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One day at a time

by Mary Jahne

In this key chapter of Mary Jahne's moving autobiographical work, The Bitter and the Sweet, she describes her battle to come to terms with the transition between life as an "ordinary" person - wife, mother, hardworking teacher - and that of a housebound and bedridden CFS sufferer. On the way she learned about dealing with her limitations, the perennial problems of "how much exercise?", coping with guilt feelings, and the need to find patience, acceptance and a new way of looking at life.

The lessons of time and experience || The exercise problem
Living in the here and now || Poem: "One day at a time"

Publication details || Update

The lessons of time and experience

Freedom of choice is something we humans rate highly, although we often tend to take it for granted. We make choices daily, often unaware that we are exercising this ability that is the culmination of reason and deductive thinking.

Freedom of choice is a luxury the CFS sufferer can no longer afford. This precious power or right, which I had often taken for granted, now had become one of the losses that I grieved for the most. This illness had, through its devastating effects on my body and my life, robbed me of the ability to make choices. My body and energy levels dictated my actions, my inaction. I had lost all semblance of control over my life. This is what I envied in my family and in every healthy person whom I encountered. They could exercise the right to choose in all aspects of their lives while my choices had been diminished to what book to read, what CD to listen to, or what to write. On some occasions when my symptoms were at their worst, even these scant choices were extremely limited. My independence was severely curtailed and I strongly resented this development.

In retrospect, it has become fairly obvious that when I first began to reap the benefits of my months of enforced bed rest, I grasped with both hands the ability to once more make some choices. I saw this as an opportunity to regain some degree of control over my life. I failed to take into consideration the fact that the repercussions of those choices might be detrimental to my long term progress. In my enthusiasm to wrest back a minimum of control I had bitten off more than I could chew. In making the decision to venture out into the world again, I perceived that the gains by far outweighed the price that I would be asked to pay.

In the beginning, this proved to be the case. However, buoyed with success and a latent desire for some form of power over the restrictions of my existence, my decisions were obviously not all wise ones, as my resulting relapse proved.

One of the frustrating aspects of CFS is that there appears to be no warning signs, no flashing lights to alert you to the fact that you have reached that fine line between coping and over exertion. One minute you feel that you are capable of performing a certain task, the next, you are completely exhausted and the damage is done.

The temptation to extend that little bit further is ever present. The fact that your energy levels oscillate from day to day means that choices which involve the use of energy often lead to disaster. I would hazard a guess that this is one of the prime reasons so many sufferers succumb to activities that inevitably lead to a relapse. It is one of the pitfalls that a CFS sufferer encounters and has to learn to live with. I knew that rest was essential to my recovery, but I found that at times I wanted to test my limits.

The need to exercise choices, as well as the ability to fend for myself, often led to disastrous consequences. This facet of my illness was very difficult for others to comprehend or come to terms with. This is not surprising, I suppose. I found it hard to accept myself.

My ability to spend a couple of hours out of bed one day and to do a few light household duties like folding up the washing, led to scepticism when, the next day, my lack of energy severely hampered any activity. People I saw on a three of four monthly basis, couldn't seem to desist from proclaiming, "Oh, are you still in bed? I thought you'd be up and about by now!"

This would lead to numerous questions that ranged from the competency of my doctors, my treatment - or lack thereof - to my own contribution to my recovery. Through my reading I had learned that I didn't need to wear these "guilt trips". I knew that my illness was an unpredictable, long term fact of life, but others, especially the uniformed, could not conceive of a malady that could last for years. I was reluctant to believe it myself, but this didn't come into the equation at all. The facts were staring me in the face, in my own case, as well as in the few documented case studies I had read about.

My choices were few, my life stolen from me, my options restricted. I had to accept that for an unknown number of years, my life was to be in obscurity, on hold, or extremely limited. This knowledge, though difficult to admit, made it easier to live with the many setbacks that resulted from my disastrous choices. I forgave myself on the grounds that the hope and freedom that had been dangled in front of me was worth the risk involved, if it attained for me some of my former ability to live my life without the dictates of my crippled energy levels.

