2016... The Year That Partially Vanished

The slippery slope commenced at the start of winter 2015/16. My energy levels and general health took a steady dive and it would take the best part of two years to recover. In the space of a month I went from feeling close to peak fitness to struggling to cook meals for myself and largely being resigned to the sofa or bed.

The Onset

The first anomaly was acute exhaustion at my local climbing wall during mid-November. Usually finger strength was my limiting factor, not the hollow, wilting feeling consuming me in the upper half every route. I put it down a lack of recovery after a late finish on Skogshorn in Hemsedal the previous weekend. Back-to-back winter climbing weekends often left me feeling too depleted to train indoors during the week. This winter however I was determined to try and maintain one weekly visit in order to keep the finger strength ticking over until spring.

The following weekend I was back in Hemsedal, keen to find some early winter form. Barely halfway into the moderate approach to Øvredalen I found myself needing to rest and recover though, which was out of character. By the time we were beneath our route my tank was close to empty. I could barely look at the route, let alone climb it. The deep snow hadn't helped but usually that was merely a hindrance. I lay in the snow for while, puzzled by my flat condition, before summoning up the energy to return down the valley. At least gravity was on my side now.

Next day, after an early night and some considerable carbohydrate loading, we tried the same route again. I still felt run down but knew a broken trail and ample sleep were now in my favour. It was better to make the most of the fine weather and get myself outside, and then see how things went I figured. I paced myself gently on the approach and to my surprise my reserves felt improved enough to reach the climb in a better state, attempt the climb, and also enjoy it. In fact all concerns of tiredness slipped to the back of my mind once I was immersed in the climbing.

Me climbing the start of the first pitch of Øvredalsrenna
(Photo by Anna Kennedy)

Despite my dip in energy I made best efforts to stick to a training regime at my local climbing wall the following week, but suffered similar symptoms of exhaustion to last time. The following weekend I scaled back ambitions to just a day's drytooling close to home. Fortunately the routes were short as each effort would lead to an onset of fairly intense light-headedness. I felt strong at least but the signs were clear that my body needed complete rest until suitably recovered.

By December the fatigue was starting to affect all aspects of my life beyond climbing. One morning whilst walking to work I had a similar moment of light-headedness, as though I might suddenly faint, and just five minutes from my desk I decided to turn around and catch a bus home. A subsequent similar experience at work hastened a visit to A&E for fear of black out. A couple of hours spent in the waiting room levelled my head enough for me to leave before my name was called though.

I felt generally run down and unable to recuperate. What's more I had the early signs of a cold that neither developed or subsided. A colleague complained of similar nagging cold symptoms and so I thought this was just 'something going around'. I would turn up to work, largely sit at my desk and manage the bare minimum, then leave at first opportunity. A backlog of work began to build up but I was too tired to address it. At times I struggled to find the energy just to leave my desk and go home. Often an hour would slip by with little event until I finally did so.

Two weeks after the day's drytooling I felt suitably recovered enough to climb at Gausta above Rjukan. The ice routes were only about thirty metres but the approach was a gentle uphill drag that normally took around forty-five minutes. By midway into approach the familiar symptoms re-emerged. Belaying Anna on the first route allowed for some recovery though, and I managed to follow her without too much trouble. Reserves began to decline during my lead attempt however, and I found myself unable to commit to a couple of metres of steep ice that normally I would have danced up. Unknown to me at the time my energy levels were still on the downward curve.

Close to my high point on my only lead of the day at Gausta
(Photo by Anna Kennedy)

Further Down the Spiral

Two days after Gausta heavy flu symptoms finally took effect. It lasted for four days, after which I never properly recovered. I went from feeling generally run down to largely being horizontal and struggling to look after myself.

I hardly got out of bed over the Christmas and New Year period. Anna and I had originally planned to do some Scottish winter climbing but this was demoted to Peak District grit. In reality I spent most of my time in a hotel bed in Buxton - and not in the romantic sense. 

Back to work (in presence only)

Work felt far beyond my capabilities after New Year but I initially agreed to try 50% of my normal working hours at the request of my fastlege (GP). I barely had the energy to cook a meal for myself and so my attempt to work quickly proved futile, irrespective of what percentage of my normal working hours I attempted. I experimented with working very limited hours as the months progressed but ultimately I didn't really have the energy to contribute anything significant beyond my general presence.

