M.E. and I.

This is the final essay written by Betty Wilson, who suffers from ME/CFS/CFIDS, in her Sociology of Health and Medicine 323 course at Wilfrid Laurier University in Waterloo, Ontario, in 1992.
She graduated in the same year, having taken all her courses at home, (in Sarnia, Ontario) as telecourses, the first graduate in the university's history to have done it thus.
Her entire course of studies took 8 years, one or two courses a semester, but she did it all; her way! The essay was written in this narrative style at the specific request of her instructor, Dr. Juanne Clarke, who was at the time, researching the reaction of the public to chronic illnesses, especially CFS.

M.E. and I.

by

Betty Wilson

I have spent so many years learning how to write essays, adorned with quotes, footnotes and bibliography and styled in a fashion suitable to courses taken at the university levels that it is something of a wrench to write on a personal level. (I use the telephone far too much). Nevertheless, if I am to show how the Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalitis (ME), has changed my life, this is how it must be done. Fortunately, the year preceding my illness was such a particularly distinctive period in our family that recalling the details is much easier than it might otherwise have been. So this is where it starts: how I was, what I became, and finally the way things are.

Christmas 1985; our younger son, G., and his girlfriend SJ, both students at Waterloo, join us for our secular celebrations. G's gift to SJ is an engagement ring and an uncharacteristically halting marriage proposal. SJ just squealed her acceptance and it was eventually settled that they would marry the following summer.

SJ is/was Malaysian Chinese; her two younger brothers were, at that time, students at other North American Universities whilst her two sisters, were both back home with the parents. It was left up to us, therefore, to take care of the wedding arrangements.

Being irreligious, a church affair with clerical officiation was quite out of the question; we decided to hold the wedding in a city park flower garden, and the reception in our own back garden. SJ wanted a traditional Chinese red wedding dress so her mother arranged to have it made in Malaysia, which was one problem less. Her mother also took over the wedding invitations, having them printed in both official languages (English & Chinese!).

Once the date was settled, I got busy; booking the park and date, finding a JP, spending hours with immigration, (for SJ was still on a student visa) organizing the rest of the family; G's older brother, B, for Best Man, best friend, J, to return from Malaysia to be Bridesmaid. And so on.

Our garden, which was in the "English" style with trees, bushes, winding paths with flowers all along, still needed surgery, so, as soon as the weather was dry enough, we borrowed a rototiller (our digging days are done) and laid some sod for the rough spots. Then the planting of the annuals: I found out that, for the Chinese, white is a funeral colour, so I had to stay away from white flowers. By the time, I'd finished planting, over 700 had gone in. And it wasn't a big garden - the whole lot was maybe about a quarter acre - but it was certainly a busy one!

The house also needed work; all the rooms were repainted. I decided that the back hall leading out to the garden needed a new floor so I spent weeks yanking up tiles and softening the 30-year-old glue with the hair-dryer so it could be scraped off the floor base, then putting down new tiles. This took so much time that with the bathroom, I didn't bother pulling up the old floor covering; just put new tiles on top; and had a contractor refloor the kitchen and carpet the stairs. Also baked at least once a week - squares and cookies to be frozen until the big day. Also arranged with a caterer for sandwiches and cakes suitable for picnic-style consumption.

On top of all this, I was going,to aerobics class at least twice a week, I daily rode the, bike a minimum 10 miles and walked another 3. I kept up with my early WLU courses.

After it was all over, we took a vacation and came back all ready to write a book on how to hold an absolutely marvellous wedding for $800(Canadian) tops, but I decided, to help cover the costs of a growing interest in university studies, to take up babysitting instead. The chosen family lived nearby, had two children, 5 and 3 years old, was, pregnant again, and would pay me all of $100 for a 40-hour week. I was still able to go to the aerobics, and I had the children out walking every day, but, by the time the mother took her pregnancy leave in late February, '87, I too was ready for a break.

