"The NHS will last as long as there are folk left with the faith to fight for it"
Aneurin Bevan

Wednesday, 4 January 2017

This Tiredness Is Exhausting

I wrote this title three years ago, but I didn't get any further than the first paragraph, for reasons that will become apparent as you read this blog.

For five years, from the beginning of 2010 to the end of 2014 I suffered from Chronic Fatigue. The fatigue was debilitating and, for someone who always made sure he was reliable, it made me thoroughly unreliable. I could not work because my fatigue meant I could rarely manage a full working day and often I had whole days when I could do no more than lie on my bed.

For the record, I have had type 1 diabetes for 40 years. I was also diagnosed with an underactive thyroid more than a decade ago and have been taking thyroxine. The diagnosis of my thyroid condition came about when I mentioned to my diabetic specialist that I was feeling depressed and when he talked me through the symptoms he told me that it sounded like an underactive thyroid and ordered the tests that confirmed it. (Ironically, I have been told by other people with thyroid problems that their GP had misdiagnosed them as depressed and only received the thyroid tests when the antidepressants didn't alleviate the symptoms.) Both diabetes and thyroid problems can cause fatigue, but the fatigue is different to what I experienced during my five years of CF.

As far as I remember the CF came on slowly, there was no trigger event after which I started to feel fatigued. However, I do remember events when I was far more tired than I should have been. For example on the 10th April 2010 there was a march in London to support public services. It was not a long march, it started at the park on the Embankment, along the embankment, went past the Houses of Parliament, along Whitehall and ended in Trafalgar Square. A short walk, but halfway round I had to sit down. I could not proceed until I had rested for 20 minutes. This was not me. I am the fidgety purposeful sort of person that does not rest until a task is completed. Yet here was I stopping halfway and resting. I don't do that, or at least, I didn't until then.

Misdiagnosis

The fatigue got worse and so eventually I went to my GP. The first suspicion was that I was not taking the right thyroxine dose. This involved changing the dose and having blood tests six weeks later to see the effect of the medicine. An overdose of thyroxine (T4) is not good for your heart so one of the tests is for a hormone - thyroid stimulating hormone (TSH). If your T4 levels are low, you produce TSH, so high levels of TSH show that you need more thyroxine. Conversely, low levels of TSH indicate that you may be taking too much thyroxine. (Such a feedback loop appeals to my physicist training: you raise or lower the thyroxine does until you achieve 'normal' levels of TSH and T4. The problem, of course, is determining what 'normal' is.)

In my case my values of T4 and TSH showed that the existing dose was right, but the GP I saw at that time clearly wanted to pursue it further and suggested that I may need triiodothyonine (T3) therapy. He told me that although the medicine could be prescribed by the NHS, the endocrine consultant at the hospital (who was my diabetes consultant) was not convinced about its use and so if I wanted to use it I would have to see another consultant. Since this was after the 2010 election, and we were in the new world of Lansley's NHS, the GP suggested I could see the other consultant privately. I was a patient too fatigued to work, and earn, so I did not have the money to spend money on healthcare that I thought was not necessary. This, however, was the new NHS. I decided not to see that GP again: he thought he knew more about endocrinology than the endocrine consultant and wanted to promote private healthcare over the NHS.

I tried another GP at the same practice. This time my diabetes was the barrier to diagnosis. The GP looked at my notes, saw that I had type 1 diabetes, looked at my HbA1c and told me: "Your blood sugar is a bit high, did you know that high blood sugar can make you tired? Try to get it lower." When I tried to explain that the blood sugar was not high (want to see high? try taking bovine insulin for ten years with only a urine chemistry set to monitor the treatment) he would not listen to me. When I tried to explain that my blood sugar was high because I was not taking exercise, so it was the fatigue that was making my blood sugar high. I was not fatigued because of the blood sugar, the fatigue was making my blood sugar high: he just dismissed the idea. Another GP I will not see again.

My HvA1C at that time was in the mid-50s. The NICE recommendation for a Type 1 diabetic is to have a value less than 48 mmol/mol. My diabetes consultant was not worried with the figure, and just gently encouraged me to try and get it lower. The GP, however, did not understand Type 1 diabetes and thought that a few points over the NICE level was 'clearly' a source for my fatigue. I have a letter when I was 22 that the diabetes consultant I was seeing then wrote to my GP. I was going through what the consultant called "a holiday from diabetes", (he told me that it often happens to young people). At 186cm my weight dropped to 64Kg (BMI 18.5). The blood tests (in modern units) were: my spot blood sugar was 30 mmol/l (it should be about 6) and my HbA1C was 180 mmol/mol (it should be less than 50). Was I tired then? No. I was buzzing. I was studying for a PhD in semiconductor physics, doing long hours in the lab and library and travelling a lot. Clearly when I was first diagnosed (at 11) with T1D I had a much higher HbA1c, because I certainly felt fatigue then.

So a GP refusing to listen to me because my HbA1C was a few points over the 48 recommended says a lot about his ignorance of diabetes and his disdain for patients. Neither of these GPs looked at my notes, and neither saw that (at that point) I had had Type 1 diabetes for 35 years and hence must have had a period of high blood sugar and the fatigue, and then asked me if the fatigue I was suffering was like that? No. As far as they were concerned, there was only one diabetes 'expert' in the room and it wasn't me.

Indeed, during a following appointment with the diabetes specialist I described the fatigue and he said my blood sugar - while not desirable - was not high enough to cause the fatigue. The GPs were blinded by my existing conditions. Over several months the diabetes specialist ordered various tests - adrenal, testosterone and even a sleep study - but none came up with a conclusive explanation for the fatigue. Finally he told me that he thought it was Chronic Fatigue Syndrome, and then he retired. The locum specialist was not particularly interested in the fatigue, and so I never really did have any help for the condition.

