Zombie Life: The Good, the Bad and the Ugly

Part 2 of living with chronic fatigue

Hello friends,

This post got so derailed by the you-know-what, that over the course of writing it two carpets were laid, hair was cut, ears were pierced, trick and treating sweets were replaced by advent calendars in the shops, the roast ingredients of one soup were severely burned, at least six cups of tea were left to grow cold and my garage got broken into.

Anyway… as promised here’s the Good, the Bad and the Ugly of living with chronic fatigue. 

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Let’s start with the generally BAD stuff… as in the stuff that obviously sucks.

THE BAD:

Brain Fog

…is, quite frankly, the worst.

It’s forgetting how to make breakfast, your neighbour’s name, your own phone number, what day it is, why you’ve been staring into the fridge for the last five minutes (ah yes, I wanted to clean my teeth).

It’s trying to spell ‘cucumber’ with a ‘Q’, using words like ‘talken’ and having your friends laugh hard at you because your speech functions are suddenly closed for maintenance—thank you very much, please come back tomorrow—and, as they love to remind you, you’re supposed to be an English teacher.

It’s stabbing yourself with a fork trying to prepare a jacket potato because your hand-eye co-ordination (which has never been a strong point for me anyway) is broken. It’s being very, VERY careful preparing veg with a knife.

It’s taking three times as long to do basic tasks like changing the bed sheets because you keep screwing it up… which just shouldn’t be possible, really.

It’s also a massive waste of time, because, although you’d think that being signed off work for six months is a once-in-a-life time opportunity to work through your TBR pile, start drafting your next novel, or write regular Substack newsletters, the brain fog has reduced your attention span to that of a baby goldfish. So, no reading, no films, no podcasts, no following a conversation longer than ten minutes long, and definitely no writing.  

It is, essentially, being transformed from an ultra-efficient, achievement-driven, multitasking-whizz into an absolute, gormless idiot.

Which of course contributes hugely to…

Anxiety

One of the things chronic fatigue is really good at, is turning typically innocuous situations into anxiety-riddled obstacle courses.

Take shopping at the supermarket for example: a mission that requires a level of energy and focus you would NOT believe until you have to tackle it with CF in tow. The first time I ventured out to the supermarket on my own, after being comatosed weeks, I was jittery with anxiety. I genuinely didn’t know if I was going to make it. Was my brain going to abandon ship and leave me stranded, rudderless and confused, stupidly clutching my list in the middle of the pasta aisle? Or would my physical energy dry up before I made it to the till and I’d end up draped over the trolley as security wheeled me out?

As it was, I did manage to get myself through the checkout in one piece, but it required the same level of intense concentration that I usually reserve for chess, flat-pack furniture assembly and working out percentages.

The trouble with fatigue is that you’re on a timer every day for energy consumption. It’s a timer that doesn’t even give you specific numbers to work with: you have to guess how much time you have left as you wade through the day.

I’ve been up for three hours… do I have one more in me before I need to recharge with a nap? How long does that nap need to be? Two hours? If I nap now, I might salvage enough energy to get up and make dinner. Or maybe I should push through and cook dinner now in case I go for a nap and find I can’t get up again before tomorrow morning.

It’s a very intense exercise in risk assessment that never stops. No one else can make these decisions for you and you’re the only one who is going to bear the cost if you get it wrong. Understandably, living with a ticking time bomb in your head causes a lot of stress and anxiety. As does having to make so many decisions on an hour-by-hour basis.

On top of that, there are always external factors ready to ruin your carefully laid plans at any moment: a spontaneous lunchtime meeting, an unexpected cover lesson, a minor headache, an essential item being out of stock in the shop so you have to travel around to three other shops before you can get hold of it. Little nuisances that would normally get absorbed into the margin allowed for a naturally unpredictable life become problems that feed the anxiety until it’s turned you into a twitching mess who can’t even look at a clock face without breaking into a sweat.

Have you seen the film Hook? Do you remember the scene where Dustin Hoffman’s Captain Hook shows Jack his collection of clocks and lets him at them with a mallet? Totally relatable now.

But that’s not even the worst of it. There are even uglier things to deal with when your life is being ruined by chronic illness

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THE UGLY:

All the Crises

…physical, emotional, spiritual, psychological, existential… long-term illness really does a number on your sense of identity.

At first, you lose your social life and have to wrestle with the guilt and anxiety you feel for bailing on everything that made you a fun and interesting person. It’s amazing how quickly you disappear from people’s minds once you disappear from their view. This actually wasn’t too a big a deal for me because I’m about as introverted as an introvert can be and, if left to my own devices, even for a day, will devolve immediately into a happy little hermit, hunched up on the sofa, surrounded by family size bags of crisps, a pen gripped tightly in one fist, the remote control in the other, eyes bulging feverishly out beneath a hoody whilst I try to read, write and binge-watch anime simultaneously.

Happy days.

But then, of course, when brain fog wouldn’t let me hermit the way I wanted, there came the existential crisis.

I was once described by someone, behind my back by the way, as if it was a terrible secret, as Brains on Legs. Thanks, I guess? It makes me sound waaay smarter than I actually am, but at the same time also kind of creepy… like the fruit of some sort of Frankenstein-esque experiment. But it is true that I do love knowing things, and I love learning about subjects that interest me, and I also enjoy thinking about really deep, important things like: who can I recruit to be on my apocalypse survival team? Can I start a cat hotel without my landlord noticing? Is it possible to have a genetic aversion to people giving 110% to everything?

And then, of course, I have a writer’s brain too, so if I’m not actively writing I am at least always thinking about it: plotting, planning, drafting, trying out dialogue and the practical logistics of ideas.

