How children's books kept me going

Or how long covid broke me...

Inside I was shaking.

This is a long one.

I have always tried to squeeze every last second out of a day. Even as a kid, I would be drawing, kicking a ball, building Lego, making cardboard things (back in the day every box that came through the house was prized like it was a rare resource), you name it I was doing it, and often while watching TV. I hated the day ending and still do – you ask my wife Katie.

It is this personality trait that apparently made me a perfect fit for the joy that is post viral fatigue, chronic fatigue, Long Covid, whatever you want to call it. I’m much better than I was, but writing about it is difficult, mainly because I’ve found that the more I talk about it, the less I forget about it – and forgetting about it is key. More on that later.

Any way, three years on, I can look back a little. I do realise that one of the key parts of getting better was working on my books. Drawing and writing gave a me a focus, a link to the old me, and that’s why I’m putting this all down now. It’s been an amazing weekend, seeing people get behind my Kickstarter campaign. In those darker days, when just chopping vegetables would wear me out I feared I’d never get back to being someone who could do new things – someone who could do anything other than just exist. The Kickstarter feels like a real return to being me.

Now then, if you’ve not experienced it or know friends who have dealt with post viral fatigue, Long Covid can be a lot of different things, but its main defining characteristic is tiredness. Now this is not a normal tiredness; it’s not the feeling of having been down the gym, played a game of football or spent a day walking hills, it’s the feeling of being physically weighed down (if you’ve ever slept under a weighted blanket, it’s a lot like that,) and desperate to close your eyes.

I had other symptoms. Linked to the overwhelming tiredness, my eyes burned as though I’d been up all night, particularly just after waking up. (I should add that they still do actually, although I’ve learned to live with it.) I can deal with tiredness, after all I do have two children and I have done a week of school events in China with hideous jet lag. What I couldn’t deal with, however, was the shakes.

For some reason, my nervous system was shot to pieces. I couldn’t get excited about anything for fear of my kicking off like I’d just drunk ten espressos and been hit with huge anxiety. Any situation where element of stress was involved would set me off. I couldn’t go into busy environments, I couldn’t ask a question in a shop, take a train or anything without feeling so shaky inside that I wanted to run away and hide in a dark room.

The picture of me at the top was taken about three or four months after I caught covid, when I was just coming to terms with no longer being physical and sleeping lots, but still trying to do the things I always did. I was shaking terribly in this this photo, and trying really hard not to show it. I give my all at events, and they always have been exciting if tiring – I mean being on a stage is never not going to get the nerves jangling – but this was difficult. It was difficult because I wasn’t equating the feelings to normal nerves. This was something else, and that really weighs on your mind.

I’d done some World Book Day events a few weeks earlier which had really pushed me to the limit, and looking back probably made things worse. (I’d slept in the car at lunch breaks, battled through the feeling of crushing anxiety and stress while talking to teachers and children, and somehow managed to drive home at the end of the day.)

I decided to stop doing book events until I knew I could cope.

At this point, I started finding ways of coping a little. My friend suggested meditation, Wim Hoff’s breathing technique (basically a form of yogic breathing) and even cold showers. I’d actually done some breath work before, many years ago at yoga class, but I wasn’t capable of joining the dots to understand the effect it had on my body. Turns out, it was exactly the effect I needed. I learned that if my nerves were screaming, the best way to counter them was a cold shower. It totally reset me, and although the effect didn’t last long that, coupled with the calming effect of the breathing exercise and meditation, showed me that I could control my nerves.

I remember vividly having family around, chatting, playing music, feeling desperately uncomfortable so I took myself off to have a cold shower so that I could return. It was weird, but most importantly I suddenly had some sort of mechanism for coping. If stress was my enemy, cold water was my friend! It basically told my body to get a grip.

This is how I felt most days, especially when hanging out with my lovely daughters.

The timeline gets a bit blurry here. I was working on my Big Sky Mountain books, drawing the illustrations, which was my one little bit of normal life and I was clinging onto that, but mainly I was just focused on making lunchboxes for my daughters, cooking tea and seeing out the day until bedtime. You can imagine, as someone who loved to do EVERYTHING ALL DAY LONG this was starting to take its toll. Depression definitely reared its head, especially when you start turning down things, and seeing other people go off and have fun without you all the time. Fun definitely went AWOL over this period.

I began limiting myself, effectively forming a safety blanket to stop me meeting stressful situations, but what I was actually doing was pulling myself away from society and building a little mental prison for myself. I see that now, but when you’re clutching at straws, looking for every possible solution to a problem that doesn’t have a cure, you do what you can.

