When I was a child, living in Australia, I needed to have my tonsils removed. I was nine years old; I had been ill for quite some time and was very frightened at the idea of surgery. Everyone said to me that it would be fine and I would get lots of ice cream afterwards to cheer me up and make my throat feel better.

I had the operation. I was in hospital for four days and caught a cold because the nursing staff insisted on leaving a window open next to my bed. I felt terrible and my recovery was slow. And I never got any ice cream.

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We have just had our first bout of cold weather here in London. I have come to dread this time of year as I now have a tendency to become clinically hypothermic in a very short space of time.

I have been through a total of eight operations in my life so far. Five of these took place between 2004 and 2008. The second of those was in February 2005. I was admitted to hospital in London for the umpteenth time with acute, unexplained symptoms, on the day after the funeral of my closest friend. After a week of being unable to take in any food or liquid, I was very weak and in great pain. In desperation, my consultant (whom I knew well by this time) decided to open me up for the second time – and this wasn’t the last time he had to do this. He emphasised that I might not survive the surgery.

The operation turned out to be simpler than anticipated but I experienced severe surgical trauma because of my weakened state. My body temperature plummeted to around 31 degrees celsius (normal body temperature is around 36.8 degrees). My heart was doing some strange things too. I began to regain consciousness at this point and I remember shivering violently and uncontrollably for more than an hour while the nursing staff gradually brought my body temperature back to normal and my heart settled. My recovery from this operation was slow and tortuous. On the day of my operation, the partner of my dead friend checked into a hotel and killed himself. I had been powerless to comfort him in his grief.

A few weeks later, I tried a short walk outside for the first time. The weather was cold and I began to feel unwell quite quickly. When I got home, I checked my temperature as I thought I might be coming down with a post-operative infection. To my surprise, it wasn’t high: it was low – hypothermically so (ie. below 35 degrees) – although I had been outside for only a short time.

And so it has remained ever since. My personal thermostat was blown. I am mostly OK in temperate climates but even the generally moderate temperatures of a normal British winter are enough to cause me significant problems. If I am outside for more than a few minutes, my core body temperature drops very quickly. It can even happen inside, if the heating is inadequate.

I have discussed this problem with various doctors. No one can explain why it happens and actually no one is very interested, as I’m clearly still alive and apparently functioning “normally”. The fact that I have to manage this problem throughout the winter months by only staying outside for very limited periods of time – well, that’s just too bad. But each time it happens, a little more of my precious energy is sapped and my already restricted life with Myalgic Encephalomyelitis (ME) feels even more depleted.

If I stay out for too long, I begin to enter a catatonic state whereby I lose awareness of what is happening; at this point it can become dangerous. I then have to very deliberately monitor myself and everything that is happening around me and get myself back into a warmer environment as quickly as possible. No amount of extra clothing prevents this from happening.

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In October 2008, I was back in hospital for my eighth operation. This was a second attempt at correcting a cardiac arrhythmia, an earlier try having been unsuccessful. After the previous failure, I was paralysed with fear as the first experience had been truly awful and my recovery – such as it was – painfully slow. Yet again, I checked my will and the memorial service which I had prepared three years earlier. And again, my husband and I exchanged our words of farewell.

This time, however, I discussed my situation with the surgeon (whom I shall call “Tom”) and the anaesthetist. It was the same team as in the previous attempt so I already knew them. I explained to Tom about the hypothermia problem and queried the fact that operating theatres were always, in my experience, so cold. Tom confirmed that there was no clinical need for the temperature in the theatre to be kept so low and promised that he would ensure that a higher temperature was maintained throughout the procedure. I also requested that he would stay on afterwards, until I had come round in the recovery room (which is a lonely and terrifying place), so that he could tell me personally how it had gone. He agreed.

Somehow, I persuaded my legs to carry me into the theatre. About three and a half hours later I began to come round in recovery; Tom was there, waiting, as promised. I then did what I always do after an operation and promptly burst into tears, my standard response to surgical shock. I knew that Tom was emotionally reserved and not inclined towards displays of sentiment but I urgently needed reassurance. I held out my hand (because of the anaesthetic, I was still unable to speak at this point). He took it immediately and held it for a few minutes and told me that all had gone well. The comfort which I derived from this simple act of humanity was indescribable.

This operation was successful and I recovered rapidly. I later learned that, despite the fact that the theatre staff were roasting, Tom insisted that a warm temperature be maintained to reduce the risk of my becoming hypothermic again. He had kept his promise.

Since this last operation, I have been left with significant cardiac discomfort but the dangerous condition has been alleviated. I had hoped that perhaps my ME symptoms might also improve as a result but they have actually been exacerbated by the trauma. It had been impossible to evaluate those symptoms objectively in the preceding years because of all the other acute, ongoing problems. I had allowed myself to entertain the possibility that the ME (which I have lived with since 1981) might have improved; however, it was not to be. I now also live with the permanent legacy from so much surgery – including the hypothermia.

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After that final operation in 2008, I was out of the recovery room and back in my own room within a couple of hours. Sarah, the Australian nurse who was taking care of me, asked me if I was hungry.

And so, after forty-two years, I finally got my ice cream.