Catherine’s story

In this chapter a patient will give her account of the lead up to her CFS illness, her experience of the condition, and her view of CBT. This will be interspersed by my commentary, which will describe the course of treatment, including the difficulties and dilemmas encountered. Catherine’s story begins:

I was in my fifties and, apart from the usual annual cold, the odd ‘tummy bug’ and a couple of bouts of proper flu some thirty years ago, I had hardly ever been ill in my life. I lived alone as my partner had died 15 years ago and my children had married and left home. I was working full time in a busy middle management job, doing all the household chores and tending a large garden without any trouble or any outside help. I was physically fit, exercised regularly and clocked up over 1000 miles a year cycling to and from work.

That summer I started my three-week break from work doing some much needed decorating at home and I began to feel unusually tired. I told myself this was to be expected, I was not as young as I used to be and had been working very hard lately; so I just got on with the decorating knowing that I would be glad when it was done. As I stood back to admire my efforts I felt very, very tired. This was not a normal, almost pleasant, tiredness but complete exhaustion.

(It is common for patients to differentiate between the normal tiredness that can occur and the fatigue of the condition.)

I decided to rest and regain my normal energy, but this did not happen. Instead of feeling refreshed and energetic I began to feel ill.

(Patients often try to manage their tiredness by rest but this may not work.)

116A sore throat appeared along with a headache, aching muscles and a feverish feeling. I told myself that it must be a summer cold coming. But the illness did not develop into a cold, it persisted just as it was and I began to suffer from a wheezy cough every time I lay down. This kept me awake at night and I finally visited my GP where a diagnosis of ‘chest infection’ was made. I was prescribed antibiotics, my holiday ended and I returned to work feeling disappointed, unrefreshed and less than well.

Over the next two months I failed to get any better and two more bottles of antibiotics were prescribed, with no effect. I began to feel more and more ill and found that the effort of cycling to work was starting to sap my energy. So I finally did something that I had never done before; I allowed myself a ‘self certificate’ week off work and rested for much of the time.

(Some patients never allow themselves to have time off work.)

This did make me feel a lot better and I returned to work expecting to feel properly well within a few days.

Sadly, after two days back at my desk I felt worse than ever and I started to worry that there might be something seriously wrong. To get to the staff toilets I had to climb a flight of stairs. I used to be able to run up the stairs but all of a sudden my legs felt like stone and I had a real struggle to visit the toilet. I decided to go back to see the doctor where various blood tests were taken, but they all came back ‘normal’. Finally I was sent for a chest x-ray and then told that I had adult onset asthma. I was prescribed steroid tablets and inhalers, patted on the back, and told it would settle down in time.

For the next three months I forced myself to carry on normally even though I felt exhausted and ill.

(This can be a typical coping pattern.)

I told myself that lots of people cope with asthma and I was just being silly. I took the steroid tablets as instructed and the cough went away but the awful flu like feeling was still there and I began to suffer from drenching night sweats, abdominal bloating and troubled sleep. I also had pain in my torso, shoulders and arms. There were tender spots that, if touched, felt as though they were bruised or stung [like wasp stings].

Back at work in the New Year I had a little more energy and decided to take myself in hand. I spent a small fortune on vitamin and mineral supplements and started exercising two or three evenings a week to try and get 117fitter. It was then that I noticed that my muscles hurt during the exercises as well as afterwards. I used to enjoy exercising but it had become painful and my energy was so low that I had to push myself very hard.

(It can be difficult to judge what the correct level of exercise is.)

After about a week of my new regime I began to feel awful again, but I hid how I felt from my work colleagues and denied it even to myself. This went on for some weeks and then one day I was sitting at my desk and the telephone rang but I hadn’t the energy to answer it. Instead I started to cry and my boss told me to go home. It was such a relief to get home and lay down. I told myself that tomorrow is another day and I would feel better.

