In the last week or so I have been for a fifteen minute walk, been out (in a taxi and accompanied for moral support) to the hairdressers and been to visit friends for an about an hour. This may not seem like much, but for me at the moment, these were all major victories. Ten days ago, going on my own to the post box to post a letter to my friend, a five and half minute round trip, was a major achievement. Back in the dark times of early February, just getting out of bed, having a shower and getting dressed was a herculean effort.  This is because I am slowly, very slowly trying to wrestle my life back from the grips of fatigue. Right now, I know I must be getting better. The tell-tale signs are there: I am starting to get really quite bored; and the overwhelming urge to write has returned. But how did I get here? Now I am up to, it’s time to tell a story.

Living Life to the Full

I’ve always lead a fairly manic life. I love my work, and work hard. But also believe in living my life to the full outside of work. Most weekends Pete and I go away to the hills. We go caving, walking, more occasionally climbing or kayaking. We stay in caving huts, or camp out, trying to disconnect ourselves from the madness of modern life. Most people recover from work at the weekends, for us it can sometimes be the other way round.

Taking all my annual leave is also another important part of my philosophy. Typically I go on at least two caving expeditions a year, often Asia in the winter and the Alps or similar in the summer. Plus there are other shorter trips to the mountains or long weekend escapes. This means that the house is untidy, the hoovering doesn’t get done, nor the DIY, but who cares? No one ever said on their death bed that they should have cleaned the bathroom more frequently.

While I have always mixed intellectual pursuits and sporting activity, the intensity of my expeditions away probably stepped up a notch when I met Pete and he introduced me to caving in Asia. Here there were huge caverns waiting to be explored as well as exotic cultures to experience.  The need to maximise our adventures was also magnified when, in my thirties, four friends died. Three of cancer and one in an accident in the hills. None of them were much older than me. Four personal tragedies. Four lives cut unfairly and significantly short. Beyond the grief, this only reinforced the message that life is for the living; that we mustn’t waste a second since we don’t know how much time we’ve got.

A Winter of Discontent

The last few years have perhaps been even more full-on than usual. In 2015, as well as juggling work and adventures, my mum was diagnosed with a rare degenerative, progressive and ultimately terminal neurological condition. As a family we supported her decision to end her own life with dignity before the disease stripped this from her.  I would not be exaggerating to say it was one of the hardest years of my life.  In 2016, Pete and I both had surgery (me on my knee and him on his hip) and we also packed up and moved up north. 2017 brought further stress as Pete’s father became increasingly ill before passing away just a few days after we moved into our new house purchase in York.  Shortly afterwards I was due to contribute to an expedition in Spain. Pete insisted that I went, although it was a very tough time with distractions at home. Thankfully the later summer was easier and I could draw breath before what I knew would be a mad autumn.

In October I had two weeks in Melbourne on a visiting research fellowship, came back and went straight into teaching a new (to me) module, coupled with an outline Fellowship (grant application) deadline. At the weekends we went to Northern Ireland, South Wales and the Yorkshire Dales and did some excellent caving. The end of the module corresponded to what my mum would have called “end-of-term-itis”. Probably run down, I caught a bad virus at the start of December. I took three days off work to try and get over it, since I was about to go to Kenya to run a workshop.  I didn’t quite get better in time, and was on the brink on not travelling when I realised that if I didn’t go we would probably end up cancelling the event.  So I packed my bags and went, struggled through leading the workshop and then slept. Over the next few days the warmer climate helped and I felt a lot better.  However, the thirty degree temperature drop coming home was a shock and within a few days I was feeling rough again.

Pete and I were going away to France caving for a week over Christmas. At Manchester Airport I stocked up on paracetamol and decongestants. The first day of our holiday I felt a bit rough so we just did a short and easy trip. But two days later, following a more substantial underground outing I had a fever again and was laid up for a couple of days. We only managed one more decent trip on the holiday – on Christmas Day – and came home shortly afterwards. I knew I had underestimated the virus and recognised that I needed to take it easy to make sure I shook it off properly.