You Look Perfectly Normal To Me

Sleeping had become my main activity and the rest of winter was largely seen from my lounge window. Anna had become my unofficial butler, PA, and chauffeur and looked after most things that needed looking after thankfully. Ironically I had felt stronger and fitter than I had done for years throughout the autumn immediately prior.

Fatigue was the main issue. Often I would feel 'tired but wired', as though the body was physically exhausted, yet the brain was unable to wind down to fall asleep. It was more than just a physical activities that hastened the decline. Many tasks requiring concentration such as driving, using machines at work, or looking at computer screens would quickly bring on a sort of disorientating headache, very similar to what I've experienced from moderate altitude sickness in fact, only minus the nausea. Even flicker from lights was a problem in this respect. For example I would need to close my eyes as a passenger whilst driving through tunnels due to the spaced ceiling lighting creating a light strobe effect. I couldn't concentrate enough to speak Norwegian and even extended conversations in English felt exhausting at times, particularly evenings. Wired feelings would develop into headaches, brain fog, light-headedness, even heavier breathing, and ultimately poor sleep. The following day I would 'crash', and I would wake up feeling exhausted. A downward spiral would commence and continue for typically two to three nights before things stabilised, after which it would take anything up to a couple of weeks of gradual recovery. The delayed crash meant it was hard to pinpoint in the early days what was actually contributing to me crashing. I was wired to some extent nearly all the time, and crashing at regular intervals, which made the dips in energy less apparent. As time progressed better general recovery made the crashes more obvious, which helped identify the triggers. I continued to drive for example for a number of months before realising driving was one of the significant contributors.

My sleep was particularly erratic. Some nights I slept for twelve hours, some nights I lay awake most of the night with insomnia. Sleep would be broken and light. Rarely would I feel fresh in the morning. Often I would feel acutely tired at bedtime, only to find myself awake from the middle of the night onwards. My brain was functioning like an old battery that didn't recharge properly. I'd often be reliant on pain killers to manage headaches in the night, experience hot flushes, and sometimes I'd even develop pins and needles in the extremities, which made finding a comfortable sleeping position all the more difficult.

Ironically I looked perfectly normal most of the time, apart from occasional comment that I looked sleepy after a particularly poor night's sleep.

Diagnosis?

My blood had been tested for everything under the sun at my doctor's surgery but everything had come back negative. The only abnormality being a slightly decreased platelet count. I had a chest x-ray and an MRI of my head. Things were definitely checked thoroughly at the onset. 

I was referred to the general medicine department at my local hospital where similar blood tests also came back negative. They concluded that my symptoms resembled some type post-viral fatigue and said there was a prognosis of a reasonably quick recovery. No virus was actually detected in blood tests, however the flu symptoms that I experienced in December were thought to be root cause. Whilst this sounded feasible maybe I should have reemphasised that the first mild symptoms of physical fatigue commenced a good month prior to flu, at which point no other symptoms were present. Apart from the period of flu the onset of symptoms had progressed at a very slow rate initially. 

I had a couple of follow-ups but the focus was always on reviewing any recovery rather than providing any support to help with recovery. After a couple of follow-ups, during which there were no improvements or declines to report, I was discharged. Looking back I regret not asking the question 'what if I don't improve in the way that you predict?'.

Self Help Begins

With current avenues hitting dead ends I set about researching how I could personally make changes for the better. Alternative therapies or nutritional remedies with poor supported evidence are not my thing, and as a healthcare professional searching journal databases for peer-reviewed literature was fortunately second nature. I found some good review articles regarding management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, or ME/CFS for short, which seemed relevant to my situation. I knew little about this condition prior to illness but the criteria for diagnosis, by whatever consensus, appeared to match my symptoms exactly. NICE state that symptoms need to be present for four months but some literature stated six months, and at this point I was still a month or two shy of this figure. ME/CFS has no 'cure', and management techniques are largely self-help orientated and practical to adopt. The literature also gave me realistic expectations, lessened the worries, and helped me to keep a positive frame of mind, all of which helped matters. Whether I actually had ME/CFS was less important to me than if the management strategies could help my situation.