One week into my break, I developed a 'flu: elevated temperature, sore muscles nausea, the whole bit; this lasted perhaps a week. The symptoms disappeared,, but I was left feeling very tired.
Nevertheless, I decided to start walking again and, some 18 days after the 'flu first struck, I marched, off on my 1 1/2 mile circuit. It was slow going but I felt that I should be able to manage it. About 6 houses from the start I tripped, fell, and had to return home. The next day I went for the same walk and realized that I had developed 'foot drop', and had to make a conscious effort not to let my drooping feet trip me again. The worst part was the terrible fatigue; I just couldn't shake it.

Came the end of March and I could take no more; I ordered my doctor to make me feel better; to his everlasting credit, he took me seriously (I hope his God is reading this) and made an appointment with an endocrinologist in London, Ont.; one who had earlier successfully dealt with my thyroid problem. After one sessions he realized that my problem was out of his field and passed me on to a Dr. H, a neuromuscular specialist also in London.

By the time this appointment rolled around, my condition had developed well beyond mere fatigue: there was the muscular pain, especially in the legs, to an extent I could no longer ride the bike (a loss I really, really resented). My arms hurt too, but here the 'sense of loss' was not so great. I also noticed some odd sensations; a cold feeling running down one or another leg and when I traced this feeling with a pen, the line followed the deep nerve path inside each leg. Another oddity was the short, sharp, stabbing pains, that could come anytime, anywhere, that I later found out are known as "bee-stings'. The glands in my armpit were slightly swollen, and sometimes in my neck as well.

But these weren't the scariest symptoms; my brain seemed to have taken on the characteristics of a rather large ball of cotton batting; I couldn't think any more; I lived in a perpetual mental fog and thoughts and memories couldn't make their ways through, it. I would start jotting down some notes,and ideas for a paper or essay and I would run up against this brain barrier; I couldn't carry them to any logical conclusion. Or somebody would call up on the phone and I could answer perfectly well, but,30 minutes later would have no idea, who or why. Then, in July/August '87, I started having difficulties in swallowing; this weakness spread to my cheeks and mouth and I started to drool.

I seemed to spend most of that summer and fall in London, seeing Dr. H and undergoing a battery of diagnostic tests that eventually ruled out such glories of creation as Myasthenia gravis and Lou Gehrig's Disease. There was a whole selection Electromyograms (EMGs), on everything from large groups of muscle fibres down to single fibres, that showed only a few minor abnormalities but which ruled out some of the more gruesome fates for yours truly. A not unpainful muscle biopsy also showed nothing specific. It was,not until October when they did the NMR (Nuclear Magnetic Resonance) test, that the big breakthrough finally came.

NMR is a technique that uses the way a molecule resonates in a strong magnetic field to determine the relative concentrations of specific chemical groupings in the molecule. If that molecule is undergoing some process, then NMR can show what is happening by measuring the changes in the concentrations of the groupings. In my case, NMR showed that exercise (of my arm inserted into the machine) resulted in a swift depletion of oxygen as well as in the rapid and excessive production of lactic acid that is characteristic of an anaerobic metabolism; that my aerobic metabolism was largely suppressed.

This piece of evidence allowed Dr. H to diagnose Chronic Fatigue Syndrome; a condition, she told me, that had shown up, amongst other places, Cambridge University (with whom her researches had kept her closely in touch), in England, some three years previously; a condition from which no patient that she knew of had yet fully recovered; but a condition that was not fatal (it only felt that way).

What was I supposed to do now? Dr H tried to be helpful, but there wasn't that much that she, or anyone else could do except to give advice, treat the symptoms, and wait. One thing she did was warn me about was to avoid people with infectious conditions, as several journal articles had reported that patients with CFS had severely suppressed immune systems. A related problem that I experienced is slow healing; the muscle biopsy incision took some five months to heal.

At least I now had a medical explanation for my not doing things or going places. The excuse "Feeling tired" doesn't wear well for very long! and, after we had realized that a virus could be involved, I had been telling people that I was suffering from the effects of a polio-like virus and that I had to take things easy (it was the only way left for me to take them at all) This satisfied most people; after all, I had once been a nurse, and questioning a nurse comes right behind questioning a doctor in the expanded list of deadly sins.