But despite taking it easy, staying at home and resting all weekend on multiple occasions, working from home as much as possible, I still relapsed twice. In the middle of January I was totally wiped out. The virus symptoms returned. They were relatively mild but the exhaustion was extreme. I spent the best part of the next week in bed, before starting to work again at home part time. I would rather have not, but I had got through to the next stage of that Fellowship application and I had to make the 23^rd January submission deadline. Meanwhile the doctor, who I had finally been to see, suggested that I had probably had three viruses, one after the other, likely including flu and it would take some time for my body to sort itself out. Maybe I wouldn’t be fully fit til Easter he suggested, but that I could keep working part time at home. Just try and keep taking things a bit easy he said.  So I cancelled some upcoming work travel and other meetings, but otherwise kept going, working part time at home. Almost three weeks after getting the flu, I felt quite a lot better and did two part days back in the office. But this was too much for me. I foolishly attempted a third, but felt faint, went home and back to bed. That was the start of February and I have been seriously unwell ever since.

Learning to Relax

My body was crying out for me to stop doing things.  It had been sending me signals for a while now, and although I had received them and even adjusted my behaviour, I had not done enough.  My body was now giving me no choice but to stop.  After two months of on and off illness it was clear that I now had post viral fatigue. This confirmation came less through the health service, and more via friends who had been afflicted this way before.  You see, most of my friends are all also serial over-doers and post viral fatigue is not something that happens to people who immediately take a week off work at the faintest hint of a cold.  It happens to people like me, whose life is built around just carrying on. To quote some experts in fatigue [1]:

“Many people who get [fatigue] describe having had highly active lifestyles before they became ill. They are often people who like to be ‘doing’ and find it difficult to switch off and relax. They also have a tendency to prioritise the needs of others. They spend their energy on helping other people. Usually they like to ‘get the job done’ and to complete work to a good standard.” 

Yup, that’s me. With the exception that I am very good at switching off from work.  It’s just that I switch off by my transferring all of my energy into other intensive activity, like endurance sports and expeditions. What’s often called “deep play”.

But now, I had no choice. I had to learn how to relax properly. There were no symptoms to my illness per se, just total exhaustion.  To begin with I would lie in bed for hours before getting the strength together to get up, go downstairs and lie on the sofa instead. Later in the afternoon I might have summoned enough energy to stand up long enough for a shower and getting dressed.

Losing Control and Asking for Help

The seriousness of my situation was brought home by an incident in the first week of February. The council were digging up the pavement in front of our house to replace the street lights.  Parking was suspended for the day, but because both Pete and I had forgotten about this, he ended up going to work without moving our car. In retrospect I should have just let it get a ticket. But, still in a little bit of denial, I moved the car round the corner just before the parking inspector came by. However, I was so exhausted from this short drive that I then felt that I didn’t have the strength to walk home. It was a hundred yards at the most, but I felt trapped and afraid. Realistically I knew I should just sit in the car, have a rest until I had more energy and then walk home. But because I was stressed out, I couldn’t relax and was therefore draining energy not accruing it. I rang Pete in a panic, who was on the verge of cancelling all his meetings to come and rescue me when I realised how ridiculous this was. I had friends much closer by than Pete’s work and just needed to get up the courage to ask for help.  I rang Guy, who came straight out and gave me the moral and physical support to get home, but it had been a lesson in two respects. First I had to really respect this illness, and second, that I needed to admit my situation and therefore not be afraid of asking for support.

That incident brought into sharp focus my lack of energy reserves. But it also substantially dented my confidence.  In the last twenty years or so, my greatest strength has probably been my inner resilience. On long caving trips, I always have the confidence that however tired I am, there is always a little more left in the tank.  Pushing myself and my endurance has been both a challenge and a pleasure.  And those physical achievements had also helped my professional confidence too. But now, I had lost all faith in my energy reserves. I no longer believed there was more in the tank, because quite frankly I had good evidence to suggest the tank was empty. It felt like part of myself had gone and this was probably one of the hardest parts of the illness.