My key strategy was to be as active as possible whilst staying within my energy envelope. Exceeding this would cause me to crash (or relapse), as previously described. The key was steady recovery rather than cycles of relapse-recovery. To begin with I couldn't do much, other than be more active around the house, but by April (five months after onset) I was managing a fifteen minute walk around my local neighbourhood. 

Improving sleep was another key focus. This meant virtually no caffeine or alcohol. There was no TV after 9pm, and at least half an hour before bedtime spent reading. An eye mask and ear plugs were worn to minimise disturbances during the night and our east facing bedroom window was decked in tinfoil to further reduce the sunlight in the morning. There was also to be no napping during the day. In some respects it was like being a small child again. I tried to stick to a regimented wake-up time as best possible, but the priority needed to ultimately be focused on getting enough sleep during erratic spells to avoid crashing. I kept a daily record of fatigue levels, sleep, other symptoms, and activity with the hope that it would help me see the patterns of relapse more clearly. Despite best efforts it proved of limited use as I found the varying presentation of the fatigue that I was experiencing too difficult to quantify. Measuring true physical fatigue compared to wired fatigue was particularly hard to score. 

The hardest part of 2016 was how isolating this sort of fatigue was. As well as largely giving up work I could no longer socialise in the evenings as I would quickly feel wired, which subsequently sent me physically on a downward spiral in the following days. As I improved the crashes have become milder and the recoveries faster, which allowed me to steadily return to a normal schedule. Not knowing to what degree I would recover naturally weighed on my mind. Was my career effectively over for example? All I could do was remain positive and focus on gradual improvement in the short-term.

Back to Climbing

By late April I felt ready to try some gentle outdoor climbing. Ironically this was a couple of months before I felt confident to walk any moderate distance beyond my immediate local streets. With walking it was difficult to anticipate the onset of fatigue, and rapid decline would often present without warning. I would then be faced with the problem of needing to get home on a flat battery from wherever I had walked to, which left me in an even worse state. Climbing offered the luxury of never being far from the car with sensible crag selection. If I started to feel tired then it was easy for me to stop. I think some people picture climbing as being a very intense activity, maybe partly because of indoor climbing, but for a lot of people, on moderately graded/angled rock, it can be very calming and peaceful. Particularly trad climbing, where the pace is often slower. Belaying also offered suitable downtime in between climbing.
Moderate exercise, provided it stayed within my energy envelope, was undoubtedly the most positive aspect of my recovery. It had the opposite effect to the triggers that made me feel wired and also improved sleep.

Me climbing Vakre skyer (n5-) at Kolsås Nedre Sydstup upon my return to climbing. I actually fell off this on first attempt due to a foot hold breaking.

I tried an indoor climbing session in May but, in contrast, the heat and intensity were too great, even on easy stuff. Once again there was the light-headedness that increased with height. It was quite clear that low intensity exercise for long duration was what my body best tolerated.

The Long Road

Despite best efforts I had a couple of major relapses during June and August that lasted for a fortnight on each occasion. During these periods I once again became closely acquainted with the sofa. Both occasions were actually from work-related activities. Despite me massively reducing my working hours and responsibilities I still found myself doing too much at times - entirely through my own desire to try to do more. Relapsing regardless of best efforts is pretty common though, based on what I've read, as it is easy to overstep the mark without realising due to the delayed onset of symptoms. 

Our landlord serving us notice for the beginning of the summer didn't help matters but, thanks largely to Anna, the move went smoothly and our new place was actually a more relaxing environment.

By the middle of summer 2016 it had become fairly evident that this was not the short term virus originally predicted by my local hospital. The physical aspects were improving but the mental elements, such as concentration, headaches, dizziness, and insomnia, were more static. Relatively speaking, they were now becoming the primary symptoms. It was hard measure how my tactics to expand my energy envelope with physical exercise were affecting mental elements in the long term, although the moderate exercise and outdoors certainly improved symptoms in the short term. The mental aspects were not something that responded positively to any form of 'training' in the same way as the physical aspects and any attempt to acutely push my mental capacity simply made me feel worse. There also didn't seem to be any evidence for this and my own thoughts were that I should be looking after my brain as best possible, not doing activities that induced headaches etc. The best that I could do was to stay positive and observe good sleeping habits and lifestyle.

