Introduction

Hey spoonies, welcome. I’m James Allen and it’s so, so good to have you here, and I really mean that. Thanks for joining me. It’s so good to be with other people who know what it’s like to be chronically ill, to have chronic pain and fatigue and all the, everything that comes with living with that every day. Because other people, I mean people who are generally healthy, they don’t really understand, right? I mean, I love my family, my besties, they support me and love me back but, even so, they don’t really know what it’s like to wake up tired, spend all day tired and achey, the slightest wrong thing or doing too much and you’re body just says: ‘er, nope! What do you think you’re doing?’ and then you’re, you’re totally wiped out, and then go to bed and maybe get some sleep, and then - same the next day, and the day after. Ugh, I mean, I try to be positive, and - there are always good days, or at least better days, and I’ve learned over the 2 decades of being chronically ill that - there’s so much that being ill can teach you about life, about acceptance - about cherishing small things, about - going at your own pace, not just following what everyone else does - there can be a lot of good that can come out of - all of this. But the point is, it feels so, so good to be around other people who are going through the same thing. It’s so good. I mean, it’s just the best feeling, to be talking to someone who, you don’t have to explain everything to, because they already know! Because they also go through this constant struggle, this battle that we have to fight every day that nobody else really sees, that we - I mean, it feels like we have to face kind of on our own sometimes. Or at least, it can feel like that, especially when you don’t know other people in real life who are also chronically ill. I don’t know many people, maybe 3 or 4, in real life who are chronically ill, and - the thing is - we hardly ever meet, because, guess what - we’re chronically ill! So the chances of both of us feeling good enough to venture outside the house, and not feel like we’re going to be uncomfortable or in pain or going to catch covid or something, on the same day, and be able to coordinate that through brain fog! There’s about as much chance of that happening as there is me running the London marathon backwards in a mankini. It’s possible, but highly unlikely. Although saying that, I did do a half marathon back in 2010 I think it was, to raise money for NASS, the National Axial Spondyloarthritis Society, back when I had a really, really good spell and my joint pain was really well controlled for a couple of years and… actually, you know what, I should probably - seeing as this is the first episode, instead of my usual topic for the day, it probably makes sense just to introduce myself so you know who I am and what my back story is. So, let’s do:

*Reverberating voice* Topic of the day

So, I have an auto-immune disease which super-helpfully, has two names - because doctors recently changed how they classify it. So, it used to be called the wonderfully named Ankylosing Spondylitis. Yeah, thanks for that doctors, really helpful to have named a disease which is almost impossible to spell. So when they changed the name a bit I was hoping for something a little more, I dunno, cool, but they came up with: axial spondyloarthritis. Oh well, what evs. Most people just call it AS. Much easier. Basically, it’s a form of inflammatory arthritis which causes pain in my spine, hips, shoulders, neck, ribs, sometimes my knees, sometimes my jaw, it varies every day, which is nice - i never know what I’ll get each day, so it’s always a nice surprise when I wake up. Ooo, it’s a spine day today, yaaay! And it causes fatigue - something to do with the autoimmune response and something called cytokines in the blood, or something - so on top of the tiredness I get from just being in pain all day, I also get this kind of - always feel groggy like I’ve got the flu or something, so I’m basically - really tired most of the time. So I do get brain fog a lot, which I’m sure you’re familiar with too, to the extent that it actually becomes funny sometimes - like I can be talking to someone, and mid conversation, I can just totally lost track of what I’m saying, and i have to say - sorry, what was i talking about? Like I can glaze over and start staring into the distance when I’m talking, let alone when someone else is talking. Or, I can just forget the name for something - like yesterday I forgot the name for oven glove, and I just had to point to it and say ‘whatever that thing is called’! Because I was just, really achey yesterday, trying to make dinner in the kitchen which was really really hard because my hips were aching, my neck was aching, I was trying to chop carrots or something, and - you know - cheffy stuff - and my brain just kind of slowed down and stopped mid sentence because it was just so, so tired, the poor thing. Haha, did just refer to my brain in the 3rd person?