At this point my friend suggested I joined a course called The Fern Recovery Programme which was run by Long Covid sufferers who had come through it and out the other side. That was the type of course I needed!

I learned to be kind to myself, but not restrict myself. Small steps. To heal properly I had to remove stress from my life and look at every part of me and my life that might cause stress and deal with it.

There was a fascinating element which really stuck with me – many of us in my group would walk about the house all day long with little effect, but if we took ten steps outside we would grow exhausted. There was clearly something weird going on. Were our brains playing tricks on us?

I read books. Breathe by James Nestor, Cured by Jeff Rediger and many others – especially ones by people who had dealt with ME. If this is something one can say, I am lucky to have a few friends with ME. Incredibly busy people, doing amazing things, and I’ve seen them go through hell, having their lives broken apart. I was experiencing many of the same symptoms and they gave me such support – just having people to talk to who understood the tiredness, who understood how weird it is and who knew how the world thinks it’s just a case of getting up and getting on with it.

You cling on to little moments of hope, because you know the old you is in there, somewhere.

I had found that somedays would be better than others. I realised I could still get lost in worlds – writing, drawing – and come to a few hours later noticing that I hadn’t felt tired. And then when I thought that, the tiredness would quickly follow.

Like a jigsaw coming together, I was understanding all the little elements that would get me through the day. I was working out that yes, my brain was playing tricks on me. Something had broken in me, but my body was healing – my brain was just not keeping up!

I have quite a lot of grit and determination (I like to think it was formed out of years playing rugby and getting cold wet and beaten to a pulp on a regular basis,) and as the months wore on, I slowly hacked my brain. I started having therapy. I taught myself that life was still possible.

Interestingly, I found my best days would occur when I forgot about Long Covid. As time went by, some days would be like the old days. I could swim in the sea and not crash. I went to a gig and didn’t fall apart (Grandaddy playing a reworked version of the Software Slump was phenomenal.) I finally could taste and like coffee again. I met up with friends and didn’t get the crushing shakes. I should note, we’re talking about a year or two here, but that was one of the fundamental elements of getting better – time, and the day-by-day gradual forgetting of things and growing of new things. I joined a pottery class to get me out of the house. Admittedly it was just a five minute walk away, but it was perfect and like being back at art school. I was remembering what the old me was all about.

Each day a few more steps, each day a little more of something until the person who might spend a day lying on the sofa no longer existed.

Throughout all of this, I kept trying to make things. I did some painting, paid a builder to help me build a shed (I try and build at least one shed each year), wrote a new story called The Little Shop of Magic… I mean, one of the best things about being a writer and illustrator is that you get to draw and write sitting down anywhere!

Also, I should add, all the emails and messages from readers of my books, particularly Hotel Flamingo absolutely helped me through the darkest days. Writing children’s books might be difficult at times for all sorts of reasons, but there is nothing more humbling and joyful than hearing that a child loves your characters and books.

I wrote Hotel Flamingo as a counter to the experience of Mum dying of cancer. I wouldn’t say it was a method of grieving, although any reason to feel happy is good, more an attempt at writing a book about how joyful the world could and should be. I wanted to put something positive out there, and I like to think that that act has paid me back tenfold over the past few years.

Enough time has passed now that I don’t feel that I have Long Covid any more. I tell myself that day in day out, and I’ll probably keep telling myself that until I die. I’m determined to make it true. My stamina for exercise is zero, but I’m building it up slowly. I have tired days, but that no longer stops me. I’m pretty much the Alex Milway I used to be, just without the Cossack dancing. Best of all, I haven’t had the shakes for a year now, and if I do get nervous I don’t equate them with Long Covid – I’ve rewired my brain to know it’s just nerves.

It’s only the past few months that I’ve come to terms with filling my days again. I make sure if I have a big few hours, I’ll go and do some breath work, or even just meditate for twenty minutes. Management is key!

Feeling like myself again… and now ready for a nap!

Because of this I felt ready to do the Kickstarter campaign. It’s taken so much work to bring a project like this to fruition, but as I write we only need to gain about £400 more in order to have it fully funded. That would be the most perfect end to a difficult few years, and all because my readers, friends, family and supporters are absolutely the best in the world.

If you haven’t signed up yet, there’s only a few of the limited edition Hotel Flamingo prints reward tier left, so hurry! Here’s the link.