I talk to my mother and sister in Northern Ireland every week and had kept them up to date on the progression of tests, and the polio story. In fact, our other daughter-in-law was the only family member who wouldn't accept my need for rest; she was certain that all I really needed was more aerobics and a diet of yoghurt. I have a few very close friends who also know about the tests, at well as the less pleasant conditions that the symptoms might have betokened. One, with whom I occasionally lunch, would now arrange it for a week ahead so that I could rest up for the occasion.

Now that we could put a name to it I could give friends and family (or its Canadian Twig at least) a fuller explanation. This, of course, elicited the usual questions: how did I get it? How long will it last? What can be done about it? And while there was general relief that it wasn't more serious, it was still puzzling, for nobody had ever heard of CFS before. Including my Doctor! This was most frustrating; was I the only person in the area with this illness? Dr H had told me that she had a few other patients with the same condition, but that none of them lived anywhere near here.

After the wedding, we had started talking, idly at first, about selling the house and moving into an apartment; we were both getting older and lazier; the installation, a few years previously, of central air conditioning meant that summer gardening was losing its appeal - the wedding effort had really been a last hurrah; the siren calls of leaf-raking and snow-shovelling were no longer so seductive; the strain of wondering which bit of the house would be the next to fall off was starting to tell; and besides, the house was now, thanks to the wedding, in as tiptop a shape at it was ever likely to be while we were there. Idle chatter rapidly turned to concrete discussion and the house was put up for sale in the fall of 1986, and sold the foll- owing spring. In retrospect this was an extremely fortunate move; a few months later, I would have been totally unable to manage the place.

As time went on, and I still hadn't died, I came to realize that I would have to make some effort to take back control of my life and the events around me. So every appointment was carefully marked on the calendar and I tried to avoid two 'date' days in a row, so that I could rest between them. When too many things cropped up in one week, such as dentist, doctor and hairdresser, I would have to excuse myself from at least one of them (too much school work, you know, - my sickness was not everybody else's business). I used to take the bus around town but that eventually became too much effort, so I started clustering the appointments into R's (my husband, typist, chauffeur) 'Happy Friday' (he has a 14-day 3-week). This worked quite well until April 1988, when there was a strike at the plant where my husband worked and, being salaried, he had to switch from research into production. He was locked in for a couple of weeks, until things settled down, then it was four days on, two days off, swing shifting 12 hours at a time, for the longest seven-and-a-half-months of our lives!

My CFS had affected my mobility quite badly but when I explained this to friends and neighbours, there was always somebody available to go out for bread and milk, etc. The company used some of its non- strike-bound employees to run a car service for disadvantaged family members of their incarcerated colleagues. I called once for some help; one of them came around with a car, took one look at me, decided that I was much too healthy to need his help, and left again. This was the only negative feedback I ever experienced in this state.

Over the next year small items about CFS would occasionally appear in the Globe & Mail, but they were always the sort of useless filler that papers use to fill out the odd crannies not occupied by advertising, and told me nothing. Then, in March 1990, the local daily published an article about a local woman, LD, who, before she'd contracted CFS, had been an occupational therapist at the University Hospital in London, Ont. The article mentioned her desire to get in touch with anyone else with the condition, and also the Nightingale Foundation in Ottawa as a source of information.

Within minutes of reading this, I was on the phone, calling the Foundation to beg for any information they had. I also called LD and talked to her machine. She called back two days later; it turned out that she'd had about 20 calls and that she had arranged a time and place for all to meet. 15 people turned up at that first meeting, eight of whom had actually been diagnosed ss suffering from CFSP by their Drs., the rest, hostages to rDs, (backward Drs.) who insisted on diagnosing anything from menopause, depression, boredom, to IAIYH (Its All In Your Head), or worse, to TTOTM (That Time Of The Month), were desperate for information and help.

The three men at the meeting had all been correctly diagnosed and had never been treated as dismissively as the women. Since that first meeting, many other people have shown up at subsequent meetings and the story is always the same: the women are too often misdiagnosed, and in a semi-contemptuous fashion to boot, but the men never.

