there are millions of us
who at periodic intervals
stare into space
furrow our brows
tense our eyes

as we try to decipher
this pain signal we are tuned to
on a channel of static
and noise

this hidden signal
grounded in our bones
repeats up our spine
leaping out the top of our heads

transmitting to some intangible plane
a ball of incandescent blue light
of human shaped axons, connected
spinning slowly through the void

by James Allen

this patch of moss, for example
a quiet miniature jungle softly
sponging under my playing finger

the way that shoot emerges further each day
from winter-worn nubs

a blue tit clinging to brick outside 
my bedroom window, elongating
to see me staring back, then gone
in a blur of white and yellow

my heart fluttering

if I can just flit between
these small things in life

if I can just stop
thinking

by James Allen

I can't find anywhere quiet
to lie down
to take the pressure
off

just this spiteful seat

all life and heat must have drained
down straight lines into the concrete
base of this city bench as the cement
bonded with water and set

so I put my hoodie up
and walk out of this
hard jungle of smog
and spit

letting my phone and watch
fall to the ground
along the way

walking until I see green again

walking until I can lie like the ape I am
on the warm trunk of a tree
curves of bark embracing tenderly
the arches of my aching back

by James Allen

Us humans have built an incredible un-natural environment around us designed to keep us warm, dry, safe, and facilitate all the technological advances which enable us to build hospitals, schools, supermarkets, and all the other things which provide us with our modern lifestyle. There are huge benefits of course, but there are also some costs.

One obvious one is our detachment from the natural environment which our bodies are evolved to live with. In part, this is the point - the natural world harbours diseases, parasites and predators which can kill us. But it also contains open space, calm, peacefulness, and lush natural environments which are a feast for the senses.

Watching any documentary on wild apes, I am always struck by how relaxed and easy life appears, at least for most of the time. Apes lounging around, grooming, making tree nests, climbing trees, foraging for food. Relaxed bodies. Calm minds.

Of course, there are also periods of high tension. Apes can be aggressive, they can fight intruders or go on hunting parties, they can have internal disputes. But generally these seem to be occasional and short-lasting.

It occurs to me that this is the kind of environment our bodies are evolved to live in. Calm and peacefulness for most of the time, anxiety and high alert for brief moments.

But this isn’t what we actually live in. What we live in is the inverse: a world which stimulates us into high alertness for most of the time (mobile phones, social media, TV, 24 hour news, work, driving, worrying about finances), with only brief periods of calm.

From everything I’ve read, such as this NHS patient information leaflet on chronic pain and stress, this kind of environment can only amplify chronic pain and fatigue.

It also explains why relaxation techniques can be so helpful. Last week I started a free science-driven relaxation programme called painTRAINER. I’m finding it helpful for reducing tension caused by my chronic pain. Week 2 involves learning how to do small 1-minute relaxations throughout the day. The goal is to get into the habit of doing several of these (10-20) every day, whether you’re sitting, standing, waiting at traffic lights, doing laundry or whatever - just stop, take a deep breath, say the word “Relax“ in your head as you slowly exhale. Or, taking a cue from our ape cousins, I might just find a soft place to curl up for a few minutes, or go outside and touch and smell some grass.

I don’t know how well it’s going to go, as I often find it hard to build a new habit, especially one which needs doing several times a day. I might get a cheap watch with an alarm to help me, or the programme suggests leaving reminders around the house like post-it notes or adhesive dots.

Why not try this out with me and let’s see if it helps. Every hour or so, just ask yourself - what would a bonobo be doing right now?

I found this free meditation yesterday. It’s about 20 minutes long. I personally found some of the background music in the first few minutes a little distracting, but this soon changes to some good quality nature sounds. Nice!

Free meditation for chronic pain: https://www.meditainment.com/pain-management-meditation

Groundbreaking discovery: telling exhausted people with long COVID to exercise more isn’t always helpful

I also found this article on New Scientist which is an interesting read for anyone with long COVID, and it also makes some references to CFS/ME. The general gist is that when you take into account the effect of post-exertional malaise, the fact that “people with long COVID” is a very diverse group for which it’s inappropriate to make generalised conclusions from studies which don’t look at individual subgroups, and a study which has investigated possible detrimental effects of exercise for some people, some forms of exercise may in fact be detrimental:

Exercise advice for long covid may be doing more harm than good - New Scientist

A non-pretentions poem for people who are too tired for poetry

I have no time for the kind of poetry written by people with degrees in english literature which can only be understood by other people with degrees in english literature.