Instead of feeling guilty I felt disappointed, discouraged and disheartened. I refused to let guilt eat away at what self-esteem I had left. While each obstruction to my progress tended to make me more cautious and apprehensive about trying a new venture, I made the resolution that I couldn't give up without a challenge - no matter how small, or I would eventually just shrivel up and die. Of course I had to be sensible and not try anything that was too outlandish. Time and experience were valuable teachers.

I have always met adversity head on. It is not in my nature to bypass the rocky road or seek the easy option - a trait which inadvertently led to my present condition I suppose! Apart from the occasions when depression, self pity and anger robbed me of the capacity to feel positive, I viewed my enforced rest as one way of enabling my body to return to some form of normality, eventually. My writing, music, and reading helped to pass the time in a constructive way.

CFS changes the way you think and measure success and failure. The most minute of successes becomes a major victory and , by the same token, a mere setback can be a major disaster. I had to learn to put the calamities behind me and concentrate on my meagre accomplishments instead. Not the easiest of tasks to be sure, but definitely necessary, if I was to retain any form of sanity for the duration.

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The exercise problem

One of the realities of many months of enforced bed rest was that my muscle tone was nonexistent. My muscles had wasted away. This was only to be expected I suppose under the circumstances. When I had reached a stage whereby I was able to move around the house with ease I decided that it was time to do something about it. I began by just tensing then relaxing all of my muscles as I lay in bed. I only managed to do this two or three times a day in the beginning but after a few weeks I was gradually able to build this into a routine of three or four times and hour.

Light exercise was recommended in a couple of the books I read. It was however, stressed in the strongest of terms, that the sufferer keep any physical activity within their own limits and avoid reaching the point of fatigue and total exhaustion, as this would only result in rapid deterioration or a possible relapse.

Walking was recommend for those who could manage it. Commencing with short distances and gradually increasing, all the while keeping in tune with your energy levels. This advice made sense but walking was out of the question for me as I could not support my body for any length of time in the first two years of my illness. I could barely make it out to the mail box and back without feeling exhausted. I realised that I needed to undertake some form of exercise in which my body was supported so that the energy I used was being utilised for the benefit of my muscles.

In the study there sat an exercise bike that had once belonged to Roland's Dad. It had been gathering dust for almost two years. Despite good intentions neither of us had put it to use. This instrument of torture suddenly provided me with an answer to my diminished leg muscles. Its days of idleness were over.

My first attempts were fairly paltry. With no tension what so ever on the wheel, I could just manage to pedal for a minute before I began to show the signs of exertion. My heart rate would increase. I'd be gasping for breath and beginning to perspire, if I went on for any longer. Not to be daunted however my poor performance only served to spur me on. Each day I exercised. Progress was exceedingly slow but my determination kept me at it. I spent my minute on the bike and as time went by I was gradually able to increase this time slightly. With in six weeks, I was able to last for five minutes a day. I began to feel a little stronger on my legs. They no longer looked or felt like jelly.

As I increased my time and durability I found that, in order to sit and pedal for any length of time, I needed a distraction from the continual pumping movement of my legs and the agonising protest my muscles were issuing. Once again Michael Bolton came to the rescue, this time in the form of music videos that Carmen had bought me for Christmas. Now instead of watching the hands of the clock dawdle around the dial, I watched my favourite singer as he performed and sang his way across the screen. I began timing my self to songs instead of minutes.

Some days, for some inexplicable reason, my legs would not cooperate with my will. I would reach my limitation in a shorter period of time. When this happened I stopped. There was no pattern or reason that I could determine I had to play it to the dictates of my body.

