It’s the small things

Hi spoonies, welcome back, I’m James Allen, your spoonie friend, with another episode of Chronic Insights, the podcast for people who live with chronic illness. You can find a transcript of all my episodes in the show notes. Thank you so much for dropping by - it really means a lot. It can be quite lonely, living with a chronic illness - not because I’m alone literally, but because some days it can feel like I’m alone in this, long, long battle against pain and fatigue. So it really, it’s really nice to be able to just sit back and chat with someone who I know will - get what I mean when I say something like, I dunno, like: if I’m around other people, I still smile when I’m in pain, so it feels weird to then tell them - oh by the way, I’m in quite a lot of pain and I’m about to just keel over and pass out from exhaustion, so before I do - I have to go home now, otherwise it’s going to take me - literally - days to recover. And I always wonder if they believe me, because - i look, kind of, basically fine - but I know that you get what i mean when I say that, because - if you live with chronic pain, this probably happens to you too! I bet this has happened to you. Yeah, I can sense you nodding in agreement. Yeah, I know what you mean.

Hashtag spoonie life.

So, the past week - has been mixed, for me. I had invited my parents round for lunch last weekend, so of course, obviously, that would be the time for a flareup to start. Of course it was. Because it knows! I mean, seriously, I think my autoimmune system knows when I’m planning things, and it has secret meetings in my bloodstream, which is a weird thing to say, er, and they say: James thinks he’s going to make a nice lunch for his mum and dad, so, here’s what we’re going to do: Charlie, you get in his hips and make them feel like sand, Sarah, you get in his head and give him a lovely nice headache, Steve, now you’re the expert at making someone feel like they haven’t slept in 3 days, so just do your thing. So yeah, it was really rough, but I didn’t want to cancel it, because that just makes me feel worse, so I did it anyway and it was okay, got through it, lovely to see them, but the moment they were gone I - went to bed and curled up and fell asleep in about - 2 seconds.

And that went on for a few days, so the start of my week wasn’t super productive. But I did manage to work on my symptom diary app a bit, so I’ve got some updates to tell you about in a bit, and I made some progress with my Poetry for Spoonies book, which is exciting, I’ll end the episode with an update about that. And that’s about all I did. Which is actually, that’s a good week for me. To actually do some things, I DID SOME THINGS! That’s pretty good going for someone who has chronic pain. So, it’s time for:

Today’s chronic insight

How’s your week been? If you managed to do some things, or one thing, anything, however small, that’s an achievement to be proud of. Because it’s hard, it’s so damn hard to do anything when you feel unwell all. The. time. We can’t compare ourselves to other people, we can only live our own lives at the pace that we can manage. Which often isn’t much. And that’s okay. And if you feel like you haven’t done anything, you’re probably being too hard on yourself. I know I do when I’m having a bad week. It’s okay. You don’t have to be a superhero every day. Because it is a heroic thing we do, living with chronic illness, it’s - just takes so much will and strength and grit to just be able to get up in the morning, when you feel like - I’m trying not to swear on this podcast, but sometimes it’s really hard! - It’s just heroic, what we do, and we never get recognised 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 recognise it. I see it. I see a hero. I see heroes in all of us. We just don’t have the spandex uniform or the catchy name or the secret underground lair. You’re doing your best. You’re doing good. You got this.

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. Most days actually. 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. 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.

I think I know why that is. 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 - what was it? I worked this out on the last episode didn’t I, 24 years I think I’ve had axial spondyloarthritis, so I’ve had a little bit of time to think about it. It’s the small things that really matter. Forget the big stuff. Forget the people climbing mountains and going out with friends and posting all the highlights on social media - it doesn’t matter. It doesn’t matter. Stop comparing your life to artificial highlights of someone you haven’t even met.

It’s the small things. 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 isn’t it, 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 a kid, which I’m 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. 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.

Did you hear about that woman recently, I remember reading an article a few weeks ago, she spendt 500 days living in a cave, no social contact, no other human being to talk to, just her - in a cave - with books, water, food, I think knitting, and stuff like that. You know what she said? Quote: ‘Excellent. Unbeatable’. Because she had been cut off from all that - noise.

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, and 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.

So, I hope that helps. I dunno, maybe it’s all bollocks, but - it’s what I think. Does it make sense? Let me know, tell me what you think. Email me at james@chronicinsights.com, DM me on Instagram @chronicinsights.

