Living With Polio
Jane Dummer, Maryland
I am qualified to speak about fatigue because I fade right after lunch. When I agreed to speak, I realized very quickly I was going to discuss something which is global, yet something I really cannot define for you.
So what am I going to say? Fatigue is a normal part of living. Perhaps I can say something about what I have experienced that would help people who do not yet know they have polio-related fatigue to see how it may be different from the fatigue that anyone who is alive has.
I had polio many years ago and did fine with a brace and cane while pursuing normal activities for about 30 years. I knew my baseline. I have always been limited in what I could do, but within the parameters of my limitation, I was able to carry on a fairly normal existence. About ten years ago, I started to develop weakness and pain. Much of the weakness was in my better leg, which started giving way on occasion. I was very concerned.
But I was not aware that I had overall fatigue until the day I was coming back from a meeting in an enormous federal complex in Baltimore. About halfway back, my better leg started to shake. I stopped dead in my tracks. I had to sit down; I did not move. After I rested, I limped over to my desk. I sat in a state of “zombie-ism” for about two hours, thinking, “This is it! You know you have to go to meetings in other buildings. You need a wheelchair.”
I bought a wheelchair that afternoon. (I did not buy the right kind, but that is another lecture!) The next day I rode over to the same place and back in my wheelchair, and I was absolutely amazed! I came back as rested as when I had left for the meeting. I was able to work for the rest of the afternoon. At that particular moment, I realized that over a period of three or four years, I had gradually been curtailing my activities to deal with chronic overall, unaccustomed fatigue (about which we hear so much), and I did not even know I was doing it!
I am a very pragmatic person. As a general rule I deal with things in a straightforward manner, but it really shocked me to think how much I had altered lifestyle and didn’t even know it!
In the last couple of years, it has been obvious that fatigue is my main problem. I could not ignore it forever. It has had an impact on my job, on my social life. I had a nap before lunch today, and that is why I am here. I am good for six hours. I have an eight-hour-a-day job.
What helps me the most is rest. I asked if I could take a rest period on my lunch hour at work. I was nervous because I knew they were going to think I was not doing a competent job if I could not stay awake for eight hours. It was hard to go and ask, but I did it. They agreed.
About three weeks later my supervisor said, “Jane, I am just not sure this rest period is working out.” I said, “What do you mean?” She said, “Before you started to take that nap you were so docile and quiet all afternoon, I didn’t have to worry about supervising you. Now I do not what you are going to stir up!”
One of the biggest things about fatigue as a polio survivor is its assault on your self-esteem. You suddenly cannot do what you have always done. You may start an activity and cannot continue it. You may have to work part-time. You may have to forego the promotion because the job might be too taxing. If you let it, these circumstances hurt your self-esteem. I think the trick is to take as much control as you can. Make your own choices and be aware that you can change them! You have to alter your lifestyle and see what works for you. That is what I am doing. I am trying things, and if they do not work, I drop them and I try something else. I am going to look at part-time work, think about disability retirement, and look at getting some hobbies that are not so taxing. I am trying to focus on quality of life, retain my sense of humor, and learn. I am trying to listen to my body, not deny what is going on, and live within it. I share with people like you, to learn from you, and hopefully to help you.
©Post-Polio Health (ISSN 1066-5331), Vol. 6, No. 2, Spring 1990