THE GLASS CAGE: Hepatitis B & ME/CFS

THE GLASS CAGE
by Dr. Clare Fleming

The following article is reprinted by kind permission of the author and the British Medical Journal 19th March 1994, vol 308, p 797

I live in a glass cage. Often I seem to be so well, so only those close to me see the extent of my disability. Indeed, within the prison of inactivity, there are moments when I feel relatively well. Yet the invisible walls around me are inpenetrable. Beyond them lies a barrage of symptoms and the further I push myself, the greater the deterioration and the longer the recovery time: hours, days, even weeks.

My cage is myalgic encephalomyelitis, one of the chronic fatigue syndromes. I was a general practitioner when the first symptoms appeared three years ago, shortly after I was immunised against hepatitis B. The following month I developed glandular fever and my illness began in earnest, with multiple symptoms which continually varied in intensity: sore throat, swollen glands, fatigue, "brain fog", malaise, myalgia, muscle fatigue, fasciculation, sweats, postural hypotension, alcohol intolerance, poor concentration and memory, emotional lability and loss of atopic response.

Words can lie comfortably on the page, distanced by medical terminology. But this list invaded my life. Myalgia: the pain and the exhaustion of the walk from my bed to the bathroom took half an hour to subside. Fatigue: my husband carried me downstairs for Sunday lunch but after one course I fell asleep, exhausted. Poor concentration: reading or watching television was often impossible. Emotional lability: at random my usual cheerful, confident self self exchanged repeatedly with an unfamiliar negative, fretful character.

At first I fought the symptoms, attempting to overcome the disease by positive thinking and sheer determination. After nine months of set backs and fruitless struggle I was drained to the point of feeling death would be a relief. I sank into depression, a disorientating experience quite different from other stages of the illness. This rapidly passed with treatment.

I changed track, wondering if my disease had a psychosomatic basis. So I decided to try psychotherapy and rummaged through the cupboards of my psyche. It proved to be a challenging and rewarding experience but not the answer to my predicament. A heavy cold intervened and triggered a relapse, which was more severe than the original illness.

Medical training had not equipped me to understand myalgic encephalomylitis and so far my attempts to defeat the disease had failed. I had consulted a general practitioner, who provided certificates and referrals: a physician, who diagnosed chronic fatigue syndrome and treated a persistent infection: and a psychiatrist, who offered tricyclics and time. Yet despite their care and concern I still lacked the thing I needed most – advice on how to manage my illness.

It came eventually from outside the NHS, from Westcare, a supportive clinic for people with myalgic encephalomyelitis. "Treat this illness as if it were ‘flu; rest is the key. Do no more on a good day that you can manage on a bad. Reserve energy for your body to use for healing itself". Listen to your body – advice I had so often dispensed but had failed to apply. Working as a junior doctor I had learnt to operate beyond sensible limits, and life since then had continued to deal me a tough hand. In adapting and surviving I had ceased to listen.

I began to read about myalgic encephalomyelitis and encountered widely differing opinions. I was already aware of the dangers of bedrest and several articles convincingly explained how the symptoms of the condition resulted from inactivity. Yet listening to my body told me otherwise. Why should grappling with paperwork cause postural hypotension, or walking upstairs result in expressive dysphasia? When my levels of physical, mental or emotional activity exceeded my limits all my symptoms increased. When I rested I improved.

Managing myalgic encephalomyelitis is like operating a building society account. The higher the balance, the faster interest accrues. Regular withdrawals lessen the amount earned and larger withdrawals incur overdraft charges. I have learnt to avoid overdrawing my energy account and to accept that I cannot control my interest rate. Nature sets the pace of recovery. My job is to ensure that I do nothing to impede this process. If I had understood this earlier I am certain that I would be back at work by now.

Instead I had relapsed, to the point where even 23 hours a day in bed was not sufficient to keep the symptoms at bay. My husband was wonderfully supportive and we employed help but, with pre-school children, peace was elusive. My consultant suggested inpatient treatment, but the specialist unit was 120 miles away and the money for extracontractual treatment was not forthcoming. Instead I cut myself off from the outside world using deep relaxation and contemplative prayer. For an active, independent, impatient extravert it was a tough lifestyle, but I was determined.

Slowly, intermittently, recovery followed and my body started to respond differently. A significant advance occurred when I altered my diet. I kept a progress chart, which helped me regulate activity and retain objectivity.

First came a sense of control as the constant variation of symptoms lessened. Next, recovery times shortened. At last, after being virtually bedridden for 15 months my limits have begun to increase. I no longer use a wheelchair and an afternoon rest is usually sufficient. My immune system has altered with the return of my atopic rhinitis after a three year absence.

I long to surge ahead, but my glass cage, though expanding, remains firmly in place and any attempt to break through it is penalised with a setback. I started like Aesop’s hare and have had to learn to be a tortoise. Like the tortoise I will win in the end.

Illness cost me my job, my social life, my role in the family, my access to activity and my ability to rely on my body to function predictably. In place of doing I had to concentrate on simply being. I was confronted with myself and had to conquer frustration, anger, guilt, pain, self-pity, envy and despair. I have struggled reluctantly up the path from denial of illness to a place where I can accept my disease and appreciate the way this devastating experience has enriched my life.

Research has confirmed that myalgic encephalomyelitis is a disorder of the immune system and central nervous system, yet many doctors continue to be sceptical. I encountered undermining attitudes and harmful words. Thankfully, however, for the most part my professional advisors, family and friends believed and supported me. My recovery is underpinned by their acceptance and encouragement.

Sadly many others with myalgic encephalomyelitis are not so lucky.

Source: Perspectives June 1994 Tweet