Ceil’s Struggle With Chronic Fatigue Syndrome (ME/CFS)

I am 63-year-old woman who was diagnosed 8 years ago at 55 with Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) Seemingly overnight I went from a person with abounding energy to a person with relentless fatigue. Not fatigue like feeling tired rather fatigued that hits like a brick, leaves you with no reserve and no relief despite rest. For me it is coupled with coursing pain throughout my limbs. All my adult life I had been a stereotypical type A personality, driving myself to do it all. My calendar was full every hour of a day and if I could I would squeeze one additional meeting or chore in to accomplish just on more item in a day. With precision like a downhill ski racer going through turns I juggled motherhood, a business, a full social life and my hobbies. At day’s end I relaxed by splicing film at my kitchen table into the wee hours of the morning. Every paper on my desk was filed, my music collections were cataloged, and my photo albums were embossed with labels by date and year. I was known for re-arranging furniture. The joke in our family was that when my husband would come home each night he was afraid to sit down for fear I might have rearranged the furniture during the day. My son in law called me, “the Real Deal” because there was nothing asked of me or needed that I could not or did not do, immediately.

In 2005, I was a wife, mother and daughter helping care for my elderly mother and traveling out of state to visit with my brother, both who were battling cancer. By January 2007 within six months of each other, both my mother and my brother had died and the initial signs of what would ultimately be diagnosed as CFS and Fibromyalgia appeared.

Throughout my life when I would catch a cold or have flu it would take me a full 6 weeks to recover. But one morning I awoke with flush symptoms, aches, pain and foggy mind came with some new symptoms. I could not sleep. I didn’t have the strength to get out of bed, make a meal or even muster the energy to talk. My internist did arrays of blood tests which all came back normal. I was told to just ride it out. In the meantime my family had decided that I was suffering from depression due to my bereavement. I knew I was grieving but there was something different. Despite my rest I found no relief from the fatigue or the pain. For NINE WEEKS I laid in bed other than to use the bathroom. There was laundry to be done, kitchen dishes to be washed, mail lay on the floor. A jar of peanut butter, a sleeve of crackers, and a knife from the kitchen sat on the table next to my bed. This became the mainstay of my nutrition, sustaining my hunger until my husband came home from work with dinner. Friends offered to bring me lunch or go to the grocery store and I would say thank you but “no”. I needed help but I did not have enough energy to explain what I needed more or less answer the door or talk to them if they came over. So I spent a lot of time alone, feeling isolated, gaining weight, and to put it mildly, scared to death. No one seemed to know what was wrong with me. When I felt strong enough, I would lie with my laptop in bed and search the Internet for answers. Before long I had diagnosed myself with any number of chronic, degenerative and fatal diseases. My illness was invisible to others but it was very real to me. I needed someone to take me seriously, to BELIEVE ME, and I needed to know what it was. It was early summer. The sun was shining, the birds were chirping and I heard the noises of children playing outside. My girlfriends were taking walks and I was lying in bed. I didn’t just lose my summer, I FELT LIKE I HAD LOST MY LIFE.

On the tenth week my husband and I went to a well known Clinic where I was diagnosed with CFS. and Fibromyalgia. I was relieved to have a diagnosis and to be validated by the medical community. I was prescribed one medication as though it would be the “magic pill.” I was optimistic that it would help me but I did not understand what would be ahead for me. I thought if I worked hard enough with diet, exercise and alternative treatments I could make the illness “ go away.” It did not go away. I had a diagnosis but the treatment seemingly was a guessing game, and cure, well, no one talked cure. The doctor who diagnosed me asked me if I was depressed and I said “No.” He said, “ You should be” I was soon to understand what he meant.

Now was supposed to be my and my husband’s time of life. Our children were married and we were going to travel and just hang out. It was an adjustment for our 32-year marriage because I didn’t feel I could be the wife I needed to be to fulfill those dreams. My husband felt inadequate because he couldn’t take the fatigue and pain away. Worst of all he felt like he had lost his buddy.

It has now been eight years of titrating on and off medications, some experimental, others repurposed under many different doctors care. I still struggle to manage my illness. I do not know what each hour of a day will bring until I meet it. I didn’t lose my life but I would be ingenuous if I did not say that I lost my lifestyle. I had been that solid, dependable energetic person for 55 years. Now I work to stay positive and forward thinking but for me unrelenting and profound fatigue, pain and poor stamina, cognitive fog remain not only a daily but also an hourly experience. I cancel plans and feel completely unreliable. My friends hang in with me with phone calls and tolerate my cancellations but I feel like they have moved on. When I do get out it is with the support of stimulant and pain medication. It allows me to put on my face of the well. I have a good time until the medication wears off and then I silently cry to myself “ Please get me home to lie down NOW!”

I am profoundly sad that myself and millions others have to endure this disease, but I angry that this disorder has been so marginalized, dismissed, ignored and misunderstood. The smartest and the most well-meaning people say to me, “You look so good. I can see you are so much better.” And the most painful of all is when you ask a doctor if they believe in ME/CFS and they answer, “Well at your age most people are tired,” All those nonverbal cues and vague replies imply, NO, THEY DO NOT BELIEVE IT AND THEY ARE NOT INTERESTED EITHER. They are men and women of science and without a definitive laboratory test or a reproducible biomarker that could be turned into clinical test, credibility remains limited.

ME/CFS is not a trivial disorder just a trivial name for a serious disorder. Nor is a psychiatric diagnosis or yuppie flu. For the millions of people who suffer from ME/CFS it is a debilitating invisible disease that does not disappear. It is almost 30 years since the search began to find the cause of ME/CFS and there is still no consensus on what it should be called. And while there is innovative clinical and laboratory research being conducted, for me it remains an hour-by-hour struggle I cope with alone in the midst of so many. Little I am or do anymore is by my own design.

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214 Comments on "Ceil’s Struggle With Chronic Fatigue Syndrome (ME/CFS)"

  • Cat Rotstein says

    Ceil. This raw and honest post about this toxic disease, ME/CFS, the incapacitating effects it’s had on your body, mind, and family for 8 long years leaves me profoundly saddened. I have other friends who have been suffering with ME/CFS for many years too. It’s absolutely gut-wrenching to me that after all these years debilitating symptoms, you encounter skeptisism and dismissive attitudes in the medical community. Your personal story detailing the effects ME/CFS has had and continues to have on your life is very powerful and moving. I hope your post is read by millions of people – How can I help this effort?