on the edge again. I love the last minute but I can't seem to work to the last minute any more. I have to take breaks that I never had to take before. I have to pace myself. I am not a pacer. I am crescendo. I miss the thrill. I miss the beauty of the last minute.

Where the hell will I find my muse in this pacing?

Life seems duller with each passing year. I hate it.

Carl said something yesterday about the inner life. I think that might be part of what is missing with me. I don’t take time to be quiet often and just be. I haven’t been able to speak the past few days and it has occurred to me how strange it is to be quiet. I don’t read anymore except for work-related stuff. The only fun I get is going out to eat or watching television with an occasional movie thrown in. I am missing that abandonment one feels when something takes over their soul and they get lost in the moment. I’m missing dancing, or sitting in a sweat lodge or chanting or beating the drum. Something is missing.

How am I going to live this life of dull routine? I need the last minute. I need the deadline. I need the creative frenzy. Why does this have to go? Goddamit.

Today I am wrestling with the wolf and the wolf is winning.