Some Things I Have Learned From and About Chronic Fatigue Syndrome

September 19, 2014

Dear friends, family and constant readers,

I thought I would wrap up my recent writing on chronic illness with some things that I have learned in the last 13 years from my struggle with Chronic Fatigue Syndrome, or have learned about the nature of the illness itself.  This is not an all inclusive list - merely some gleanings or insights that have been important to me in managing my illness.  So without any further adieu, my list:

* Modern medicine doesn't know everything

As I reflect on my own attitudes toward the medical community when I first became ill, I recognize a certain naivete that was present on my part.  I held doctors in great esteem, and their knowledge of the human body and what ails it as vastly superior to my own.  There was a clear hierarchical relationship which I presumed.  When you are sick, you go to the all-knowing doctor who provides you with an answer as to what is making you ill, then gives you a prescription for medication that will make you well.  While I still respect doctors and specialists, and continue to hold them in esteem for the work that they do, I have nonetheless taken them off the pedestal upon which I had placed them and see them as I do the rest of us - very human, skilled but not all knowing and sometimes fallible.  Because of my personal experience, I view modern medicine and its technology as still insufficient and, at times, rudimentary and primitive at best.  There are still so many illnesses and diseases which exist that even the most skilled and knowledgeable doctor doesn't have a clue about how to diagnosis, treat or potentially cure.  As one of my doctors put it, "Even the most modern of medical technology has not caught up with some illnesses, leaving us to grope in the dark at present."  In some respects, I wonder if our descendants will look back at many of our treatments for certain illnesses with the same distain that we have for the bloodletters of the 18th Century and before.  That said, I am glad that I have the doctors I have.  I do believe that I am receiving the best the medical community has to offer.  The problem is, that in my case, the best is still not good enough.

* No two cases of CFS are the same

Technically, Chronic Fatigue Syndrome is not a specific illness.  It is a "syndrome."  This means that it is a medical catch-all for something not otherwise diagnosable.  As a syndrome, it is merely a collection of related symptoms which occur together in a non-random way.  This is one reason that it took me just over a year to be diagnosed - and why it takes other people many years to be diagnosed correctly.  I had a variety of symptoms that fit quite a number of other illnesses.  Those other illnesses had to be excluded by medical testing.  Once those other illnesses were ruled out, only then could I be positively diagnosed as having Chronic Fatigue.  Therefore what makes me a CFS patient is that I experience a cluster of symptoms which are very similar to other people also diagnosed with this disease.  But there is yet another complication - CFS does not present exactly the same in any two given patients.  We may have overlapping symptoms, but the way that CFS affects us would be unique to each.  Therefore the treatment plan will differ with each patient.  That is why it is very important that I work closely with my doctors and that I understand what is going on in my own body.

* Routine is my friend

If you were to live in my house shoes for more than a day, you would probably find yourself extremely bored.  That's because most of my days look very much alike.  I have discovered in the self-management of my illness that routine is very important to maintaining my health and general well-being.  If there is too much chaos or change, I just don't do well.  It's not an emotional reaction, but a physical one.  My symptoms worsen and I am overwhelmed by fatigue, making it necessary to spend a great deal more time in bed resting - something I really don't like to do.  So to avoid this, I stress routine.  I get up about the same time each day, eat at similar times with similar foods, take naps approximately at the same times, and go to bed roughly at the same time each night.  It's boring, but it works.  I have a semblance of a "normal" life when I maintain my routine.  When I can't or don't maintain this necessary routine, my life and health tend to spiral out of control.

* Just because I look good doesn't mean that I feel good

People with CFS are often told how good they look.  The assumption is that if you look good, then you must feel good and therefore are growing more healthy.  Nothing can be further from the truth.  As a person with CFS, I can rise to the occasion and pull myself together so that I appear rather healthy, but that doesn't mean that I am.  I am not healthy.  I am a person with a chronic and long-lasting disease that has ravaged my body and life.  People tend not to see those times when the bottom has fallen out of my life and when the illness is at its worst.  The reason that folks don't see me like that is because I don't let them.  I cloister myself at home, take care of myself and try to feel better until I return to a more even keel.

* Listen to my body

Since onset of CFS, I have become very good at reading and listening to my own body.  If I don't, who will?  I need to be aware of what I am feeling and experiencing so that I can deal with it before it deals with me.  For example, I notice that when I feel suddenly bored - unable to watch TV, read a book, surf the web, or write - that I am just very tired.  If I continue in my activities, the boredom and fatigue only worsen.  Therefore, when I feel boredom coming on, I recuse myself from whatever I am doing and go lie down.  That may be taking a nap or just resting until I am somewhat refreshed.  Once rested, I can resume my activities most of the time.  Another example is when I have cognitive issues.  I call these moments as having "brain fog."  I just can't think clearly and my decision-making is impaired.  The only recourse is rest.