 

Late August marked a definite milestone. Whilst out for a short walk with Anna on the edge of Nordmarka my energy levels faded, but a short rest and some food intake soon revived me. In that moment it dawned on me the importance of diet to maintain energy levels during activity. I had read about the benefit of small meals throughout the day for managing chronic fatigue but my ingrained belief in three proper meals had dissuaded me from changing my ways. In a short space of time my walking distances increased, purely through regular food intake in small quantities. Sticking to the big trails initially helped as well due to the lower level of concentration needed to monitor what lay underfoot. The smaller trails around Oslo are littered my overground tree roots due to the shallow soil depth, which meant I needed to constantly pay attention to where I was stepping. The following autumn would be spent exploring every accessible trail in Nordmarka as a consequence.

September was another step towards normality when I spent three weeks climbing on Lofoten. We climbed most days and, apart from a wrist injury, I felt largely 'normal'. The moderate exercise, outdoors, and camping all had a positive effect. I actually slept better in a tent in fact due to our apartment often feeling a touch too warm during the nights.

On top of Solsværgeita, Lofoten

I used a damp autumn to gradually increase my walking distances. Everyday I would try to walk at least an hour, some days I managed as much as 20km. With the kilometres being clocked up throughout autumn it seemed only right that my first winter route of the 2016/17 season was on Skurvefjell, close to Øvredalen where the whole downward spiral had begun twelve months earlier. In some respects I had my best winter. I didn't climb quite as hard as two winters previous, however my technique and conditioning had certainly improved, largely due to a lot of brittle, dinner-plating ice that demanded good technique. When the time arose to put in some harder leads towards the back end of the season I managed some of my hardest.

The summit of Kobberhaug in Nordmarka during November 2016

Me leading the first pitch of Storsvulen, near Ål ski centre
(Photo by Anna Kennedy)

Frustration

With the uncertainties surrounding the mental aspects I asked my fastlege to refer me to a dedicated fatigue outpatient clinic at Aker Hospital in Oslo. Unfortunately the referral was rejected as it needed to come a medical consultant, and the only one that I had seen had discharged me. Rather than refer me back to the original consultant my fastlege deemed it easier/better to refer me directly to a rehabilitation centre near Lillehammer that specialised in fatigue, where typically I would be admitted for a month. I waited for funding to be approved by the Norwegian health system (NAV), after which the centre rang me to say there was a seven month waiting list, which by this point would be an admission during June 2017. It hardly seemed worth it, given the steady physical progress that I was making through my own personal efforts. To put things in perspective I was already walking 10-20km a day by this point, so any sort of physical program seemed as though it would be wasted on me. I would feel like a fraud. The long admission felt also disproportionate to my requirements, given I had yet to even speak to a specialist, which was primarily what I had hoped for in the first place. Given the efforts that I had been making independently it also felt a step backwards to enter such an institutionalised environment. I'm sure these centres are great for many people, particularly those who lack a relaxing home environment or good sleeping arrangement. In my case that wasn't an issue and it was disappointing that simple needs could not be met, which was simply to speak with a specialist in order to confirm that I was doing everything possible. 

Close to one year after onset I was sent for a psychological assessment by my fastlege, which essentially involved a series of puzzles and memory tests to assess cognition. Due to my concentration and attention dipping so soon after commencing the tests an extra couple of appointments were needed in order for me to complete what should have taken one visit. Thus ironically the effect of fatigue was removed from the outcomes, and so I never even bothered to ask my fastlege about the results.

From a recognition point of view things became increasingly frustrating. My fastlege was good at listening but it became increasingly apparent that her primary concern was to increase my working hours rather than focusing on the things I needed to do to get better. With hindsight the priorities seemed back-to-front.