The Fatigue

It's easiest to describe the fatigue with a typical 'good' day. I would wake, as normal, at 8 not feeling particularly tired (I usually felt that I had benefitted from the sleep). I would do light work in the morning, mostly reading. By lunchtime I would start to feel physically tired and so in the afternoon I could not do any reading and - trying to make sure I kept active - I would do something in the garden, potter in the greenhouse, or do some weeding. By four the physical tiredness would get unbearable. I would have a headache and all my muscles ached, and I would barely be able to stay stood up. My brain would have slowed so much that any decision making was impossible. So I would take some ibuprofen and go to bed for a couple of hours. This happened every day, for five years.

During the time I had Chronic Fatigue I found that I was cold. I took to wearing tracksuit trousers in bed because I was so cold, and I wore two pairs of socks (one over the other) every day, even in the summer. I had extra blankets over the duvet. I was just so cold. Now I am recovered I am no longer cold and I wear just one pair of socks at a time!

I found that the main problem was not the physical tiredness, it was the mental tiredness. This was why it was so different to the fatigue from high blood sugar or lack of thyroxine. The CF slowed down my brain considerably. It got so bad that my wife said she was worried that I was developing dementia (in my 40s). I could not hold a conversation with my (sharp witted and intelligent) adult children, I was typically minutes behind the discourse.

Before the fatigue I was a technical book writer and speaker. Over a period of 10 years I had written 6 books each over 500 pages, 150 articles (I had two monthly columns) and spoke at four or five conferences a year. I went from writing 500 page books to struggling to write 500 words. When you write a book - even a technical book - you have to tell a story, so each chapter has to lead the reader through that story. Although I would have an outline to write to, the chapter would be in my head until I had committed it to the computer. I would know where I was coming from and where I was going, and have a rough idea how I was going to get there. While writing the 'journey' would change and I would make adjustments to how I would get to the final point.

In my job I would read many books, and I used to review technical books for publishers. If needed, I sometimes would speed read technical books, and I could read a 500 page book in a couple of days (I only did this occasionally - I found that I took in the book sufficiently well to be able to know the content of the book and where to find passages, but I really didn't get an understanding of the subject which I would have done if I read the book thoroughly).

With Chronic Fatigue I lost that ability entirely. If I wrote more than a few hundred words I would lose sight of the purpose of what I was writing. I have many abandoned articles on my hard disk where I clearly had an idea, but after working on it for a few hours I had lost the impetus and the inspiration and often I just forgot what the article was about. Reading was no better. I could not read for more than a hour at a time at best. If I was reading a complex subject I would often have to read sections several times. If the article involved several concepts I would be completely lost, I could barely hold one concept in my mind at any one time.

Managing The Fatigue

One of the main problems with Chronic Fatigue is that if you do any exertion - mental or physical - then it makes you overwhelmingly tired for days after. You cannot avoid those situations, so you have to learn how to manage them. I would avoid anything more than a half day meeting if I could. If the meeting was in the morning I would rest the day before and then when I got home after the meeting I would go to bed for the entire afternoon. If the meeting was in the afternoon, I would rest the morning before and then when I got home after the meeting I would go to bed. If the meeting was for an entire day then I would rest the day before but I would know that the day after I would be incapable of doing anything other than lie down.

You may think that the "treatment" for Chronic Fatigue is sleep, and so all I needed to do was to sleep more: go to bed earlier, wake up later. Unfortunately, it's not that easy. Going to bed earlier just results in sleepless hours, and if anything it makes you more tired. The reason why I would do some light physical exercise when I started to feel tired is that if I tried to sleep, I would not be able to. Although the Chronic Fatigue makes you feel tired, your body has other criteria it uses to determine if you can sleep. I spent many hours just staring at the bedroom ceiling, unable to listen to the radio (because I was too fatigued to follow the programme) but unable to sleep. I can tell you that the tiredness from Chronic Fatigue is exhausting. I learned that taking some exercise is important, it helps you sleep.

Rather than taking exercise (or working) until I was tired, as I do now, I had to do as much exercise (mental or physical) as I knew I could do and half a day's mental activity was my limit. This takes discipline but you soon learn that you have to do this because if you don't, you will pay with days of excessive fatigue. Conversely, you also know that you have to do something otherwise you cannot sleep when you need to.

Since I could not work I decided that I would volunteer the time when I was not tired to the local NHS. I was already an elected FT governor and I volunteered to be part of the local CCG's patient group. This involved meetings, maybe, half a day a week. Although I tried hard to be reliable, volunteering means that there is some leeway in your expected reliability. It also helped me because I had regular commitments. The temptation with Chronic Fatigue is to simply 'take to your bed' and hope the condition goes away one day. Although the regular meetings tired me out, they made sure that I did do something.

Going Forward

My Chronic Fatigue stopped fairly suddenly: one day I found that I did not need the afternoon nap. The first day that it happened it was a bit of a surprise, but when I found I didn't need the nap the next day, it was clear that something had changed. Over the following year I had a few 'relapses', which I think was me being careful and reacting to normal over exertion by immediately going to bed. I no longer get the 'post exercise malaise' the exhaustion that could last for days after doing some exertion more than you are used to.  I have not had the flu-like symptoms of headache and muscle ache since then.

Now when I go to my FT or CCG meetings I cycle the 10 mile round trip: as I explained to one of my colleagues, 'if you can do it, you should'. And I am writing a technical book, its quite a grueling schedule: 400 pages, ten chapters, one chapter every two weeks. It is such a brilliant feeling to be able to think again, to be able to exercise again.

And my HbA1c. Its still in the mid 50s, my diabetes consultant is still gently encouraging me to get it lower, but is not worried about the figure.

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