However, instead of feeling any better I started to feel so poorly that I was unable to go to work for a whole week at a time. There seemed to be a sort of pattern to the illness. I felt more or less normal after resting for a couple of days, went back to work, got tired and then spent the next few days feeling extremely ill. In fact I had never felt so ill before in my life. There were many times when the effort of making myself a hot drink used all my energy and I was forced to lay and watch the drink go cold, not having the energy to pick the cup up and drink it. A new doctor cut the steroids out very gradually and, as this happened, I realised that they had been masking what was now a serious infection. I had an excruciatingly sore ulcerated mouth and throat and a hideous widespread rash that developed into blisters that were two inches across in places. The GP did some blood tests that were normal.

By now it was spring and my previously booked holiday in Majorca was a few days away. My legs felt like two blocks of concrete hanging from my hips, my arms felt so heavy that I couldn’t move them and I collapsed on to my bed and cried bitterly. There was no way that I could go away feeling like this. My holiday had to be cancelled and I spent the Easter break resting in bed and trying to keep cheerful.

Over the next few months my GP referred me to three different specialists, without anything being found.

I decided to put all my limited energy into my job, as concern had been raised about my attendance. Sadly my memory began to fail me and I had to keep a secret ‘diary’ of every conversation and telephone call. At the same time my thinking, which used to be crystal clear, became ‘muzzy’. Work started to pile up as my decision-making skills deteriorated and problems that I once solved easily now appeared exhausting and insurmountable. I also started to feel faint quite frequently; my body was telling me 118something but I was not listening. I was not the sort of person who got ill; this was a total nightmare.

Then one day I felt much better. I had a burst of energy similar to that experienced by a woman just before going into labour. I went shopping on my way home from work but half way home I suddenly felt faint while riding my bike and I fell off and collapsed in a heap at the side of the road. My shopping rolled down the hill behind me never to be seen again. A passer by took me to the doctor’s surgery where my injuries were treated. Fortunately I was not badly hurt, just minor cuts and bruises, so I was driven home and told to see my GP next day. I was seriously shaken by my collapse and determined not to have a repeat performance, so in the morning I telephoned my boss and told him that I would not be back until I was better. I never returned to work.

After examining me yet again my GP referred me to a Rheumatologist who examined me and I winced when he pressed on my painful areas. Then I sat by his desk and he looked at me over his glasses. ‘You have got Chronic Fatigue Syndrome’ he said. I was relieved to have a name for my illness but I had never heard of the condition so I asked him to listen to my list of symptoms again so as to be quite sure.

The Consultant sat and nodded as I listed my malaise, overwhelming fatigue, feverish feelings, migraine headaches, permanent sore throat, muscle aches, painful areas on my body, poor sleep, muzzy headedness, fainting attacks, poor balance, abdominal pain, bloating, coughing, wheezing, skin rashes, night sweats and inappropriate daytime sweating. I asked him how many of these symptoms could possibly be part of this one illness. He paused and then said All of them’. I had waited for this diagnosis for nineteen months and I felt reassured until I asked what the treatment was. He said ‘There isn’t any specific treatment but I will refer you on to Clinical Psychology to see if something like Cognitive Behavioural Therapy might help’. I was in a daze. An illness without a cure? Referral for a psychological treatment? He must think this is all in my mind.

(Again, this reaction is common.)

I only just made it outside the hospital before the tears began to fall. I felt humiliated, worried, confused and, above all, just plain ill. I wanted to wake up and find it had all been a nightmare.

I was concerned that my work colleagues didn’t seem to understand how a previously energetic person had become a virtual cabbage and one by one they stopped contacting me. Presumably they didn’t know what to say to me. Only my true friends were left, but I didn’t have the energy to visit 119them or even talk to them on the phone for more than about ten minutes at a time.

While I was still waiting for my CBT assessment appointment I had a letter from my employers with the news I had been dreading. My job could only be held open for me for a total of one year. I felt desperate that I should get treated and get back to work.