Another challenge was feeling like I was losing control.  I hated being dependent. It wasn’t that Pete (and others) were not willing to help, but I didn’t like having to ask.  Without realising it I had clung on to one element of control in my reduced world by ordering grocery deliveries on-line.  But when the Beast from the East rolled in and deliveries were stopped, I had to ask for everything I wanted from the shops. I was surprised by how much it upset me having lost control of this small thing. It sounds like nothing, but was a stark demonstration of how important my own autonomy and independence is to me. I found myself thinking of my mum, a fiercely independent character, who had been unable to cope with the loss of control and dependency that her disease had caused her. Finally I had a glimpse of understanding of what it was like for her, an understanding that I had struggled with at the time.

Recharging the Battery

Slowly, week by week my energy levels improved. But the progress was glacial. It was three weeks before I was occasionally even the slightest bit bored, and six weeks before that symptom was regular. Every day I tried to go out, even if just for a minute or two.  It was a process of steadily working on my capabilities, physical and mental.  I would find that a good day, where I felt distinctly more energetic than the previous day, was usually followed by at least one day where I felt worse. When I had more energy I couldn’t help but use it. Even if just by sitting, rather than lying on the sofa, being more fidgety, moving around the house more. Then, in the following days, there would be a reaction to having used that energy. While in the bigger picture I was always making progress, these lows were really hard. While I was going forward, I would build positive images of the future in my head. When I took a step backwards, I would imagine that I might never recover.

When not in a low, I was confident that I would recover. My friends who had suffered with post viral fatigue had typically got better in four to six weeks.  But I had also been given the opinion that “most cases of fatigue sort themselves out in three to four months” [2] and really hoped it wouldn’t be that long. I also knew that there was the slim possibility of turning post viral into chronic fatigue and I desperately didn’t want to go there. It was important to try and keep positive and focus what energy I had on doing the right things to get better. This meant deliberate rest, total disconnection from work, and making sure my battery recharged before I made any attempts to deplete it.

I found that for someone doing “nothing” all day, I was surprisingly hungry. It seemed that I needed to eat regularly to keep my blood sugar steady since I had no reserves.  I also needed to carefully pace my activities, such as they were. Just in writing this piece I have had to restraint my “starter-finisher” mentality. Writing only a small piece each day, or every other day, rather than rushing out a first draft from start to finish as I would have done in the past.

How much is “too much”?

As I start to feel that the end of the illness could be insight, I wonder whether I might have done anything to prevent this situation.  Should, in future, I lead my life differently?  Many people have said to me in the past “I don’t know how you do it”. Maybe I can’t keep doing it?

I have reflected on this a lot. In retrospect it is easy to say that I should not have gone to Kenya and this was my mistake. But this is the sort of decision I have made many times in the past without ill effect. Remember, I have been living my life this ways for years and nothing so severe has ever happened.  Never more than the odd day or two off work for a bad cold.  But perhaps with family crises and an increase in work travel in recent years I have had too much going on after all. It’s hard to say. In my defence, I did ultimately recognise that I needed to rest after our Christmas “holiday” and I did reign things in. Or so I thought at the time. It was just quite how much I needed to rest that I did not and probably could not appreciate.

What was perhaps different this time was the severity of a number of viruses going round, and the flu hotspot in York. Certainly I have never known so many friends and colleagues be so ill, for so long, as this winter. And that initial virus at the start of December, was one of the worst I personally have had for a number of years.  I think the biggest take homes for me from the whole experience is that next winter I will (i) get the flu jab and (ii) take more time off everything if I do get ill.

But will I change my lifestyle? I am not so sure. I expect I will be more cautious to begin with, while the memory of this experience is still so fresh. But my underlying philosophy of getting the most out of life remains. It is part of who I am. And I am truly fed up of only watching the sun through the windows; I need to get out there. Just not today, or probably next week. But sometime soon. We are plotting our next three expeditions after all.

 

[1] Fighting Fatigue. Pemberton S & Berry C (Eds). 2009. Hammersmith Books. London.

[2] Pemberton S, pers comm. 2018.