Living With Polio
PPS Pain and Fatigue
Linda Cannon Rowan
When I complain to my doctor about pain or fatigue, he usually tells me that I am not getting enough rest.
I GET SO TIRED OF HEARING THAT I NEED TO REST! BUT I KNOW THAT I MUST!
A day without pain is rare.
I was told when I was first diagnosed not to do anything to cause pain or fatigue because I may cause more damage to my nerves and muscles. But exercise is encouraged…so you have to find the level of activity that is best for you. My physiatrist told me that he loves his PPS patients because “all I have to do is to say, ‘Don’t do that!’ ”
Let’s see…what causes me pain and fatigue? Breathing too much…sitting up too long…holding my head up…chewing bubble gum or holding my mouth open at the dentist…walking, standing, sitting. Any activity that involves using my arms or hands without rest for short periods of time, such as: driving my van with my hand controls, sewing a hem into a skirt or pair of pants, holding up a newspaper or book without it resting on something, drying off after a shower, taking a shower in the first place. Did I say just breathing makes me hurt and causes fatigue? I know I did. That would have been almost unthinkable to me way back when I first heard I had post-polio syndrome. Now I have to use my Bi-PAP at night to do the breathing for me so I can breathe unassisted during the day without pain in my chest.
I think the worst kind of pain associated with post-polio syndrome is what I call the “Polio Flu”. This is usually brought on by long periods of activity when you FEEL “OK” while you are doing it (so you just keep on until the task is complete). I call this “Polio Flu” because the pain is like the worst case of flu you ever had…all of the muscle aches and pains similar to the it but without the respiratory congestion of the real “Flu.” When you finally lie down, a fatigue that overwhelms your whole body just pins you to the bed. It feels like your body must weigh 1000 pounds! You are hurting, but so tired that you can’t move…not even to go get pain medicine or even to cover yourself if you are cold. You may be hungry, but the thought of moving one muscle to get food is just way too much! The pain is in every muscle: legs, arms, body, even your eyeballs hurt to look around the room. At times I have been way too tired to even talk. My Mom used to call our home and sometimes if Terry told her I was resting, she might ask, “Can she TALK?” And she didn’t mean could I talk TO her, she meant was I ABLE to talk!
Over the years, I HAVE learned to pace myself…more out of necessity than anything else. My tolerance for driving my wheelchair van, even with “1/2 Effort Assisted” steering and brakes, has lessened. I can describe it more in miles than anything else. Ten years ago, I could easily drive my mother to one of her doctors near the hospital, which is about 20 miles from my home. We could have a nice lunch, and stop and shop at a couple of stores while we were out that day. Mama walked, and I used my wheelchair. Every stop requires me to transfer from my van’s driver’s seat to my wheelchair.
Starting about five years ago, I couldn’t take her to her appointments anymore. She had to change one of her doctors because we needed one that was closer to us. I can drive to the library, which is seven miles. I can only handle about two stops in a day, one if it is somewhere like Wal-Mart or a doctor where I have to wait. On these days when I am going to be out, my husband either takes me out for supper or calls for a pizza or I have “planned” leftovers, so I won’t have to cook when I get home.
The next day I almost always require total rest. Several years ago I had to stop attending Women’s Bible Studies and mid-week services at my old church which is about nine miles from home. I now belong to a sister church which is only two miles away. I can attend many more things and am not as shut in because of its proximity to my home. But I still have found that it is nearly impossible to get to the morning Women’s Bible Study that starts at 9:15 am.
When I go to church or to a weekday Bible Study, I have to get up at least 2 1/2 hours early. I often have to rest after I shower and rest again after I dress. If I have to rush out of the house an hour after I get up, I am “done in” for the day. This is my life. My doctor said that he wishes that more of his patients knew how to pace themselves like I do. Well, if I am doing it WELL, I’d hate to be one of his patients who don’t know “how to pace themselves.” I do what I do out of necessity.
Post-polio has caused many other problems with my nerves, muscles and joints and I hurt somewhere all of the time. My physiatrist told me that I don’t take enough pain medication. We have an on-going feud about this. I feel that pain is an indicator that something is wrong. More pain than “normal” for me and I know that something I did has caused it. I usually know what it was and adjust accordingly. For me, as a general rule of thumb, I need about twice the amount of time to recuperate from something I did to cause pain or fatigue. For example: one week vacation at a resort requires at least two weeks total rest when I return. I “rest up” before I leave home. I rest every afternoon while “on vacation”, but the preparation for the trip, travel and getting settled again when I get home end up doing me in. Lunch out, a little shopping and a movie with my husband driving my van will cause me to have to stay in bed most of the next morning. I will not discuss pain medication here because different things work for different people and no two people are alike.