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Dealing With Chronic Illness

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By SANDY LANKFORD

The Tampa Tribune

Published: October 26, 2008

I have hesitated too long in writing this article, not because it isn't near to my heart but because the average person has such a hard time dealing with anyone who has a chronic illness. When you discover that you are coming down with the flu, it feels terrible. You work as long as you can with it, but somewhere in its course you just have to give in to it, go to bed and recover. The muscle aches are all-consuming. The fever, chills, fatigue, stomach problems, whatever you experience feels just awful. You just want it to be over, and when it is,you want to get back to your "life" and forget you ever had it.

When I began to feel that something was wrong with me, I tried to deny it. I worked harder, even getting two more jobs on top of the one I had. I thought I could just overcome it by shear force of will. I chalked up the fatigue to the fact that my life was an endless series of movement. The migraines were caused by too much stress. But the pain in my muscles and joints was becoming too much to handle, and I began taking an endless series of aspirin and Tylenol and not finding any relief in them. What was wrong with me?

I went to chiropractors and massage therapists. My physician put me on stronger medicine for the ever increasing migraines. But a fear was growing in the pit of my stomach. When I would take my classroom to lunch (I was a teacher), I would become so tired I would just sit and stare for the few minutes I had alone. After school, when I sat in my car listening to my second-grader talk of his day, I would wonder, "Do I have the strength to get through the rest of the day?" I had another very rewarding job going into migrant homes after school tutoring a student and sometimes his family. But I would worry. How much longer could I keep this up?

On Wednesday nights after a 14-hour day (I was choir director at my church and taught private piano and voice students), I would always come home to another migraine. I'm sure you would say it was all of the activity. But I dearly loved all that I did, and as I said before, my reaction to feeling worse was piling on more.

Finally, the bottom dropped out. One day in school I couldn't remember what subject I was teaching. I couldn't remember where my student's papers were. In a panic, I asked my tutor, and she told me they were in the same place I always put them. Mrs. Organization, I always had my week planned, my papers in the same place, my lesson plans explaining everything I was supposed to do. But none of it made sense, and I was scared to death.

After one of the most horrific migraines of my life and a backache so bad I could barely walk, I left school and ended up in the hospital right before our spring tests.

I had developed Lupus (or Systemic Lupus Erythematosus) and had Fibromyalgia, too. The Lupus had given me a stroke and the Fibromyalgia was an unheard of illness back then that many doctors dismissed but is very, very real. Both illnesses cause so much pain, debilitating fatigue, brain fogginess (sometimes it feels like I have little worms crawling around in my head) and so many other symptoms too numerous to discuss in an article this size.

I can feel almost normal one day and the next be so sick I can barely open my eyes or move my arms and legs. You can see me walking around and never know anything is wrong. Other times, I am walking with a cane in a wheelchair or bedridden. But those on the outside don't understand what it feels like. It never goes away. I have a hard time planning anything because I don't know how I'm going to be on a particular day. Sometimes I can think pretty normally, but other days I can't even put words together. Things I used to love to do I don't understand anymore.

I tried to go back to teaching. It was the one career I had always wanted, felt called to do and had loved from the first day I stepped into the classroom. But I didn't have the strength any more. The pain would become so strong that by lunchtime, I was hiding under my desk trying to get relief and rest. I would be dizzy, couldn't think straight and knew I wasn't making any sense.

Most days were so bad, I had to go home and go straight to bed until the next day. By the middle of the week, I woke up too sick anyway. I finally had to give in and realize I couldn't work any more.

Many illnesses last a lifetime. You never get over them. They wreak havoc with you, your family and your future. You seem to be dealing with them fresh, all over again every single day. And there are so many of us out here.

Sandy Lankford, a wife, mother and grandmother, is a former educator who now lives in Sebring.

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