When I came across Billy Collins for the first time, and realised that poetry can be both accessible and beautiful, it was like an explosion went off in my head 🤯

It inspired me to start writing my own. This is one I call Matchbox Train. I had the inspiration for it when coming home one day on the train.

Matchbox Train

by James Allen

a matchstick figure is seated on its train home
staring at an open notebook
of exhausted paper pages

fatigue and pain
no longer
distinguishable

the figure is dredging depths
looking for words to lay
between the parallel lines

the tracks lay empty
as the glue joining its matchstick legs
seeps slowly into the seat

the diesel engine roars to life
brutal mechanical force vibrate
through splintered, rough-hewn aches

and the gentle rocking of the empty carriage
carries through the figure
matching its drugged languor

the figure puts the notebook away
and sets its matchsticks length-ways

settling into a snug-fitting box
with eyes closed now

existing only as wood and glue and ache
and a swaying pendular motion

passenger and train merging
into a coalesced whole

Footnote

When I’m not writing poetry or learning about the science of chronic pain and fatigue, I’m working on my symptom diary app for Android and iOS. It’s 100% private, ad-free, customisable, and also allows you to draw your pain in 3D

Today I came across a free, online training exercise programme for chronic pain, and so far I like it. It’s actually helped me release muscle tension I get pretty much all day, every day, due to chronic pain, so much so that I ended up stretching and yawning at the end of the first session. This is a really good sign, as I’ll explain below.

By the way, if you want to try this programme for yourself, it’s called painTRAINER.

https://mypaintrainer.org

painTRAINER is 8 audio sessions designed to teach relaxation and pain coping skills, each lasting about 30-45 minutes. It’s made by researchers and healthcare professionals at Northwestern University (Chicago, IL, U.S.A.) and Duke University (Durham, NC, U.S.A.), and has a reasonable privacy policy.

Just a quick note - I’m not affiliated with painTRAINER in any way, I don’t know the creators of it, we’ve never spoken, they aren’t paying me in any way to write this. I simply want to share something I found that I like.

The power of panticulating (yawning and stretching)

Foxes do it. Giraffes do it. Babies do it. Tigers so it. A stretch combined with a yawn, sometimes called pandiculation, seems to be pretty much universally enjoyed across all vertebrate animals (from the Latin vertebrātus meaning ‘jointed’, which stems from vertere meaning ‘to turn’).

Mammals, birds, reptiles, amphibians, even fish love a good yawn and stretch. When you see this kind of universal behaviour, it usually means it’s quite important, in a fundamental way.

So what’s going on here? Surprisingly, there doesn’t seem to be a clear scientific consensus, at least according to this PubMed paper I read. Theories range from stimulating wakefulness, to cooling the brain (yes, really), social reasons, to help ear pressure.

A lack of consensus between scientists on an issue is awesome, because it means there are still things we don’t know which are waiting to be discovered. Which is why scientists get up in the morning - to learn, to understand things.

In the meantime, we get to wonder and postulate about yawning. Personally, after years of practicing somatics (a kind of gentle movement exercise similar to pilates, but focused on relaxation) to help with my chronic joint pain, I prefer the somatics explanation to pandiculation. This theory suggests that it’s a mechanism to relieve tension in muscles.

What you will experience for yourself in the first session of painTRAINER is something I’ve come to experience time and time again in somatics: that a simple contraction (tensing) of a muscle, followed by a slow, gradual release, can have a profound effect on relaxation, and letting go of muscle tension.

For me, this makes sense. At the end of a really good meditation or somatics exercise, I often feel the need to yawn and stretch, when my body is feeling more relaxed, less tense, and free to move. And if I don’t, I actively try to trigger a yawn by acting a fake yawn - it’s surprising how often this can trigger the body into actual, real yawn. Combine this with a nice, long stretch - it feels great.

