Floored by fatigue

“I was so exhausted I had to lie down for 20 minutes after thinking about brushing my teeth.”

Chemo patients often have war stories about their battles with fatigue – played out in the style of the Four Yorkshiremen – and that’s my contribution.

The first round of chemo left me largely unscathed, but this past week the second round has hit me hard. The all-encompassing body-and-mind fatigue that has left me whiling away that hours in bed has been more debilitating than anything I have experienced before.

The complete lack of physical energy makes it difficult to perform even the most basic tasks, and the absence of mental energy makes creative thought difficult to achieve. Sleep provides little relief, but nothing else does either.

The numbing fatigue turns small achievements into major victories. After a quarter hour psyching myself up to empty the dishwasher, I rewarded this act of domestic heroism with a half-hour rest.

The medical advice to us chemo patients is to stay active, even when we feel crippled by fatigue. A few times last week I jumped on the walking machine on our veranda, only to find myself puffing within minutes and quietly cursing the experts and those who brought their advice to my attention.

My less-tired self sees the clear wisdom in the advice, but in the depths of fatigue it is hard to be appreciative, let alone to follow it.

One consequence of resting impassively for so long is that small aches and pains that would normally be ignored make a big impact on the mind. Twinges of muscles, sore joint and shallow breathing, all of which are standard fare for a chemo patient, become mental fixations that are hard to ignore. After a while I craved distractions to take my mind off the fatigue and everything else what was competing for my attention.

There are a few fun things to do when the heavy clouds set in. It's a great chance to watch some quality television I might otherwise miss - The Beautiful Lie has been my favourite in recent weeks - and to read things that flow easily - that'd be The Mandarin Code. And the gift of The 1000 Dot-to-Dot Book has proven therapeutic (adult colouring-in for blokes, I reckon). And there was a James Rizzi jigsaw puzzle along the way, although I was a spectator to my mother's puzzling through much of it.

Still, I better get used to it. The experts say the fatigue is an inevitable part of chemo treatment, and can persist long after the treatment itself has finished.

The process of dose adjustment means the chemo drugs will continue to intensify. Dose adjustment means incremental increases in the potency of the chemo drugs each round, accompanied by regular blood tests, until it’s clear we’ve reached the limit of what my body can take, and then continuing at that level, or a little less. That way I get the most potent chemotherapy my body can tolerate.

The idea makes a lot of sense, but in practice it means at some point in the chemo I will debilitated by fatigue, or nausea, or infection vulnerability – or at least the blood test results that indicate those things. The only way to avoid reaching that point is have the stamina to last eight incrementally increasing rounds without reaching my limit. It would be a remarkable feat, and right now I don’t feel too remarkable.

The past day I’ve had a bit more energy and have managed to go to hospital and work. Hopefully this indicates I’ve passed the worst of this round. But I have no doubt more exhaustion lies ahead.
Mother and son. After that I needed a good lie down.


Michael Barnett said…
What language did you curse me in? I believe Russian has a broad repertoire.
Ashlee said…
Ari, while the rest of your challenges are well beyond anything I've ever had to deal with, this is something I can really relate to-- I've been sick for the past 18 months with Chronic Fatigue Syndrome. People don't understand how debilitating fatigue is! Podcasts and audio books are good if you are too tired to keep eyes open, Netflix/Stan on a laptop in bed is great (movies are often too long for me to concentrate when tired, but TV eps are good). Even putting a chair in the bathroom so you can sit down while brushing teeth or sit in the shower when really exhausted...the little things can help. But I understand how frustrating it is. ME/CFS patients also often get told to do stuff even when exhausted and sick, and frankly it has only ever made things worse for me, so I'd say just listen to your own body. I try to break tasks up into little pieces when I am particularly unwell, and try to pace myself to avoid burning out.

I totally understand about the small aches and pains being magnified as well from being in bed for protracted periods. One thing that I tried (but have really not being disciplined about at all) is short mindfulness meditation activities. There's an app called 'Smiling Mind' which has some to try, the body scan one is particularly good for acknowledging those small niggles that are super annoying.

Also, silly little games on my phone and iPad like Candy Crush are a good way to distract myself when I'm really exhausted and not very happy about it.

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