As I was looking for something else today, I came across a little booklet I wrote many years ago, so I decided to type it up as a blog post as another means of preserving the story. I suppose I have a digital copy of it somewhere, but if I do it is on a 5 1/4″ floppy disk that does me little good today. 🙂
The Truth and Consequences
May 31, 1990
It was 3:00 PM, Thursday, December 8, 1988; a time I had come to anticipate, yet fear, more than anytime before. It was an hour later than our appointment when a doctor finally comes in and informs me that all their testing has found nothing significantly abnormal and she believes I have had an untreated viral infection resulting in my present illness, Chronic Fatigue Syndrome (CFS). With these words I am told she is late for another appointment and I am to be dismissed following a thorough exam in their cardiology department, thank you and goodbye! Thus ended a two-week stay in Rochester, Minnesota with eight full days of doctors and tests.
Little did I realize at the time, my nearly two year search for answers was not going to end there at the Mayo Clinic. In fact, it was to begin a period of more questions than answers and of learning to cope with a disabling illness that I did not understand, and about which there was little information available, and those around me had never heard of before. At this point, it is hard to determine which has been more difficult; reaching this diagnosis or learning to live with it. After a study of current expert medical opinion, the following is my explanation of what has happened in my life. My struggle with CFS, also currently known as Chronic Fatigue Immune Dysfunction Syndrome, probably began on an otherwise innocent early spring day during February of 1987 when I contracted a viral infection which left me with a severe sore throat and nearly unable to speak for two weeks. This triggered my immune system to declare war against this viral intruder to ward off its ill effects. Not being one to let such “minor” problems temporarily slow me down, I spent the next four months deeply involved in working, often averaging three to four hours of sleep a night. Even at this rate of activity, it did not take long for my immune system to win out over this virus and this “temporary inconvenience” was seemingly gone. At this point, no one knows for sure what happened or why, but for some reason, quite possibly assisted by my state of exhaustion and continued pace of activity, my immune system did not shut down its attack. With the virus gone, my immune system then looked for other foreign intruders to conquer. Not finding anything of significance, it soon turned to fighting anything it perceived as having, or having had at some time, a foreign substance or virus attached to it. This soon left me in a state of being virtually allergic to myself. Words are not adequate to explain the ramifications of this statement or its impact. I believe the best way I’ve seen it described is in an analogy that states the fatigue and related symptoms of CFS is to the ordinary end-of-the-day tiredness as lightning is to a spark.
As I wrote the preceding paragraphs two to three weeks ago, I was attempting to begin a written account of my experiences and life since becoming ill. In doing so, I realized something about my illness, and myself, that I had not realized. I have often read in books and articles about the accompanying mental confusion and impairment of CFS, to which I attributed my loss of memory. To those who have never been able to remember very well this may not seem to severe, but to me it was devastating. It was my memory that got me through high school and a year and a half of computer technology courses at Ivy Tech with practically straight A’s. It was often noted by others that my memory was amazingly sharp, but now this is gone. In contrast to this, the area I discovered while trying to write my story is much more valuable to me now that it is gone than it ever was when I had the ability to use it. The area I’m referring to is speaking and conversation. Because of my nature to be a loner, and not being known as a talker or conversationalist, it wasn’t until I started these writings that I realized I could put my thoughts down in writing so that others could understand me. However, when I tried to speak these same thoughts, the words somehow became mixed up and lost before they reached my mouth and what I said didn’t make nearly as much sense, if any. On the conversation side of this, one of the symptoms of CFS is the inability to think clearly. This reveals itself in a confusion that impairs the ability to reason. A CFS patient is most aware of this when attempting to perform some simple mental task. I can listen to people speak and not understand what they are saying, as if they’re speaking at 78 rpm but I’m listening at 33 1/3. I can be asked a simple question such as, “would you come to dinner?” or “would you come to this meeting?”, and I’ll often respond with a blank look or empty-sounding answer simply because I didn’t understand what was being said. At times it may take several hours to respond intelligibly to even the simplest of questions, but if pushed for an answer I’ll respond with what seems to be an appropriate answer yet it often falls short simply because I haven’t really understood what was said. It was for these reasons; that what I say isn’t necessarily what I think I’m saying and what I hear isn’t necessarily what is being said, that I attempted to summarize in writing CFS and my struggle with it, so that others could understand me and help explain CFS and myself to others.