So the next time you’re sore and aching with pain in your joints and muscles, while the world is telling you to “do more“ and “push harder,” listen to your body - it might be whispering, “what if we just… yawned instead?”

But a surprising method for helping people with chronic pain is gaining attention: neuroscience education. I’ve decided to try it out for myself. Here’s why.

Why I’m trading in despondency for scientific papers

I’ve lived with chronic pain for over 20 years, and in all that time, I’ve never really understood how pain works.

It was just something that was there, and far from wanting to understand it, I did everything I could to ignore it, distract myself from it, or wish it would just go away.

Which is understandable - there’s a reason why chronic pain sucks so bad, because pain is supposed to be temporary.

It evolved in our bodies for a purpose. It’s nature’s way of telling us that something is wrong. So that when we get some kind of injury, we know about it. We stop what we’re doing, we stop moving the part of our body that’s in pain, because pain is deliberately unpleasant, it’s very hard to ignore, it makes us alert, it stimulates our brain and our body to get our attention.

Normally, this is useful, because it means we attend to the injury, we heal, we get better, the pain goes away. If we’re walking around in the wild, and we cut our foot on a rock somewhere, if we didn’t know about it, that would be really bad - not knowing we were injured could actually kill us.

That’s why pain exists.

But when pain goes wrong (and there are lots of ways it can go wrong, as we spoonies know all too well), when it becomes chronic, those bodily reactions are no longer useful.

When pain is chronic, it still creates this alert, stressful emotional state, but it doesn’t help us - because by definition we have a chronic health condition which isn’t healing and going away.

It makes us feel like there is danger, there is something wrong. It has become mal-adaptive, meaning that it has become more harmful than useful. And this is what makes chronic pain so hard to live with, and why it contributes so much to our fatigue.

Can neuroscience education actually help chronic pain?

It’s possible that learning about how pain works can actually help.

I did a brief (very un-scientific) survey of some recent medical journal papers on PubMed which asked the question “does learning about pain help”. Some of the papers I read offered some (often weak) evidence that it may in fact help, and these papers studied a range of health conditions including fibromylagia, migraine, plantar fasciitis, chronic neck pain, spinal pain, and inflammatory arthritis. It’s unclear if the effect is long-lasting. See the references at the bottom if you’re interested in reading these yourself 1

Why is this?

Well, the thinking is basically this. When we feel pain, our natural, innate reasoning for this is that our bodies are actively being damaged, that our bodies are under attack, and this understandably creates a sense of fear, anxiety, it activates our fight or flight response, and in chronic pain this actually exacerbates the pain.

But in many chronic conditions, like with fibromylagia, the pain isn’t being caused by our bodies actually being damaged like they are when we break a leg or stub our toe.

And in other cases like in my condition, axial spondyloarthritis, there is some damage caused by the immune system attacking cells in my body, but due to something called central sensitisation the amount of pain I experience and the amount of damage that it feels like is happening is exaggerated quite far beyond what is actually happening.

According to my brain, a slightly inflamed joint is equivalent to a five-alarm fire in a fireworks factory.

So by learning why this is, by learning what is actually going on, and teaching our brains that it’s okay, you don’t need to be on high alert anymore, maybe chill out and relax a bit because we’re not being attacked, the pain itself isn’t a threat to our lives - research shows that people who learn about the neuroscience of pain actually feel less afraid of their pain, feel less anxious, feel like they are able to live more peacefully alongside their pain. And by learning that some chronic pain isn’t always caused by actual damage to your body, it can become easier to move and stretch and exercise.

I don’t know about you, but with axial spondyloarthritis, movement and exercise does help. But it’s just so hard to motivate myself when I’m tired and I’m in pain all the time. But just knowing that actually, the pain is being amplified by my brain and by moving I’m actually not damaging my joints, even though it feels like I am, is just a little extra thing that can help me decide - okay, yeah lets move a bit.

I should also point out that one of the papers I looked at did not find that learning about pain helped, and some only showed only small effects, which may be insignificant or temporary. So, it’s important to let go of any particular expectations of your pain significantly reducing or changing in any way by learning about pain.

But I can tell you this. I have found that it helps me personally to live with chronic pain, and many other people say the same.

