Tag Archives: Chronic Pain

One Day at a Time

Toledo Louisville Baseball Game April 14 2013-029

Tony Cingrani, Top Pitching Prospect for the Cincinnati Reds

Boast not thyself of to morrow; for thou knowest not what a day may bring forth. (Proverbs 27:1)

As I mentioned a week or so ago, I am in the midst of a pernicious flare-up that has pretty well incapacitated me. No matter what I do, every day is just another day in paradise. Smile

When I have flare-ups like this the medications I take don’t seem to work very well. Even on good days I am never without pain, but the pain medications do break the pain-cycle and I usually find some relief.

This is not the first flare-up I have had and it certainly won’t be the last.  All I can do is take one day at a time. On any given day, I have to read what my body is telling me and plan accordingly. No matter how many plans are booked in my calendar, (and I am a person who plans ahead) it is my body that determines what I am doing or not doing.

Sometimes I play the mind over matter game. I did this on Sunday.  My sons, grandson, and I attended the Toledo Mud Hens vs. Louisville Bats baseball game on Sunday. I knew I shouldn’t have went. My body was screaming, NO! NO! NO! I told my body to fuck-off and I went to the game anyway.

We had a wonderful time. We got to see the number one pitching prospect for the Cincinnati Reds pitch. The temperature was cool but watching the Bats beat the Mud Hens warmed me up nicely.

By the time I got home from Toledo I knew that I had grossly miscalculated what price would be required from me for disobeying my body.  I had a tough night…

Which brings us to today. I had plans for today too. They are trying to start a Secular Student Alliance at Northwest State Community College and I wanted to be there for their first meeting.

Polly took a half-day of vacation so she could drive me to the meeting. I had everything lined-up…all I needed for my body to do is coöperate. (in other words, dammit, do what I say)

Telling my body to fuck-off on Sunday caused my body to wait for an opportunity for some payback. Today is payback. My body is laughing at my plans. Who am I to think I could do whatever I wanted to do and not pay the required toll?

So my decline into the physical pit deepens. I have no one to blame but myself. I didn’t want to disappoint my boys…I want to spend every moment I can with those I love.  My heart was right…but I ignored what my body was screaming in my ear.

Have I learned anything?

No. Smile

A Few Thoughts About Chronic Pain and Chronic Illness

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.

The Unthinkable

It’s 4:00 A.M.

She has been asleep for two hours.

I envy her ability to fall asleep in a matter of a few minutes.

Even when I was in good health, it took hours for me to wind down and fall asleep.

The doctor says, I have a mind that never seems to shut off.

Tonight sleeps eludes me, not because of my ever-running mind, but because my body is wracked with pain.

From head to toe, my body screams in protest.

I want to scream too.

I am already crying.

I am waiting for my friend to show up. It has been an hour and a half now.

Soon, I hope, very soon.

When my friend, the narcotic, finally arrives, I might be able to finally sleep.

It usually takes two hours before I can feel the pain start to subside.

Soon.

I think of my mother who put a gun to her chest and pulled the trigger, ripping a hole in her heart.

Twenty years ago, I couldn’t understand why she did what she did.

I do now.

I now understand how a life of pain and debility can bring a person to despair for life itself.

And to consider the unthinkable.

I think of my kids.

I love them.

I think of my grandkids.

I love them. What joy they have brought into my life.

Is my love for them enough to pull back the thoughts of the unthinkable?

Tomorrow will be another day like today.

The weather might be different, the delicious food she cooks for me will change, but one thing is certain…

Pain will be waiting for me when I climb into bed.

Pain will mockingly say to me, I  will win this battle some day.

And if I can’t win, I will reduce you to a junkie living from pain fix to pain fix.

Maybe.

When thoughts of kids and grandkids can’t stem the thoughts of the unthinkable…

I turn to gaze at the woman who for thirty-four years has shared a bed with me.

I quietly touch her, she is alive, a reminder of all we have shared together in this life.

No matter what the storms of life have brought our way, she remains my friend and lover.

My rock and shelter in time of storm.

We promised never leave or forsake one another.

I promised…

I can’t promise that I will never come to the place that I can no longer bear the pain.

