We all know about pain. Pain is our body saying to us that something is not right or we better stop doing what we are doing. Few people get through life without having times of severe pain. Like it or not, pain comes with the “being human” package. No matter how hard we try to avoid pain, pain hunts us down like a beagle after a rabbit, and try as we might to avoid it, we still have pain.
As we age, pain becomes more prominent. We wake up in the morning and our muscles and joints are stiff. When we “overdo” our body lets us know. Gone are the days of doing what we want, when we want, with few physical consequences.
As a fifty-five year old man, I have the normal pains of an aging man, and then some. It is the “then some” that dominates my life day after day. I have what doctors call chronic pain. There is not a day or a moment when I am not in pain. (except when I sleep)
Some of the chronic pain I have is related to the “sins” of my youth. I played basketball, baseball, and softball until l was in my early thirties. I have had more sprained ankles and twisted knees than I can count. I have had fluid drained from my knee twice, and since I981 I have had a chronic problem with my knees. One surgeon told me to stop playing basketball unless I wanted to spend the rest of my life crawling up the stairs to the bedroom. I have successfully held off the surgeons for thirty years, choosing to live with the off-on pain in my knees.
I have sprained or twisted most every joint on my body. I no longer play competitive sports. I am reduced to cussing at the TV as I watch my favorite sports teams. However, I am often reminded of my sports playing days as I move around the house. Arthritis has taken up residence in my knees, feet, ankles, and hands. Such is the price I must pay for playing sports decades ago.
The reason (s) for my chronic pain remains a mystery to my doctors. My medical chart says Fibromyalgia and unknown neurological condition. (MS-like symptoms) The chart also says I have high blood pressure and Type II diabetes.
From head to toes, my muscles and joints hurt. A dull, aching pain, not unlike the pain felt after a long day of working in the garden or cutting firewood. Throughout the day I will get sharp stabbing pain in various places on my body. It just happens, with no connection to anything I am doing at the moment.
From time to time my skin nerve endings will become hyper-sensitive. When this happens I can’t stand being touched. I recently had to move the recliner I sit in. The grandchildren love to go racing through the living room and inadvertently they bump into my chair. These “bumps” are excruciating for me when my nerve endings are hyper-sensitive. Kids are kids, so I moved the chair out of runway.
Along with chronic pain, I have numbness in my thighs, hands, and face. Again, unexplained. If I go to town and walk in the store, the numbness in my thighs and face, after 10 minutes of walking, becomes a burning numbness. Quite painful. (I have had this numbness for years, long before I was diagnosed with diabetes)
Twenty or so years ago, I was hospitalized for mononucleosis, the kissing disease for teenagers, a sickness most teens quickly recover from. I was thirty-four when I came down with mono and it proved to be deadly. My doctor, a good man, treated me for several months for what he thought was some sort of infection. (I had a lot of problems with throat infections) It never dawned on him to test for mono. By the time the test for mono was done I was very sick, and two days later my wife rushed me to the emergency room.
My immune system was on the verge of collapsing. My liver and spleen were swollen and my tonsils and adenoids were pure white from the infection. My body was trying to fight off the infection but it was losing. The internist in charge of my case told Polly and I that unless my immune system turned around there was little he could for me.
Fortunately, my immune system recovered and I survived the mono. I didn’t preach for two months and I lost over fifty pounds. The mono altered my normal body temperature, dropping it to 97.0 degrees. (a source of constant irritation when the doctor’s nurse ignores me when I say a 99.0 degree reading is a fever for me)
I am of the opinion that the mono altered my immune system and the problems I face today can be traced back to the mono. I have no empirical proof for this, no slam-dunk test result, but my overall health problems are consistent with autoimmune disease.
All I know is this, after tens of thousands of dollars spent on tests and countless visits to specialists and my primary care physician, I have a life dominated by chronic pain. I am on a daily regimen of muscle relaxers, anti-spasmodics, NSAIDS, and narcotic pain medicines. Without these medicines, it would be impossible to physically and mentally function in any meaningful way.
People who are in good health or who do not have chronic pain often have misconceptions about people who have chronic pain.