So as promised, it’s time for a quick update on my symptom diary app in this week’s:

Reverberating voice: App Update

So this is just for people who are using my symptom diary app Chronic Insights (find it on the app store, please try it if you haven’t already), I had another 5 star review last week, so thanks to Nancy who wrote “what a great app!!! very helpful to track health issues. thank you for making a great and free app”. Thank you Nancy! So, most of the app is free, I wanted to make all the basic features free to use with no ads or anything just so everyone has access to a high quality and free app. There are some premium features because it’s my only form of income right now, so I have to make money somehow to earn some kind of a living and so I can keep working on the app to maintain and improve it, so the 3D feature, the watch integration, the weather integration, and spreadsheet reports, are the only features you have to pay for if you want to use them. And, I didn’t want to have ads in my app, and I don’t collect or sell people’s data, so a direct sub is the only way I fund my work. Which I think is the right way to do it. I’m quite passionate about privacy, and I hate the way other apps collect and sell your data to data brokers. If you don’t know what a data broker is, google it, and you’ll know why it’s a good thing that my app doesn’t collect any data!

So last week’s fix for the Wear OS watch syncing seems to have resolved all the problems with people not seeing their symptoms on their Wear OS watches for quick recording pain, fatigue and so on. Thanks to David and Christoph for helping me identify the problem and reporting that it now works, and thanks Christoph for the 5 star review! That’s very kind of you.

This week I fixed a little issue with how medication was showing in the Story tab, it wasn’t ordered correctly and didn’t show the time of when a dose was taken or missed, so thanks to Brendan for pointing that out. Oh, and the ability to snap symptom readings to the nearest whole number: so by default, when you record a symptom like pain for example, when you set the severity using the number wheel, you can pick any number from 0 to 10, or whatever your scale is, including fractional numbers, like, you know, 3.2. Anywhere on the circle. Some people wanted to just be able to record whole numbers, like 1, 2, 3 out of 10 and so on. So now there’s a switch in the top right above the wheel, where you can turn that on - so it will sort of snap like a magnet to the nearest whole number. That update I think was already out on Android, but this week also came out on iOS.

I made the cancel subscription button a little more obvious to help people trying to figure out how to cancel, there was a button called ‘manage subscriptions’ but it wasn’t very bold, so I think it was easy to miss, it’s now labelled ‘Cancel subscription’ and it’s in a bright colour.

And i think that was it. So, I think my next job will be to make some tutorials on Instagram, and link them into the app, because it can be quite a complex app when you get started just because there are quite a lot of features, so some people have asked for some tutorials. So expect those to appear on my Instagram next week.

Okay, now it’s time for:

Reverberating voice: Poetry for Spoonies

I’m excited. Because, I just ordered a test printing of my first poetry book, which will be called Poetry for Spoonies volume 1. Which is, quite surreal that I’ve actually written a book. It’s something that I’ve slowly worked on for, I guess something like a year or something, maybe longer I don’t even know - just whenever the start of a poem about chronic illness popped into my head, I would write it down, and then just work on it every now and then. If you haven’t tried poetry before, try it - I honestly never imagined I would be interested in poetry, but there’s something about it. That makes it easier to express what it’s like. Just, writing what you feel, whatever is in your head, write it down. Have you ever tried journaling? It’s quite therapeutic. To just write whatever is rattling around in your head, to get it out into the light.

So I’ve been doing this for a while, and at some point I realised I had enough for a small book, which is just crazy to think. I’m using Lulu, they’re a print on demand printer, so I want to see what the quality is like first before putting it on my website for sale. I’m also planning on doing some limited edition hand-made copies, bound by hand by yours truly, because I’ve been getting into book binding as a hobby. Like one of those small, quiet things I used to as a kid, just taking pleasure in creating a book from scratch, cutting the pages, sewing them together (that’s my favourite bit, I find it very relaxing), rounding the spine, creating a cover, glueing, pressing - I’m lucky to live near Newcastle which has a book binding club with all the equipment you need in this beautiful old building called the Lit and Phil, so whenever I’m having a better spell and I’m feeling brave enough to travel a few miles without my body breaking into pieces (which hasn’t been for a while actually) I love to go there and just learn how to bind books. So, I’ll be doing a few copies of Poetry for Spoonies on lovely high density paper, lovingly saddle-stitched, bound with a hard-cover and signed. If you want one, let me know: james@chronicinsights.com because I’ll probably make them to order, and it will probably take a few weeks to make them! Especially if I’m flaring.

Anyway, I’ll end today’s episode with a poem from the book, which is titled what we’ve been talking about today: “Pleasure in small things”

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

bird footprints in snow
their hidden play revealed
for one night only

here, a blackbird hops
over a patio tabletop
in that delightful manner

there, a magpie walks cleverly
to bury a nut, carefully covered
by a brown autumn leaf

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
the small things in life
flying over the lure
of large things below

Thank you for being here, thank you for keeping me company, I hope this makes you feel more connected and more at peace with whatever health conditions you live with. I’m absolutely knackered so, I’ve got to stop now and have a rest. So, I’ll see you next time spoonies. You’re not alone. I love you! Bye.