* Get adequate sleep

One of the central issues of people with CFS is that the rest we do get is unrefreshing.  We may get 8 hours on a given night, but we may awaken feeling as though we haven't slept at all.  Getting the right kind of rest and sleep is absolutely essential to me.  Sleep disorders have plagued me since the beginning of my illness.  There have been times of way too much sleeping.  And times of way too little.  And even when I got the correct amount of sleep, it wasn't of the refreshing variety.  So I have worked with my doctors to achieve as restful a night as I can.  With the help of sleep medication, good ear plugs, a good pillow and proper mattress, and generally maintaining good sleep hygiene (i.e., no TV in the bedroom before sleep), I have been able to achieve a relatively deep level of sleep and rest much better than in the past.  It's a tricky thing to do, but is so important to how I feel the next day.

* Avoid stress

Any kind of stress - be it physical or emotional - can be a trigger for my CFS symptoms to flare.  My routine often protects me from stressors, but only so much.  I must constantly evaluate whether something - an event or activity - will cause undo stress and make me sicker.  Prevention is the key for me.

* Engage in moderate exercise

I confess that I live a very sedentary lifestyle.  I know that it is not good for me and that the long-term consequences may be very detrimental.  But the fact is that physical exertion can also be a trigger for CFS.  If I over-do-it with my activity, I can relapse quickly and be out of it for several days.  I realize that for my long-term well-being, I must stay as active as I can, but as in all things - with moderation.  If I feel up to it, I may walk around the block on a given day - or if I'm feeling really good, I may walk three or four blocks.  The length of my walk is not the measure of success, but the fact that I am able to get outside and walk at all.

* Stay healthy otherwise

Having one chronic illness doesn't mean that you are immune from other diseases.  In fact, having CFS may highly increase the chances of getting other co-morbid illnesses.  I know this because it has happened to me.  Because I have to deal with CFS and other medical complications, I must work to stay as healthy as I can otherwise.  I take the flu shot every fall.  I've had the vaccine for pneumonia.  I now eat very well and nutritiously.  I walk as I am able.  I go to my doctors at least every three months to be evaluated.  I take prevention very seriously.

* Alone, but not lonely

Community and friendship is important to any person with a chronic illness.  I can joyfully say that I have a number of important friendships in my life.  My connection with these persons is absolutely necessary for me to cope with living in illness.  Because of the nature of my illness, I am alone a great deal of each day.  I may go two or three days without seeing another human being, save my wife, Lynn.  Living that kind of life can be depressing in and of itself.  I have always needed people in my life, especially so now.  But I need people who can accept me with my illness as a factor in our friendship.  It was disappointing to me that a number of people whom I considered close friends disappeared from my life after I became ill.  I can only hazard a guess, but I believe that they were uncomfortable with my illness and were at a loss to know how to talk to me and sustain our friendship.  I can understand what they might have experienced, but I wish that they had stuck with me despite the awkwardness.  I could have really used their love and support.  But as I said, I still have quite a few friends who have indeed stuck by me through this awful and debilitating illness.  Each day I am grateful to have them in my life.

* Keep mentally stimulated

Because CFS has a detrimental effect on cognition, I must stay as mentally stimulated as possible.  I frequently find this in good conversations with others, challenging reading, maintain interesting hobbies and activities, writing these blog posts.  These sorts of things challenge me and also enable me to have the semblance of a normal life.

*  Be an active patient, not a passive one

I cannot stress it enough - be your own best advocate.  Take ownership of your health care.  Work with your doctors as a partner in seeking what is best for you.  Do not be passive or assume that because someone has a "Dr." in front of his/her name, that they have all the expertise and knowledge.  You must be the expert on your own life and health!

* Be flexible in planning ahead

As I mentioned earlier, routine is my friend - but that doesn't mean that I don't want to engage in special activities outside of that routine.  For example, I recently went to my 35th high school reunion.  It was important for me to go, but I knew that I had to plan ahead or else my symptoms would spiral out of control.  So I factored in appropriate time for naps.  I adjusted my medication times so that I could function at certain events.  Because I planned ahead, I ended up having a great time and enjoyed my visits with people I have known since elementary school.

Well, that's all the insight I have to offer for today.  I hope that this post, as well as my recent series on CFS, has been helpful to you in understanding what it is like to have a chronic and long-term illness.

To Learn More About Chronic Fatigue Syndrome, check out:

The Center for Disease Control - CFS

The Mayo Clinic - CFS

Solve ME/CFS Initiative

If you have questions about Chronic Fatigue Syndrome or my experience of it, please don't hesitate to contact me!  Also, be sure to leave a comment on the blog's homepage at the end of this post.  I truly value and desire feedback!

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Cheers,

Stephen