Despite the fact that this aerobic exercise was paying dividends as far as my muscle strength was concerned, it made no discernible difference at all to my energy levels. This was disappointing, as I had optimistically held the hope that it might have helped me regain some of my former vigour or at the very least, increase it a little but this was not to be. On the other hand, it did not appear to be impeding what minimal progress I made in the beginning. So I continued with the routine which I eventually was able to extend to include a few mild floor exercises. After several months, which included some setbacks, I was finally able to exercise for twenty minutes a day. I considered this sufficient for my needs but unfortunately I was only able to sustain this for a period of about six weeks. Then without warning, I suffered another relapse, and was unable to do any exercise for quite some time. I decided after that to do what I could, when I could, making moderation the key. I persevered with it on the days that it was possible because I didn't want to relinquish what little progress I had made. I found it extremely frustrating and discouraging, when on some days my level of energy was at such a low ebb that I could barely manage half of what was possible prior to my relapse. There appeared to be no rhyme or reason. Eventually I was unable to do any at all and so I was forced to admit that this was no longer a feasible proposition. It was another choice that I was forced to rethink. Once more the exercise bike went into retirement.

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Living in the here and now

One thing that was said to me constantly by doctors, family, and friends, and also mentioned in some books on the subject was, Just take it one day at a time. In the beginning I don't think I put too much store in this comment. It just seemed to me to be another of the platitudes that people say to the ill and the grief-stricken.

I have never been able to live just for the moment. No matter what was happening in the present, part of my mind was able to work on either the past or the future. It was as though I was operating on a multi-faceted level. I liked being busy and productive. I had plans for the future, dreams to fulfil, roads to travel, places to see, new horizons to conquer and experiences to savour. Like most people, my calendar was marked with future events to be enjoyed and deadlines to meet. My future was planned, though not so stringently that I was averse to a deviation or two along the way - it wasn't carved in stone. It was flexible. I just liked to be prepared, to know where I was headed. I couldn't sit back and let things happen. Roland always maintains that I don't know how to relax, that I drive myself too hard. I have to admit that he is probably right.

CFS became the brick wall that I rammed into - head first! It was the veritable immovable object. No matter what tactics I employed to surmount or overcome its devastating effect on me the fight was doomed to failure. Eventually I came to understand and accept, that by following every instinct and fighting this debilitating intruder into my busy and organised life, I was only prolonging the inevitable and doing myself more harm along the way.

As CFS took control of my body I literally saw my life and future crumble before me. My mental calendar, marked with future events and agendum, was wiped clean to become instead a blank never-ending piece of paper. When I eventually succumbed to the reality of my condition I submitted myself to the one thing that would aid recovery - total bed rest. I began to accept the wisdom of the One day at a time theory. It was the only way that I could cope with the void that represented my future.

One day was just like the one before and the one to come. I found that the establishing of small routines helped to auspicate some form of normality into my days. It helped me to distinguish morning from afternoon, day from night, and prevented, to some degree, boredom becoming my task master. Of course in the first six months or so these routines could only include sleep, shower, meals, reading, music, television and on occasions, writing. As my condition began to improve a little I added exercise, knitting, cross-stitch and the odd light household chore, until I unintentionally over did it and another relapse took its toil. Then I would slowly start again, trying to inject a little more common sense and trepidation to my endeavours.

As the months slipped by, my moods reflected the full gamut of my emotions. The highs and lows, with every stage in between, would chop and change with the speed of lightning at times. Occasionally I could attribute them to an incident that had happened. Other times they caught me unawares. Likewise, my energy levels and the symptoms I suffered were just as erratic. I could not predict from one day to the next, how I'd feel - both emotionally and physically. So I guess treating each day as it came made a lot of sense.

I had long since learnt, to my cost, that setting targets or goals was doomed to failure and brought with it only disappointment, disillusionment and depression. My experimenting with outings had not been an unqualified success but I had learnt from it. While the occasional outing, if carefully planned and not too taxing, could add a little zest to my life, Moderation in all things, seemed to be the key. This is not a motto to which I had subscribed in the past, I've always been the All or nothing type. However, I eventually realised, somewhat reluctantly I might add, that this is one aspect of my personality I have to change. The aftermath of my exercising ventures brought that home to me in no uncertain terms!

