Cheat code for the chronically tired: make your world smaller

Up, Down, Triangle, Square, Quit Instagram, Start a Hobby

While most people are playing on normal mode, we’re on expert mode and missing half the buttons on the controller. But if you’re like me, you probably still tell yourself that you’re not doing enough.

Most of the time, we’re way too hard on ourselves.

Because it is a heroic thing we do, living with chronic illness. Some days it takes so much will and strength and grit to just be able to get up in the morning, when you feel like your energy levels are on a strict budget and you’re already overdrawn.

It’s just heroic, what we do, and we don’t get recognised or rewarded for it. It’s just silent, invisible, hard work going on all the time.

So if you feel like you haven’t done anything this week: you have. I can guarantee you’re doing way better than you think you are.

Here’s why you’re underestimating yourself

I think it’s the fatigue that really makes it hard for us.

The pain, sometimes you can push through pain, sometimes, if you have the energy, but when you’re hit with fatigue, it’s different, isn’t it?

I just can’t push through fatigue. There’s just not that energy there to just push through - there’s just no way around it, you just have to slow down, you just have to pace yourself.

You have to do less. And I find that difficult to accept.

I bet you do too.

I find it really difficult some days to pace myself.

I find it difficult to accept that I can’t do as much as my friends, my neighbours, people I see on TV, people I see on Instagram going on all these adventures (one of the reasons I’m quitting Instagram). It’s difficult to accept that my life is smaller, that it has more restrictions on what I can do, how much I can do.

It doesn’t help that social media amplifies this like a megaphone.

We constantly get messages, every day, from society, whether it’s adverts, or TV or social media - telling us to always be doing, always be striving, never slow down, make the most out of every day, you know. Don’t miss out on opportunities. Achieve your goals! Climb mountains! From all directions you get these messages telling you that life is only worthwhile when you’re busy doing great things.

And I don’t know about you, but that makes me feel really anxious, when I’m in bed, aching, too tired to move, that I’m - missing out.

But here’s a little secret.

It’s something that I’ve learned over the 24 years I’ve had axial spondyloarthritis.

Forget the big stuff.

Forget the people climbing mountains and going out with friends and posting all the highlights on social media.

Those things don’t matter.

Stop comparing your life to artificial highlights of someone you haven’t even met.

It’s the small things which really matter.

You don’t have to climb a mountain to find meaning in life.

Outside my house there’s a flower growing between two paving slabs. It’s just emerged. This beautiful little thing, living against the odds, in this tiny little crack in the ground. It’s root has been growing under this slab of stone, searching for the tiniest opening, and it found it. It formed a shoot, leaves emerged, a flower grew, opened into the sun.

That’s amazing. And it’s right there. Right under my nose. Just quietly being awesome.

Looking at a painting you like. Reading a good book. The smell of a book - it’s funny, whenever I smell the pages of a new book, it always takes me back to the first big books I read when I was a kid, the Redwall series, Mossflower, Matthias the mouse living with all the other mice and moles and other woodland creatures at Redwall abbey. It’s one of those wonderful quirks of the human brain, the strong association between certain smells and childhood memories.

Oh man, and I used to spend hours, hours painting tiny little miniatures of orcs and goblins and elves to play with. I would just get such satisfaction from finishing every one.

And there was no social media when I was young, which I’m so grateful for, because there was no taking photos and posting it to show off what I had done - I just had to be quietly satisfied on my own, looking at this tiny painted miniature.

But somewhere along the way of growing up, I think I lost that ability to just be happy doing these quiet small things.

Maybe part of that is just growing up and getting lost in the stresses of being an adult.

But I think part of it is social media. This constant stream of other people’s successes and highlights. It can make small things seem insignificant. But they’re not.

Living happier in a smaller world

So I’m trying to just learn to turn all that off for most of the day, just tune it out and tune back into my own small world, the world I used to live in when I was a kid in my bedroom, painting miniatures and just - being content with that. Because that mindset I think can help a lot when you live with chronic pain.

So if you feel like you’re not achieving anything, if you get depressed like I do because you feel like you’re not trying hard enough, here’s probably one of the best pieces of advice I can give. Stop comparing yourself to others. Most people live in a different world to us. Most people don’t wake up in pain, and go to bed in pain, or get tired after doing one thing, or have to take a million different medications, or whatever it is you deal with.

Most people couldn’t even live 2 days with lives like ours and think, WHAT THE F**K IS THIS? How am I supposed to do this?

So, that’s what I’ve leaned to do. It doesn’t always work. But when it does - it makes me happy. Because I realise, if I just stand back and look at my life in isolation - my small life, doing small things, even though I have a chronic illness, if I just try to do what I can within my limitations - that’s enough.

And if I can’t, if all I can do is just tell the world to go away and leave me alone and stay in bed because I just can’t do it today - that’s okay too, because even superheroes need days off.