I am rather demanding of our family doctor; all diagnoses treatments, prescriptions have to be discussed and arrived at by mutual agreement. He appreciates this, especially as I have some familiarity with medicine, and we have a good first-name relationship. So, when I first went and told him that I was not recovering from the 'flu, he took it seriously and was just as determined as I was to find an answer. When he made the appointment with the endocrinologist, he called him personally, and when I was referred to Dr. H, he called her and stressed that he KNEW that there was something physically wrong with me. And when L's support group got going, he asked me to keep him supplied with all the information they got, so he could stay up to date.

My background, (now some 30 years in the past) in nursing together with my WLU biology courses, not to mention my husband the chemist, meant that I had (or could get) some understanding of NMR, as well as some cell chemistry. In the process of trying to use these resources to help myself, I thought that I could try B12 injections. B12 increases the oxygen carrying capacity of the red blood cells and, in theory, should thus make some more oxygen available to the muscles. My Dr. agreed that I should try any reasonable treatment and this one does seem to have helped. I know about the placebo effect, but my doctor thought, and I had to agree, that if it works, it works; so now I have a shot every two Weeks, and every week in more stressful periods. I even take a letter from my doctor and bottle of B12 on vacation with me.

My mother is one of those people who are inclined to tell anyone with vaguely defined complaints simply to 'snap out of it'. For my first visit after contacting the Nightingale Foundation (named after the famous Florence, who is thought to have had this illness), I had armed myself with all sorts of literature, but it turned out to be unnecessary there had been a lot of publicity - programs on the BBC and such - prompted by the fact that the first woman to sail around the world single handedly had contracted CFS shortly after completing her journey, and had had to be taken to Buckingham Palace, for an award, in a wheelchair. So, when I started talking about it my mother said that she had been on the point of asking if that was what was wrong with me!

I have been very lucky as regards the acceptance, by others, of my limitations; I have never had to deal with the disparaging remarks that so many others have experienced. (My husband told me of one of his colleagues who dismissed CFS as a medical conspiracy aimed at selling more drugs, and that all I needed to do was to diet and exercise. This colleague, who was an extremely busy chap, with never the time to read anything unrelated to his profession, had obtained this nugget verbally over a backyard fence.)

After 5 years I'm not really sure if the muscle problems have abated somewhat or whether it is just that I have learned how to cope so well that it is now second nature. Whatever the reason, things do seem to be much better; the foot drop, swallowing and drooling conditions disappeared quite early; I adjust to physical effort by pencilling in extra rest periods before and after any unusual exertions; on vacation, we plan nothing for 2-3 days after travelling. Schoolwork, however, is still a problem; in the morning, I can study for a maximum of 20 minutes, then I have to take a 20 minute break, then it's back to studying for another 20 minutes.....and this goes on till lunch.

In the afternoon, I'm lucky if I can manage 10 minutes at a stretch; after a while the cloud descends, my short term memory takes off for parts unknown, and I am done for the day. Whoever invented 'stick-up notes' has my undying gratitude; I go through vast quantities reminding me where to go and what to get and when.

My course results have suffered somewhat, especially in the exams. One course, the marks for which depended solely on several 3-hour exams, could have been a disaster, but, luckily, I scraped by. In the great majority I have managed to keep a reasonable mark with the assignments.

I know husband is typing this, but he has to do this part without objection. [TYPIST OBJECTS ANYWAY] He has been terrific and a great support. [TYPIST BLUSHES FURIOUSLY] He has to do most of the house- cleaning, dish-washing and, at weekends, the cooking too. He does much of the shopping and helps with the laundry. [TYPIST NODS SAGELY] But, perhaps the most important of all, he is informed about CFS and knows when to stop me doing things. He has been a tremendous support in my bad days, when I'm so thoroughly fed up with all my aches and pains. [TYPIST WILDLY WONDERS WHAT THE HELL ELSE HE COULD HAVE DONE].

Some of the people in the support group get no help at all from their families; we can almost see them sliding further downhill every month. We do what we can to try and bolster them suggesting strategies for coping, but it is not enough. I wish we could promise them a light at the end of this tunnel, but we can't really; if there is one at all, only a few have ever reached it; and it is never as bright as the one at the beginning.

FINIS

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