Janet’s Story

Janet’s Story

I developed shingles in 2000 at the age of 56 and simply never recovered.  It was not residual pain and numbness that was the major problem but continuing to feel very ill.  At the time I could only describe it as flu-like yet it was not entirely like flu.  Two years later I was diagnosed with CFS.  Emotional, intellectual or physical activity all left me drained with severe frontal headaches and a racing heart. I felt well in the morning for one to two hours depending on how I slept and what I was doing.  Each day I developed a numb tongue that was, and still is, a red flag telling me to slow down, calm down, stop and rest.  I continue to feel less well as the day progresses.

My Family Doctor has been very supportive through this now fourteen year journey.  He referred me to a neurologist, internist, naturopath, and acupuncturist – looking for a cause.  All of my numerous tests were normal except high levels of lead and an acidic body. I tried acupuncture which made me worse, nutrients, and chelation therapy.  The only thing that has helped me on a day to day basis is careful pacing along with reminding myself not to rush, to keep calm, and to plan regular periods of meditative rest.

Early on I was my own worst enemy because I did not believe that I would not get better.  I told everyone that I had post shingles syndrome, leaving off the Chronic Fatigue Syndrome part. I had been a healthy high energy involved person in both my professional and personal life and felt there was a stigma to admitting that I had CFS.  I was a college teacher and administrator and tried to continue working for five years.  I tried a variety of part time roles with reduced workloads – all of which left me terribly ill.  I realized finally, that I could not continue to work.  I needed to get control of my health and my life.

Although I was believed and supported by my doctor, colleagues, my husband and children,  I found the experience with my disability carrier very humiliating.  It was easier for me simply to retire rather than try to prove how sick I was. Once I accepted the diagnosis,  I discovered the National ME/FM Action Network which gave, and continues to give me so much support emotionally.  I no longer feel alone.   I feel fortunate that I have gained some resilience and some vitality.  Occasionally, I have a day or two of feeling “normal” and I feel better, I believe, when I am in a sunny climate. Generally speaking, friends and acquaintances have difficulty understanding how ill I am because I do not look ill.

I now find peace and serenity in my paced lifestyle.  Some days are better than others and I go with how I feel.  Socializing wears me out so I limit and rest before and after, monitor the length even of phone conversations.  Working at the computer and reading I do in very small bits. I love listening to classical music and that is healing.  I have discovered the joys of bird watching, photography and painting which give me a sense of accomplishment. I walk every day and have learned exactly how far and at what pace so that I am not left drained.  I save my energy for the most important people in my life – my husband, our children and their spouses.

In summary, the challenge of ME/CFS has prompted me to listen to my body more carefully, explore new opportunities for learning and growth, clarify priorities and appreciate more deeply all that I have.

Janet, RN

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