I am not lazy, merely fatigued - Will's story

Perhaps the best thing to come out of my MS diagnosis was the realisation that I wasn't lazy, but merely fatigued.

Will Berard is a stand-up comedian and lives with MS. In this blog, he tells us about how MS fatigue snuck up on him unknowingly and how hard it is to deal with, particularly when you don't always understand how fatigue manifests. 

I remember an exchange, a couple of years prior to my diagnosis, with a friend who had recently been through a bout of post-viral fatigue. She was signed off for a while, and was telling me that, even after she was back at work, she wouldn't have the energy to do anything in the evenings beyond cook dinner, watch some TV, and go to bed. When I mentioned those were very much my week nights, she told me this wasn't normal.

So I had been experiencing fatigue prior to my diagnosis, but never construed it as such. I rarely went out, but that was because I was more of a quiet-night-in type. I did household chores in the morning rather than in the evening, in fact, I woke up early to do things before work rather than after, but that was just because I was a morning person. I took lunchtime naps, but that's just because... well, who wouldn't? Like the proverbial slow-boiled frog, I didn't notice the fatigue creeping up on me, nor did I notice that I was already putting in place strategies to mitigate it. That was just how I lived, and it still is. I doubt I am alone in this case.

My view is that fatigue is the most invisible of invisible disabilities, in that it can be invisible to the fatigued individual themselves - the fatigué, if you will. A lot of the management of MS boils down to listening to your body, a piece of advice that sounds inane, because it glosses over the difficulty of recognising what your body is indeed saying. So it's not so much listening as it is understanding your body, knowing its language.

Fatigue doesn't necessarily manifest as tiredness, subjectively. In the same way that a low blood sugar level doesn't always feel like hunger, or dehydration like thirst. Many a time have I thought I was hungry when I was merely bored. Once, I even thought I was in love, but it turned out to be a bit of gas. In my case, fatigue sometimes shows up as despondency, a pervasive sense of dull dread. It is hard to untangle depression, anxiety, and fatigue in MS - they're all in each other's pockets. It's only when I noticed a pattern of dip in mood in the afternoon of days where I'd gone to the gym or the pool in the morning that I connected the dots.

Like the proverbial slow-boiled frog, I didn't notice the fatigue creeping up on me, nor did I notice that I was already putting in place strategies to mitigate it. That was just how I lived, and it still is. I doubt I am alone in this case.

Churchill likened his depression to a black dog, this is a black sloth. Conversely, in the evening, as the day wears me out, Lady F shows up more as a shortening of my temper, a loss of patience. Imagine a five year old getting tired: they won't be asking for their bed, but instead you'll get an explosive cocktail of sulkiness, petulance, and anger. It is important to identify those moods and feelings as a manifestation of fatigue. First, because it gives a necessary distance from them: listening to your body, but not taking what it says at face value. Also because they act as an early warning system: If a stitch in time saves nine, it stands to reason that a 20 minutes nap in time saves a three hours collapse further down the line. Although it's more of a mouthful to rhyme.

Of course, none of this is specific to pathological fatigue, let alone fatigue in MS (though the interconnection of mood and energy is perhaps more salient in MS, on account of MS bringing its own mood issues to the table). It's all round good advice, really; it just happens that people with MS suffering from fatigue cannot afford to ignore it.

The analogy of the sloth, or that of the toddler, are helpful in that they help to conceive of fatigue as an autonomous entity, one with specific needs, demands, but without a clear way to articulate those needs. Hence reaching for animals or small children.

And, in dealing with those, listening is not enough. It is also necessary to decode what is being heard into something meaningful, and, ideally, actionable. Starting by simply knowing what to listen for.

Sadly, there is no turnkey way of listing this information, as everyone is different. This is why everyone is banging on about fatigue journalling like they've got shares in a stationery franchise. It's not about building a log of how you felt hour by hour, for archive purposes. It's about having a way of identifying patterns, times of peaks and troughs, the effect of meals, exercise, cognitive activity, mood, and so on.

I hope to be blogging more about this in the near future, fatigue permitting. In the meantime, I have a sloth to groom.