Regardless of whether it actually effects our pain, I believe (I’m using the word believe to emphasise the fact that this is purely an opinion, not a scientific conclusion) that if you live with chronic pain, it can be empowering to learn more about your condition, to learn the real science behind what’s going on in your body, because it makes you feel more in control, instead of pain being in control of you.

I think it also makes us better patients. When our doctors offer us a new treatment, or a new medication or exercise comes along, we’re better informed to make a decision about what’s right for us. It means we can take more of an active role in research, and understanding what scientists are doing so that, maybe for example we can help raise money for research into better pain relief for example. And it means that we can understand better why something like cognitive behavioural therapy can actually work.

And when you live with chronic illness, any advantage you can get is worth a try.

how wonderful it is
to share this moment
with you

you reading this poem
me writing this poem

our shared experience
of pain, so vast
and weariness
so
deep

that finally
no explanations 
are needed

no misunderstood
intentions fall
between us

just clear
fresh air
to breathe

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.

You know what it’s like to wake up exhausted, to spend the whole day managing pain, fatigue, brain fog - and then do it all again tomorrow.

You also know how challenging it can feel to live in a body that doesn’t cooperate — in a world that mostly expects it to. It’s hard to explain what it’s like without living it.

That’s why spaces like this matter.

Because here, you don’t have to explain. You can just be who you are.

Why I’m writing this

I’ve been living with a chronic autoimmune condition for over two decades.

It’s the kind that affects your joints, your energy, your plans — your entire life, really. Some days it’s manageable. Other days, it’s… not.

Over the years, I’ve learned a few things:

• That life doesn’t follow the script you thought it would

• That pacing yourself is hard, but ultimately easier than not

• That small things matter more than big ones

• And that connection with people who understand is great medicine

But getting that connection in real life? It’s not always easy.

When you’re chronically ill, even meeting up with someone can feel like coordinating a miracle.

So we end up doing a lot of this alone.

Or at least… it feels that way.

My story (a very short version)

My symptoms started when I was 17.

At first, I tried to push through — do the “normal life” thing. University, career, social life. But over time, the pain and fatigue got worse, and pretending I was fine stopped working.

Eventually, I hit a wall.

Counselling helped me realise just how much I’d been bottling up — fear, frustration, grief. Saying “I’m in a lot of pain” out loud was a turning point.

Later, I found a treatment that worked incredibly well… for a while. I got a glimpse of what life could feel like without constant pain.

And then it stopped working. That crash back down was hard.

At one point, I went through what I now call The Big Flare — months of severe pain, barely able to move, stuck between bed and sofa, just trying to get through each day.

That really challenging episode was a turning point.

What helped (and what changed)

Two things made a huge difference:

1. Learning to ask for help
Actually being honest — with doctors, with others, and with myself.

2. Mindfulness
Learning to be with my pain in this moment, and be okay with it. It helped me understand something important: instead of resisting the pain, wanting it to be gone, for my life to be different, I could accept it as it was.

Instead of fighting an exhausting fight, I could let it go and just be with it. And the strange thing is, when you really pay attention to your pain with compassion, in a safe, calm meditation session, it can suddenly feel a lot less dominating. Even, sometimes, something like an old, sick friend.

Letting go of that resistance didn’t fix everything — but it sometimes gave me space to breathe again.

Where I am now

Eventually, I had to accept something difficult:

My career - the one I’d worked so hard for - wasn’t compatible with my health.

So I left it.

Now I work for myself, building a symptom tracking app for people with chronic illness. It’s far from easy, and I earn a lot less than I used to…

…but I have something I didn’t have before:

Flexibility. Control. Breathing room.

And most importantly - a purpose.

What This Space Is About

This Substack is for:

• Sharing the reality of chronic illness — the good, the bad, the absurd

• Connecting with other people who live this every day

• Sharing my knowledge of tech and privacy to raise awareness of how to control your health data

• The occasional update about my privacy-first symptom diary app Chronic Insights

Your Turn

If any of this resonates with you, I’d love to hear from you.

What’s your story?
What’s been the hardest part for you?
What’s helped, even a little?

You can reply here, or just stick around and read — both are equally welcome.

You’re not alone in this.

— James 💜