In 2008 I came back from a church camp in Matamata feeling pretty stressed & tired. Life seemed really busy, I had a lot on at work, my personal life was pretty busy & I felt I hadn’t had a rest in a really long time. At home on the Sunday night after the camp with my then girlfriend, I felt like I was on the verge of coming down with a heavy throat infection. I said to her “I feel like I’m about crash”. 2 weeks later my throat infection was diagnosed as glandular fever and 3 months later I was told by my doctor I had chronic fatigue.
Glandular fever laid me flat on my back for the whole of November 2008. At the start of the month the trees were bare and by the end of the month leaves had started appearing on branches. I used to wake up, have a shower, eat breakfast and then go back to sleep. By the end of November I had run out of annual leave and went back to work.
It was a hard slog. I started with half-days, then working 4 days a week and by the end of the year I was doing a full week. But I was a long way from my old self. I would be exhausted by 10am on a normal working day and concentrating at work used up available energy very quickly. I was finding myself unable to work to my normal ability. Watching the clock for 5pm was a new thing, not something I had done in the past but during that time something I started doing every day.
I was worried and went into the summer Christmas break thinking I just needed the extended rest of a couple of weeks off work and that after that I would turn the corner. It is this time I have better recollection of than the month of November itself. I remember Christmas/New Years 2008 as extended glandular fever: headaches, lethargy, exhaustion. It is the strangest thing to be sitting on the beach in the sun and just wanting to be in bed asleep. I drove my girlfriend & I back from where we had spent New Years and that 4-hour trip just destroyed me. I think I spent 3 days in bed after that. This was the begnning of trying to communicate the gravity of how unwell I was, but without nice labels like “chronic fatigue”. Your girlfriend wants to see you, but you know doing that will exhaust you for work the next day – what do you do? How do you explain it?
2009 was the start of a number of new things. I had blood tests so regularly the nurses would ask me the veins I last had blood taken from so we could use the ones that had been healing the longest. It turns out my right arm is my better arm, my veins stand out more & are easier to get to. Did I have adrenal fatigue? Thyroiditus? Grave’s disease? While I worked through this with my doctors I started going to a natural medicine place, pretty much out of desperation.
This was a strange time as my natural medicine guy was busy telling me mainstream doctors were always ignoring the benefits of natural medicine, and my doctors were very dubious of some of the natural medicine treatments I was getting. One involved my blood being taking out of my body, radiated and then put back in. Eventually I was cleared of any serious illnesses and diagnosed with chronic fatigue.
Chronic fatigue is a funny thing to have. You don’t look ill & it doesn’t sound very serious. Describing it also tricky, “I feel tired all the time” doesn’t cover it. The description I eventually settled on was “It’s like you’ve only got quarter of a tank of gas to last the day and even then you use up that gas quicker than normal”. You’re trying to get through a day on 25% energy so you measure it out, how will you use it? Will that meeting from 10am – 11am use 50% of it? Everything had an energy cost.
The reality of chronic fatigue for me was in 2009 I stopped everything but my job. A social life, church, sport, these things all had to stop. I had just enough energy to get through the day and then collapse when I got home. I was doing the job but I wasn’t getting the job done. I would spend the weekends very quietly, trying to store up energy to last the coming week. I remember evenings where I was so tired my head would ache and my pulse would pound so hard it would make my teeth clack together.
At one point I considered quitting my job and going on the sickness benefit. I was so unwell, I felt I was treading water & I was desperate to put myself in a position of more control over my rest & how I was using my energy. At the time my doctor was strongly against this – he said if I quit my job & essentially gave in I would take a lot longer to get well & might not properly recover at all. He was absolutely right in retrospect but at the time it felt like bad news. I thought “I feel this awful & this is the best option?”.
One of the key measurements we were using at the time was my “TSH” levels relating to my thyroid. Normal is between 0.4 – 4. In January 2009 my TSH was 0.02. By July this had improved to 0.93. I still felt like I was going one step forward, one step back, & about September 2009 my doctor decided to put me on antidepressants. I was initially appalled. Being told to go on antidepressants made me feel weak, like I had mentally been defeated by chronic fatigue. He explained that “chronic fatigue & depression overlap” and that I wasn’t being given antidepressants for depression. I still felt like a head case.
But, going on antidepressants was a major turning point. Within 2 weeks I felt like the mental fog of chronic fatigue lifted. I physically felt the effects of chronic fatigue still but my personality, my ability to think, these aspects came back in a major way. It was the first time since late 2008 that I felt “well” in any true sense and it was so exciting.
In late 2009 my doctor encouraged me to start exercising. I remember at the time laughing in his office at this suggestion. Walking for 10 minutes was exhausting, capable of bringing me to a dead stop. The idea of intentionally exercising was funny because of how incapable my body was of doing it. But I went for a few walks and got bored, so I went for my first run in a year. It was only 10 minutes long, I was dripping with sweat at the end of it and had to go home & have a nap but it was a big achievement. Not something I would have considered possible 6 months before then.
From there the exercise got stepped up more & more and I became more & more encouraged I was actually going to be able to get over the worst parts of chronic fatigue. While I was ending my days at work completely spent, I was looking forward to my runs after work as they seemed to have a positive effect. I might be tired before my run but afterwards I got a little pick-up. It all counted.
New Years 2009 was a milestone because the difference in my health to 12-months prior was like night & day. I went off the antidepressants in early 2010 and have stayed off them. I still have some symptoms that crop up on a daily basis. I was incredibly thirsty the whole of 2009 and I still drink a lot more water than I used to. When I get tired or stressed my hands can tremble. My ability to push hard and do big nights or big weeks at work has not returned to previous levels.
Over the time I was beating chronic fatigue I got a lot of advice. It seems everyone knows someone who has had glandular fever. My brother had it before me & got well in 3 months & never had chronic fatigue. So just because someone knows someone who had it does not mean their recovery rate will be true for you. My advice: get into fruit & vegetables, exercise regularly, drinks lots of water & get lots of rest. This is important for recovery & observing these habits will help also prevent relapsing.
My final thought is this: unless someone has had illness with chronic fatigue symptoms, or had chronic fatigue itself, they will have no idea how unwell you are. With fatigue you don’t have a shaved head or pull a drip around with you to help indicate to people how sick you are. Just deal with this. Focus on improving energy levels gradually. In my case this meant saying “No” a lot: no I can’t do that, no I will not do that favour for you. You will get better slowly.
Postscript
One thing I wanted to add was that in October 2009 I went to Fiji for 8 days. I wanted to say here that although my doctor did not advocate quitting work when the fatigue was really bad, that didn’t mean 8 days of pure rest wasn’t really good. If you’re familiar with the term, Fiji for me was a “step change” and I think there I made 3 months worth of recovery in 8 days. I slept well, I rested well and I ate well. Pretty much every day there I napped for an hour or two in the afternoon. I still remember Fiji really fondly because I got such a health lift.
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