Much of the following summary is either directly or indirectly taken from a book entitled, “CHRONIC FATIGUE SYNDROME: A Victims Guide to Understanding, Treating, and Coping With This Debilitating Illness” by Greg Fisher. Although I am able to put things in writing, it still takes a lot of effort and energy, so I use words already written when available to save these precious commodities. The major component of this illness is a fatigue that stretches to its outermost limits so that the word hardly seems adequate to describe the condition. It is misery to go through each day as exhausted as the day before, to go to sleep knowing I am not going to feel rested when I awake. Resting doesn’t eliminate the fatigue, but it does prevent me from feeling worse. To someone with CFS, not feeling worse often seems like the next best thing to being cured. There is nothing that I do without first weighing the benefits against the detriments, for there is nothing that I do that is not detrimental to one degree or another. I prioritize, eliminating from my schedule activities that require the most amount of strength while giving the least reward, because I pay for every action with the currency of exhaustion.
CFS sufferers know malaise, meaning “ill-feeling”, as my “dazed CFS feeling”. That probably doesn’t explain much to someone unfamiliar with CFS. If I said I was sick to my stomach, most people would understand exactly what I meant. But how do I tell you what it’s like to be sick to my brain? I don’t mean a headache, I mean a brain ache! My mind refuses to function properly, but it’s not just an inability to think clearly, this is a related but separate symptom I mentioned earlier. It’s a pressure in my head that forces me to focus inward on my illness, making me unable to interact with the rest of the world. Sometimes even emotions can’t breach these prison walls. I feel as if I exist on a flat emotionless plain with none of the peaks and valleys of normal experience. There are other times, though, when just the negative emotions come through. My anger, frustration, and despair overwhelm me and I long to be back in the emotionless state.
Joint pain has been a symptom that has fluctuated more than the previously mentioned symptoms. While the other symptoms have been fairly constant, varying only slightly in intensity from time to time, the joint pain comes and goes seemingly at random intervals and intensity. This has been so intense as to make it difficult to get around, yet at other time it has simply been more of a minor inconvenience when compared to my other symptoms.
It is not easy falling asleep when your throat hurts, your head is splitting, and your joints are aching. It is quite easy to understand then that sleep, even for people as exhausted as I am, is not easily achieved. Even if sleep finally comes, there is no guarantee that it will be long or restful. I have often slept for twelve hours or more only to wake up feeling much sicker than I did the night before. I believe part of the reason is that I did not get a good night’s sleep. Sometimes I wake up two or three times a night, totally disoriented. Other nights I toss and turn so much I use more energy than I gain. I will often awaken suddenly to find myself dripping with perspiration, as if I had run a marathon in my sleep.
This pretty much sums up my condition for the past three years and the present. There are also various “minor” symptoms that I have had which led to this diagnosis of CFS. I have just recently come in contact with a state support group and a CFS Clinic in Indianapolis, which will keep me abreast of any medications or breakthroughs with this illness. As for now, though, there is nothing that has been found to cure or relieve the symptoms, except on a limited basis with a few of the minor symptoms, of this disease. It is unlikely that I will be able to return to the lifestyle I once enjoyed any time soon. Until a cure is found, there is no agreeing evidence or expert opinion in the time span of this illness. In 1988 I was told ten to fourteen years was normal length of illness, now more medical experts are saying it never really goes away, CFS patients just eventually learn to believe that their adapted lifestyles and symptoms are to be considered normal for them.
The above article is something I wrote nearly 30 years ago! I wish I could give a more detailed accounting of the when and how of overcoming this illness, but the improvement was so gradual that I’m not sure how it came about except by the grace of God. Today I direct a prayer ministry and work full time doing building and grounds maintenance. I’ve learned to be careful when I’m not feeling well, to slow down and get the necessary rest before too many of the old symptoms resurface. And just as when I finished the article thirty years ago, I’m still not sure if CFS is really gone or if I’ve just learned how to manage it so it doesn’t control me. I suspect it is more of the managing of it as there are times when I can feel it lurking just below the surface when I push myself beyond a normal weariness. I share this as a means of remembering for myself, but also as a message of hope for people who may be in the midst of the struggle.