I think I shocked my husband Roland when I mentioned that I no longer thought of my future in either the long or short term as I had nothing to look forward to, I just concentrated on the present. He immediately tried to impress on me that I would recover and that I must not indulge what he saw as a defeatist attitude. I suspect he was trying to convince himself just as much as he was trying to convince me. I tried to explain to him that I hadn't given up hope, but that this was one of my coping mechanisms, to assist me across the barren wasteland that was my future.

As deserts eventually give way to the sea I knew that I would not stay locked in this state forever; but for an indefinite period of time I was stranded midst the sand dunes. Metaphorically speaking, if I set my sights on the crest of the dune ahead of me in the hope that it would grant me a glimpse of the ocean on the horizon, I would be setting myself up for a fall. By accepting my present situation and not projecting certain achievements onto a future time schedule, I could not be disappointed when they did not eventuate. I'd been down that road and it had proven futile. My recovery rate was working to a hidden agenda. I had to be content to just trudge through the sand, one step at a time. Despite this way of thinking that certainly helped me to cope, Roland was not convinced. So we agreed to disagree.

As the months passed and I could see the small improvements, I was fully aware that I was not going to leap tall buildings in a single bound, but that I would progress slowly, one step at a time, with the occasional obstruction along the way. My health would return in its own sweet time. My setting goals would not hasten it one iota. By living only in the present I was protecting myself from the pain of what I could only relate to as a failure when my progress targets were not met or realised.

I know that this was a hard concept for Roland or others to come to grips with, but I suppose it's similar to any other of life's situations or experiences. Unless you have actually experienced it yourself, you cannot fully comprehend or empathise with the plight of another. You can use your imagination to try and place yourself in another's shoes but without actually living it, you can't fully appreciate what someone else is feeling.

Knowing this, I didn't discuss my situation very often and when I did, only with a select few. There seemed no point in burdening others with something they couldn't understand.

This often made me feel very cut off and isolated. I felt that I was on the perimeter of life, an observer only - like a sick child with his nose pressed up against the window pane as he watches his peers playing outside. He can see what is happening and encourage them along but he cannot participate and so remains ostensibly on the outside, looking in - he is on the sidelines. This is basically how I saw my position in relation to my family and friends. They were all still on the roller coaster of life - I had stepped off for awhile. I could watch and share their experiences second-hand but I had a very limited, active rôle to play in their lives.

Contents

Contents

Living with Chronic Fatigue Syndrome: the bitter and the sweet;
©Mary Jahne 1997; ISBN 0-646-34388-2
Published by Wordweavers, 242 Elder Street, Greensborough 3088 (03) 9432 2343;

Available from the ME/CFS Society of Victoria Inc., 23 Livingstone Close, Burwood, Vic 3125. Phone: (03) 9888 8798; Email: mecfs@vicnet.net.au
Price: $22.00 plus $4.00 postage and handling.

Update

After four years confined to bed, Mary's health improved somewhat, although she could not return to teaching. During her illness she started to write, not only her autobiography The Bitter and the Sweet, published by Wordweavers, but also Church Graphics for all Occasions, a collection of the designs for banners and booklets she had produced when a Religious Education Co-Ordinator. She later had a second book of her designs Church Graphics for Liturgical Use published by HarperCollins Religious.

Read Mary's profile on the HarperCollins Religious website. She tells about her illness and her writing, and concludes: "My health has slowly improved with time and while I must be ever vigilant in how I expend my energy, I now have my life back. I have been blessed with a wonderful family and friends. I believe that while CFS created much havoc in my life, it has also brought about many positive changes and opportunities. I can truly say that God does work in mysterious ways."

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