I hadn't seen a specialist beyond the acute stage, and therefore had no proper diagnosis to explain the longevity of illness. I don't think a diagnosis would have affected my recovery, given my positive approach and proactivity to help myself, but some genuine recognition from the state's institutions would certainly have given me a little credibility and relieved some stress about future finances. Ultimately, with no proper diagnosis to explain the symptoms and their longevity, I found myself with no income from the start of 2016 that lasted for eight months as a consequence of not being able to prove to bureaucrats who had never met me why I wasn't able and ready to return to work. One department of NAV was willing to admit me to a private rehabilitation centre for one month for likely a small fortune whilst the neighbouring department rejected all financial help on the grounds that I was fine. Luckily we were able to jointly live off just Anna's income for this period so that I was able to return to work when the body felt ready. I had already demonstrated that returning to work too soon would be counterproductive, and a failure to accept the situation. 

Thankfully I have an employer that supported my decision and showed patience. Were I still in my previous UK job then I'm not sure how I would have managed. My sick pay was just ten days, which would have been a drop in the ocean, and the cost of living in London would have quickly wiped out my meagre savings. No doubt I would have returned to work prematurely, or have needed to move back in with my parents. I can see how many people fall into a cycle of relapse in order to maintain an income. 

In hindsight I think I should also have given up work much sooner. I reduced my hours but often found myself treading water. The weekly schedule partly revolved around mildly crashing during working days and then recovering on non-working days. This was no fault of my employer though who was incredibly patient and flexible. Ultimately the mental aspects didn't clear up enough to begin to return to work until September 2017.

In light of NAV's decision to refuse me financial support I took it upon myself to see a private consultant in early 2017, who duly diagnosed me with mild ME/CFS. Ultimately it didn't change much as now the bureaucrats were nitpicking about inconsistencies between my original lack of proper diagnosis at my local hospital and this one. A Catch 22. I could have argued my point indefinitely with NAV but whole process was incredibly protracted, poorly structured, and illogical, and it felt better just to show two fingers, move on, and concentrate on getting better. I don't see how anybody could argue that this shouldn't have been diagnosed as ME/CFS, since the standard procedure for diagnosing ME/CFS is excluding everything else, which was duly been done in the early stages by both my fastlege and local hospital. By failing to diagnose me they had ironically effectively diagnosed me with ME/CFS.

The whole experience with state institutions was fairly unpleasant. There seemed some very old fashioned views, rather like there used to be in relation to depression or eating disorders. Maybe some people think I was faking it, and all I can really offer in response is sincerity. Some people probably thought that 'recovery' should involve doing as little as humanly possible. No doubt if I had adopted this approach other people would have felt that I should be trying to be more active. To be fair, I always assumed 'fatigue' to merely be a sort of physical tiredness. It's partly why I wanted to write this in small hope of improving awareness, although it must be stressed that I was at the milder end of the spectrum.

Recovery

Maybe during the early stages I didn't listen to my body enough. I tried to climb at weekends and train in the week despite my rundown state. Before the fatigue I had always had deep reserves, and so naturally made judgements based on how I expected my body to typically respond. Only when retrospectively looking at my training diary did my activities during the early stages seem excessive compared to my physical state. At the time they felt perfectly normal and almost a habit.

Overall it's difficult to know how my actions affected recovery, given there's only one of me. Particularly given the actual cause of fatigue was unknown. Maybe I would have recovered a similar steady rate regardless, or maybe I wouldn't. I expect I will never know. I'm very glad though for such a positive outcome in the long term that has given every opportunity to make full use of my life.

Recovery took the best part of two years but thankfully I'm virtually back to normal now. The mental aspects are still there to a tiny degree but I can manage them with a few changes in lifestyle. I still can't drive any significant distance, and I need to mildly regulate the amount I look at a computer screen, but I'm able to do spend my evenings doing normal things, rather than simply 'winding down'. Not driving is probably most limiting aspect with regards climbing though, and I feel as though I've lost a degree of independence.

Physically I'm back to top form, provided I manage the above aspects properly. In fact I climbed some of my hardest ice and rock routes in 2017. There's even been some benefits to all this in that the big focus on regular exercise and endurance put my in the leanest condition that I've been in fifteen years. I needed to buy a smaller harness in fact. It's difficult to say whether I will get back to literally 100% in all respects but I'm at a point where life is normal, which obviously an amazing outcome given the uncertainties in the early days.