After lying in bed one morning trying to get up the energy to move, I finally dragged myself to my computer in the next room. The night before had been the usual; restless, night sweats, finally sleeping and waking as though I’d never closed my eyes. After 15 years of this you’d think I’d be used to it. But I never am.
As I sat staring at the computer, I knew what I wanted to write. I wanted to let people know there is a disease out there no one really knows about. It’s not contagious as far as anyone knows. Its cause is unknown. There is no cure. The one thing it is, is totally incapacitating much of the time. It leaves its victims so fatigued that if they’re lucky they may get three hours a day in which to function somewhat normally. It causes constant pain in the muscles, joints and bones. It messes with the short-term memory and leaves you confused and unable to concentrate. It puts words in the wrong places so you become afraid of conversation unless a person knows you really well. It also comes with panic attacks and an anxiety disorder that makes you so fearful that to brave a trip to the store is an overwhelming feat. It raises havoc with the immune system making a trip to the doctor for one infection or another the norm rather than the exception. It takes away the ability to enjoy life, leaving you coping with mere existence at times. In my case, it caused a split in my family and led to divorce. It makes finding a doctor who understands and believes it’s real almost impossible. It has so many symptoms that to list them all would be ludicrous, as no one would believe you. It makes me want to scream, “Won’t someone please understand?” But few if any, do. So, I remain silent. This disease is commonly known as Chronic Fatigue Syndrome in the United States. In other countries of the world it is known as M.E., myalgic encephalomyelitis.
For me it all started 15 years ago when I was living in the Southwest. I caught the flu and was down for a week or so. Although I didn’t feel all that great, I went back to work. I couldn’t afford to take time off as my husband was out of work and we had three children at home. I was sole support of the family and thankfully had a good job as an administrator. I noticed that I needed to sleep much more than I had before. I felt like I still had the flu. There was little I could do about it as I had too many people depending on me. I blamed this feeling on not enough hours in a day.
By the fall of 1990 I received a promotion at work. As I was training for this new position I realized that for the past two years I had been doing my old job by rote. I was having a terrible time learning the new job, which would have been a breeze in the past. I couldn’t remember things and often was confused by things that were relatively simple. I was also getting sicker. The pain had increased enormously. I was exhausted all the time and I was having more panic attacks. There were days that I could not get out of my bed and had to call in sick. By January of 1991, I knew that I had better look for work doing something much easier. My job was hanging by a thread so instead of waiting to be fired, I tendered my resignation. I finally found a position that was so simple anyone could have done it…but I couldn’t. I lasted four weeks, averaging at least one day out each week due to illness. I was fired. For the first time in my life, I had to face the fact that I just couldn’t do it. I was unable to work at the simplest of jobs.
My doctor kept telling me it was all in my head. I had been tested for everything and now it was time for a total psychological workup. I was all for it. I figured if it was all in my head I could do something about it. However, after many weeks of testing, I was pronounced mentally fit. Although I had problems with concentration and occasional aphasia as well as loss of short-term memory, I did not have any of the psychiatric maladies. The anxiety disorder did show up and he told me something was definitely wrong, as it was only one of the many symptoms that I suffered with. His gut feeling, as well as the testing told him that it was not psychosomatic. He suggested that I see a neurologist to rule out multiple sclerosis or other neurological problems.
Off I went through a new battery of tests, some of which were not terribly pleasant. The findings were the same. Nothing showed up except some white spots on the brain that no one could explain which were not consistent with MS or other neurological diseases. Being one of the kinder doctors he told me he had heard of others like me who were becoming incapacitated and suggested that I read what I could find on Chronic Fatigue Syndrome. He told me he would recommend that to my regular doctor.
Through the rest of 1991, I was pretty much bedridden. There were days that I could not bathe myself, let alone get out of bed. If I had to use the bathroom I literally crawled on my hands and knees. My daughter, who was thirteen at the time, was my caregiver. She could see this was not in my mind, that I was really sick. If not for her, I don’t know what I would have done.
As the weeks passed into months I had rare days that I was up and out. If I saw friends or went to church I was always greeted with, “Gee Ruth, you look wonderful! You can’t really be sick.” It’s a common phrase and one I came to despise. It is true; on the outside I don’t look particularly sick. I look pretty normal. But on the inside “normal” and “good” are not words I could ever use to describe how I feel. I can remember back to the ‘old days’ when I felt good and could do anything. Not now though. Now, even though I could go places, most of the time forcing myself to do so, I never felt what one would call well. I never knew what was right around the corner and learned to wing it; often departing places early, as I just couldn’t go on, leaving many a raised eyebrow in my wake.
By 1993 my marriage was over and I had to face single parenthood. I had to find a job, ill or not. I found work as a waitress but after two months, I had to leave. Too much time home sick. I was getting very ill again and did not have a clue what to do next. Being a fairly resilient person, even though humbled by this disease, I went to see my eldest son who lived in the same town with his family. I explained my situation and sparing my dignity, he invited my daughter and me to move in. By that time I was on Social Security Disability so would be able to pay room and board and supply extra food, which he allowed, saving my pride once again.
About four months later, I received a call from my oldest friend and godfather to my daughter. He was living alone in a very large house in New England. Why not return and share with him? My now sixteen-year-old daughter and I decided it might be a good move for us. My friend suffers from MS and his feeling was that we could help one another, as many of our symptoms were the same. He was not fully cognizant of what the CFS entailed, but was willing to learn. We decided it was time to go home and made the move back.
This transition was not an easy one for me. The move itself took just about all I had. We had nothing but our personal belongings. However, this started a new chapter in my life that was to be the most positive one in many years. After a few months I decided to seek some therapy. I just could not accept this disease and still had issues related to my marriage. With the help of my counselor, I was able to learn some coping skills that have been immensely helpful to me. Trying to stay in the moment, meditation and yoga became a part of my everyday living.
I can’t say that the CFS has improved as it is a remissive, exacerbative disease and I never know when either is going to happen. It wanes in and out. Last summer due to very high humidity I was very much in exacerbation, though fought it with all that I had. Then as autumn came wandering in, I was back in remission, which was wonderful for the short while that it lasted. Now I’m back in exacerbation again and the same old problems come right along with it. The constant questions that go along with it. Can I stand long enough to take a shower? Will I be able to keep my head clear enough to make dinner? Will I be able to get to the grocery store? Do I dare make a date with friends or family for tomorrow evening? But, I don’t fight it anymore. I still have days that are so terrible I want to scream. But I don’t. Sometimes I cry. Sometimes I laugh, and sometimes I just lay in bed praying to make it through another day. I have found that it worsens as I get older because my body is aging and many things that go with that process come into the equation as well.
This is my reality and I have to keep in mind that I have been in remission before and will be again. I have learned to wait as patiently as I can for that day. Writing has become the most valuable tool I have found. It has taken a long time for to me to write this article. From that first day when the idea came into my head, I have struggled with the information in my mind. How can I tell this so that people will have an idea of what it’s really like to live with CFS? I finally decided to tell it like it is.
If this makes one person aware of what Chronic Fatigue Syndrome does to those who have it, or even the fact that it exists, I will feel as though I have accomplished something. And for those of you who suffer as I do, I have one thing to say. Never, ever give up hope. This too will pass.
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