Many people think that if you take narcotic pain medications you are “pain free,” but all that pain medications do is break the pain cycle and reduce the pain. Usually this breaking of the pain cycle brings great relief, even if it is only for a short while. Most chronic pain sufferers have a roller coaster relationship with pain.
I have been asked more than a few times if I am afraid of becoming an addict. The short answer is no. Am I physically dependent on the medicines I take? Yes, but an addict? No. (the difference between addiction and dependency)
Chronic pain has profoundly changed how I look at other people. When I was young and healthy, I had little sympathy for those suffering from chronic illnesses. I thought they just needed to put mind over matter or just pray so God would give them the strength necessary to do all the things God I wanted them to do.
My Mom spent the last ten years of her life as an invalid. Her life was a mixture of legitimate, serious medical problems and problems resulting from being a prescription pill addict. She suffered greatly and I fully understand why she decided to end her life at age fifty-four.
As her son, a healthy, strapping, physically active man, I had little sympathy for my Mom’s suffering. All I saw was her addiction and her disobedience to God. My heart remains broken to this day over my ill-treatment of my Mom. She deserved better from her oldest son.
Funny thing about karma, payback being a bitch, whatever you want to call it. Now that I have to deal with the chronic pain and debility that comes from the Fibromyalgia and neurological problems I have, I am much more sympathetic towards the suffering of others. Now that I am part of the club, I u-n-d-e-r-s-t-a-n-d.
Years ago, I preached a “hard” sermon about raising teenagers and how “good” Christian parents should raise their teenagers. After the sermon, a man came up to me and said, you might want to wait to preach sermons like this until you have raised teenagers of your own. At the time, I blew the man off, but, as an old man now, I know how right this man was. Best to defer our judgments about others until we have walked in their shoes.
So it is for those who have chronic illnesses. Over the years, well-intentioned family, friends and acquaintances have said to me:
- You can do anything you want to do. (no, really I can’t)
- Just put mind over matter (one of the dumber things people say)
- Come on Bruce, if you just go here or do this you will feel better. (and they know this how?)
- Oh look, you are out and about today. You must be feeling better now. (no, I am just putting mind over matter)
- My fifties were the best years of my life. (good for you. they are not for me)
- If you just eat __________ or take ____________ your pain/illness will be cured.
- Have you read Dr. So and So’s book? If you read Dr. So and So’s book and do exactly what he says you will be cured.
Inherent to these kind of well-intentioned offers of advice is the notion that whatever a person has wrong with them can be fixed. It is assumed that the doctors are wrong and the patient is ill-informed. (and that they KNOW better than everyone else) This is especially true with people who are proponents of alternative medicine. They are convinced that if I will just eschew the medical profession and go see a homeopath, iridologist,herbalist, acupuncturist, or chiropractor,put magnets in my shoes, or take this supplement I will be cured. (and I am not necessarily against all non-traditional treatment)
I am glad to hear of new treatments. However, I give little credence to anecdotal stories about people being healed. When considering a new treatment, I want to look at empirical evidence for the efficacy of the new treatment. I want to see double-blind studies and the like. And even then, I am not going to let Dr. Internet be my doctor.
When I find promising new treatments (and they are far and few between) I gather up the relevant information and my doctor and I talk about it. Over the years, I have tried numerous different drugs based on the above process. Most of them did not work and others, as in the case of Lyrica, worked but had side effects severe enough to outweigh the benefit gained by using the drug.
Chronic illness is often a complex mixture of problems. I recently saw an orthopedic doctor about my hands. He told me I have multiple fires burning and we would need to put the fires out one by one in order to get down to the root problem with my hands. This is a pretty good explanation for the problems people with chronic illness face…multiple fires.
Sometimes, putting out one fire causes an unexpected fire to break out somewhere else. Drug side effects are a huge problem for people with chronic illnesses. A drug fixes one problem but causes another. (i.e. taking blood pressure medication reduces my potassium levels, so I have to take a potassium supplement)
I wrote this post in hopes of educating the healthy and encouraging the sick. I know that some of the readers of this blog suffer with chronic pain and chronic illness. I want them to know I understand. I offer no advice, no magic cure. All I can do is say I understand. And that’s all most people with chronic illness want from others. They want to know that their family and friends understand.
Feel free to share your own experience with chronic pain and illness in the comments.