Well, brain fog killed all of that DEAD. Initially, the quiet of a brain offline was quite nice. My biggest problem has always been getting my brain to shut up already—especially at four in the morning when my mind decides now is a good time to ponder the etymology of the word ‘gilet’—so it made for a peaceful change to have no thoughts at all for once. Zero. Zip. Zilch. Nada.

But then, after a few months, I started to freak out, because I couldn’t get my brain to do ANYTHING at all—not even the thinking about writing bit. Suddenly, I didn’t know who I was anymore. If I’m not Brains on Legs, then who am I? If I can’t even activate my imagination to keep myself occupied, how am I going to survive future waiting rooms, long train journeys and staff twilight meetings? What if I never write again? Never create a character, never plot a narrative, never draft a dramatic scene or witty dialogue exchange? WHO WOULD THAT PERSON EVEN BE?

Bring on the hyperventilating. I might have cried a bit too. It’s pretty terrifying when all the things you like and value about yourself, the things that have always defined who you are in your own eyes, let alone the eyes of others, disappear.

I can’t even bring myself to talk about the emotional and spiritual crises that coincided with all that personal drama. I’m still processing the trauma. I might come back to it in a year or two. Maybe.

Needless to say, I’m very happy that my brain has started to come back to life again. It’s still not quite there… it’s quite a bit slower than it used to be and there are times when it gets flummoxed by the simplest of tasks and crashes so I have to wait for it to de-bug before I can get back to using it again. But we’re getting there… even if it does mean it takes me more than a month to write one measly newsletter.

THE GOOD:

I’m not sure about the whole ‘what doesn’t kill you makes you stronger’ idea, but I do think that what doesn’t kill you is an opportunity to become a little wiser. And there are definitely a few things I’ve learnt so far from living with chronic fatigue.

Not giving a fudge

One of the things CF forces you to do is figure out what really matters. When you have a limited supply of energy to expend, you have to choose very carefully what to use it on, because EVERYTING requires energy: physical activity, thinking, watching T.V., eating, talking, feeling depressed, feeling excited. It’s amazing how quickly being bone-deep tired will change your attitude towards a range of things.

People pleasing? Self-pity? Don’t have the energy for that. Worrying about being misunderstood? Don’t have the time. Going to be severely judged as a depraved slob by visitors because the flat looks like a gang of toddlers have been squatting in it? Oh well. I’d shrug to show my indifference, but I don’t have the energy or time for that either.

Suddenly, very little matters beyond conserving as much energy as possible and getting better. There’s no room for anything else: not your own pride, dignity or reputation; and certainly not other people’s expectations, agendas or judgement.

Simplification

I was a very busy person before the fatigue decided to swallow up my life. A very happy, busy person. A very happy, busy person that I don’t want to be again. My diary was chocked full of events, appointments, meetings, socials and commitments. It’s not that I was doing anything I didn’t want to do—I genuinely enjoyed everything I was doing—but you know how they say that when you say ‘Yes!’ to one thing you’re saying ‘No!’ to another? Well, I was saying ‘Yes’ to so much that I was having to say things like ‘Not right now, maybe later’ or ‘I’ve only got an hour to spare’ or ‘Once I’ve finished this, I’ll come back to you’ to the things and people I really loved. Eventually, even if I hadn’t developed post-viral fatigue, I would have probably, eventually, burnt out.

So, I’ve decided that, going forward, I’m not going to fill up my time again like that. I’m going to keep it simple and give more time to the things that I love the most: like writing, drawing, learning Japanese and going for long, calorie-stuffed brunches with my favourite people.

Gratitude

Despite the catastrophic damage chronic fatigue has done to my ‘normal’ life, it’s actually not the end of the world. If there’s one thing I’ve learnt more than anything, it’s that there is life after the apocalypse. It might not be the life I’m used to or the one I would choose for myself, but it can still be a good and fulfilling life.

And there is always plenty to be grateful for:

I’m grateful for each small step of progress I make: for being able to think again, to smile, sing along to the radio and dance in the kitchen. I’m grateful I can teach my classes, begin to write again and read a chapter of a book without getting completely lost (though the other day I did try to turn a page by scrolling up it).

I’m grateful for every second of the day I get to spend out of bed.

I’m grateful for the understanding and support of my doctor, employer and colleagues.

I’m grateful to the friends and family who have been there for me: who’ve brought me meals and supplies, taken me out for a coffee or a walk (yes, just like a dog); who’ve prayed for me consistently and stayed in touch to find out how I’m getting on. For the people who’ve listen to me cry when I’m overwhelmed and frustrated, but who’ve also carried me through each day with good humour and positivity. 

I’m grateful for everyone who has done their best to understand and accept why my life has had to change so dramatically; and I’m grateful for the support and wisdom I’ve received from those who have been or are going through similar situations.

Most of all, I’m grateful that through it all God has never changed. Even when I’ve changed, when I haven’t been able to pick up my Bible, or go to church, pray or worship; when my commitment and faith has floundered, when I’ve been a terrible Christian, He hasn’t changed: He’s been the same loving, faithful and merciful God He’s always been. I’m grateful that, just as He has in every past challenge I’ve faced, He will guide me through this one too and that, ultimately, I have the hope of a fatigue-free life waiting for me, if not in this one, then in the next.

And I’m grateful that I am not alone, trying to figure this out, through the brain fog, on my own.

If you ever have any questions or want to chat, about anything, do get in touch using the comment button below.

Thank you so much for your patience; I’ll try not to leave it so long next time!

PJ