Boast not thyself of tomorrow, for thou knowest not what a day may bring forth, the Bible says.

How true.

Every day must be taken on its own terms.

My friend has finally done his work.

Thoughts of the unthinkable begin to fade.

I feel sleep coming on.

Until tomorrow…

* this is not a cry for help, a solicitation for medical advice, or a request for understanding.

Living With Chronic Pain

Some days the title of this post would be Dying With Chronic Pain.

For the past fifteen years I have been on a down hill path health-wise. Fibromyalgia. MS-like neurological problems. Cognitive impairment. Osteoarthritis. Knee problems. Lower back problems.  High Blood Pressure. Diabetes.

The one constant is pain. There are no pain-free days. There are only less-pain and more-pain days. No matter how the pain is treated….narcotics, muscle relaxers, exercise, TENS unit…..it never goes away. All that can be hoped for is a lessening of the pain so that I might live another day.

Some of you know what I am talking about. You are where I am. You know this path quite well.

Some days, like today, I get bursts of adrenaline that make me think I can do whatever I want to do. For about 4 hours I was busy, busy, busy. I even drove the car. I worked in the garage. I attached my “new” router table to the work bench.  I put my OCP personality to work and straightened up the tools. Wow…..how neat and ordered things look.

And then everything came crashing down. The adrenaline was gone. I had done too much……time for more medicine. Time to try out the new drug the doctor gave me yesterday. To the recliner. Time to watch a few basketball games. Then on to 2 episodes of Glee. Surf the web on my iPad. I want to buy a telescope. Which one? How much? I read a few articles in Astronomy magazine. Why all the sedentary busyness? Simple. Anything to take my mind off the pain that courses through my body from my head to my feet. Every joint is screaming …….the muscles are crying for relief.

Finally, I am just tired. The narcotics are finally working and the new medicine is calming the muscle spasms. Tired, but not ready for bed. No, that will be 4 or 5 hours from now. Sleep never comes easy. Sometimes, like last night, it doesn’t come at all. Oh well, try again tomorrow, I tell myself.

Some days I try to fight against the diseases that are trying to strangle life out of me. I do silly things. I refuse to admit that I have health problems. I will buy books I know I will not be able to read for a year or two. I subscribe to magazines, knowing that I will never be able to keep up with them. I take Polly out for the weekend. We paint the town. We have lots of fun. I know I shouldn’t. I know there is going to be hell to pay. Fuck it, I don’t care.

I often fight with the way things are. Dammit, I want things to be how they were before I became sick. My counselor often reminds me that one of my biggest problems is my refusal to embrace life as it is. Guilty!

A year ago we started remodeling our bathroom. 12 months later? Still not done. Almost…..The basement stairs and utility room remodel? 2 years and still not done. Almost….My medical doctor tells me that this is better than just giving up. I suppose he is right but some days it seems like I am just adding to a pile that I already find insurmountable. But then I think…what’s the alternative?

That router table I mentioned above? Bought it four years ago. I had big plans…….Yeah……My kids laugh and tell me to keep on buying. They look forward to inheriting all my new tools some day.

Some days, all the books, magazines, tools, and projects do nothing to assuage the depression and despair that overwhelms me like a tsunami. The days that start and end in bed. The days spent in the recliner with barely enough strength to operate the remote.

Give in? Already have. Give up? Not yet.

Besides, I am taking Polly to Lake Michigan on Friday. Yes sir, we are going to get in the car and drive…….We plan on seeing a Lake Michigan sunset. We are going to eat out. We are going to make the most of the day.

Then it will be pay day for Bruce. Polly knows. I know. She tells me……we don’t have to. I say, but I want to. We only live once. Life is short. Besides, this may be the best day I ever have. I can see the future. I know that my days of pained mobility will one day be days of pained immobility. Some days it already is. Wheelchair. Cane.

I don’t know how to live life any other way than I am living it. Up. Down. Backward. Forward. Backward. High. Low.

Polly is home. Time to smile and tell her what a wonderful day it was.

She knows I lie.

(This is not a plea for help, prayer, or medical advice. This is just me talking out loud to my friends.)