Share your feelings, frustrations. Teach others about yours, learn about theirs.
This is the story of my journey into Myalgic Encephalomyelitis.
It began with a bad episode of Glandular Fever in my early sixties. My throat was so sore that it hurt just to swallow, lymph glands under my jaw were swollen and tender, and my body was extremely weak. The diagnosis given by the doctor at the emergency room was Follicular Tonsillitis. My condition didn’t improve, so I consulted a doctor at a private practice. (My own doctor was on vacation.)
Blood tests revealed high levels of the Epstein Barr virus, the virus that causes Glandular Fever. The same tests also revealed that the virus had been in my body before this episode of Glandular Fever. I probably contracted it as a small child, at a time of life when symptoms are so mild as to be unrecognised or recognised as a very mild cold. The virus, once contracted, never leaves the body, but it usually lies latent and doesn’t cause further problems.
A few years later the illness presented again. I actually remember the very moment I suddenly felt ill and weak. I went straight to bed and slept intensely for twenty-four hours. It was a few weeks before I recovered fully.
These episodes became more and more frequent, until each attack ran into the next. My doctor said there was no point in taking bloods again as, “We know it’s Glandular Fever. Your symptoms are the same.”
I turned seventy and wanted to visit my only sibling, my brother who lives overseas. I decided that I would exercise to be fit for what was to be my last visit to my brother.
My husband booked tickets for the two of us to fly out at the end of March (2020), and he and I made a determined effort to build up my strength for our holiday. We started with a casual walk in a nearby park, and two nights later I felt myself getting sick with the usual symptoms. I woke up twenty-four hours later, feeling rotten. Three weeks later we tried a second, less demanding walk. Two evenings later I had another relapse. Once I felt better again, I decided to go for just a short walk in the neighbourhood. After only a few meters I realised that I had run out of energy.
Now I insisted on blood tests. My doctor phoned me a few days later to say I had very high levels of the Coxsackie virus. “That’s the reason you felt like you did,” he said. “The Coxsackie virus gives you the same symptoms as the Epstein Barr virus.” He said I had a “Coxsackie virus infection.”
“What can be done about it?”
“It’s very complicated. I’ll have to do some research and discuss it with my colleagues.”
The following day our President announced that the country was to lock down on account of the first internal spread of Covid 19. The medical fraternity frantically started to prepare for the onslaught of Covid cases by altering their rooms, creating one entrance for suspected Covid cases and a separate entrance for other cases. My doctor never came back to me with an answer.
Next, the airline cancelled our tickets in an attempt to stop the spread of Covid 19. It was just as well.
“I wouldn’t have made it anyway,” I conceded to my brother.
It was becoming more and more difficult to get out of bed in the mornings and I was arriving at work later and later. Eventually I found that I couldn’t even make it to work on some days – I was just too fatigued. (Thank goodness my boss is a very casual guy, and didn’t mind granting me flexible working hours.) During this time I also developed the strange habit of lying down on the carpet, usually during TV commercial breaks, simply because that’s what I wanted to do. I didn’t associate this need with anything and told my husband not to worry and that there was nothing wrong with me. He accepted this quirky behaviour just as he has always accepted my sometimes unconventional ways.
My final attempt at getting fit was arranging for very low-key Pilates training with a teacher who knew me well. She understood my predicament and we proceeded very, very slowly. After several weeks I completed a full session of Pilates for the first time and was delighted to be feeling fit and healthy at last. But two nights later… I "crashed” again. This word is commonly used to describe the sudden impact of a major relapse which occurs every time one does more than the body can take.
I was bitterly unhappy when one day soon after that I found I did not have the energy to walk from the bedroom to the bathroom without having to sit on the floor mid-way and wait for my strength to return. I also started to experience dizziness.
In desperation I consulted a specialist doctor and told her the whole story. She didn’t hesitate to say, “Without a doubt you have ME (Myalgic Encephalomyelitis).”
I had never heard of ME but I was thrilled to get a diagnosis, to know that what was happening to me actually had a name!
“Will I get better?” I asked.
“Y-e-e-ss,” she said cautiously, but you’ll have to ‘live slowly’. Start today by resting in one place and don’t get up except to go to the bathroom.”
Since then I’ve learned a lot about the illness, more commonly referred to as CFS/ME. It arises from a deficiency of energy due to dysfunctional mitochondria whose job it is to feed energy to one’s cells. In my case it was caused by two viruses in my body: the Epstein Barr virus (which causes Glandular Fever) and the Coxsackie virus. I was advised to watch the documentary, "Unrest", on Netflix. It deals with severe cases of ME, but the doctor in the film mentions only two viruses, the same two that I have.
In order to live more easily with the illness patients must by trial and error, and preferably with their specialist doctor, assess how much energy they can expend before they have a relapse and then ‘put that energy in an envelope’. They must never push the envelope. Expending more energy than your body has will result in a relapse. (Researchers at Stanford University say that each relapse causes one to have a lower baseline of energy.)
I managed to keep relapses away by doing very little and taking frequent rests. After a while I questioned whether I was perhaps being lazy and taking it too easy, whether I should be doing more to build up a little more strength. I put myself to the test twice: The bathroom door needed a good wipe-down. Halfway through the job I felt a sharp reduction of energy, but continued anyway. This led to a bad relapse, a crash! Sometime later this “lazy living” was making me so guilt-ridden that once again I took a risk. I cleaned and dusted until my body told me it was enough, but pushed on nevertheless. That was by no means a good idea! I paid heavily for having ignored the warning signs.
Since then I have indeed been living slowly and managing to accomplish very little: I cannot cook a meal, do the shopping, clean the house or do the laundry. If I’m feeling strong, I can make myself a cup of tea or help myself to food but if not, have to rely on my dear husband to bring wait on me. He has been graciously obliging. All household and outside chores rest on his 74-year-old shoulders.