Anyway, what was I talking about - haha, oh yeah, my back story. Brain fog. So, my AS started when I was 17. I’m 41 now - so that’s - err - oh my, I’m so tired already today, I can’t even subtract a number from another number. Okay brain - you can do it - 24, is that right? I dunno, maybe. It’s a lot of years ago. Oh man, I’m so old! Haha. Oh I’m so old. Anyway, so it started with this weird swelling in my knee, where my knee basically turned into a balloon, just out of nowhere, for no apparent reason (and I now know that, for whatever reason, that was the point at which my immune system first started to recognise some of my own body cells as something it needs to attack and destroy - which is really annoying - it’s like, guys, can you just stop attacking me, we’re on the same side here!), so I had to go to the hospital, saw a rheumatologist, and was diagnosed with AS, which is rare - i was lucky, because most people take years to get diagnosed.

And at first, I just - didn’t really know what to do, and for the first year or two it wasn’t that bad, so I just - carried on as normal, just trying to - do the things that I had planned for my life, you know - I wanted to go to university, get a job, you know - do the things - you’re supposed to do in life. But, it gradually got worse and worse, until I suddenly realised - I’m really, really struggling here, and I just don’t know what to do, how am I supposed to do this? I’m supposed to go to lectures every day, go out, socialise, have fun, but all I want to do is just - wrap myself in a duvet and sleep because all my joints hurt now, and the medication doesn’t help very much, the painkillers don’t really help very much, and I’m always tired, so - WTF? I mean, what is this? What’s going on?

And eventually I went to see a counsellor - which was the best thing I did. I highly, highly recommend seeing a mental health counsellor or therapist or anyone you can just - talk to, who isn’t family or a friend, just someone you can - unload on, someone you can just - say the things that are bottled up inside without worrying about what they think, because all they’re there to do is listen, and help. And I really, really needed that, so bad that I had a little breakdown in the first session, because there was just so much - frustration, and fear, and anxiety, and anger, and confusion, and - just - despair, that I hadn’t realised was so bottled up inside. So I was just in tears, but - good tears in a way because it was probably the first time that - I realised I needed help - and the first time I really expressed that.

So that was my first turning point, and I got much better at telling people that I was in bad shape, that I needed help. And that made a big difference, because the next time I saw my rheumatologist, instead of doing the usual dumb man thing of saying, yeah, I’m fine, the drugs are helping, everythings good, okay see you in 6 months - I was actually honest, and I said - I’m not good, the pain is really bad, I’m depressed, I’m unhappy and frustrated, and I don’t know what to do. And it was then that he told me about a new type of drug that I could try, a weekly injection, called a biologic. And the reason it wasn’t offered before was because - they’re really expensive so they’re not used as the first option, and he thought I was managing okay because - that’s what i was saying, because i was too scared to be honest and say the words “I’m scared, and I’m in pain all the time, and I don’t know what to do”!

And, this new drug, when I started taking it - it was called adalimumab - wow. I mean, just, literally within days, I was feeling so much better. I could move my neck in ways I hadn’t in years. The pain was almost basically gone. It was - life changing. I couldn’t believe it. And I was like - oh this is what it’s like to be well! No wonder people have so much energy! No wonder they can do so much stuff, and then go out at night and have a good time, and then just wake up and do more stuff the next day too! And that’s when I did a half marathon for NASS. The Great north run, near where I live in Newcastle and Gateshead, in the UK. I couldn’t believe it.

But it didn’t last. After, 2, 3 years - it started wearing off. The drug stopped working. And that was - just so hard to take. It was just - to have the dream, of being well again, dangled in front of me, and then have it slowly slip away again. That was really, really hard. I managed to switch to a different type of biologic injection, but it just was never the same again. I’ve tried a few now, and they all - kind of help, a little bit, but nothing like it was. And by this time, I was working full time as a consultant in IT, which involved travelling, and meetings, and managing projects, and the pain was getting worse, so I started having to cancel things at the last minute - a lot - which was super, super stressful, which definitely made the pain worse. I mean, having to explain to a new client why you have to cancel an introduction meeting because you’re flaring, having to explain what AS is, having to get other people to fill in for me, apologising because I feel like I’m letting people down (even though I’m not, but I still feel like that because, you know, I’m human), wondering if people really believe me because it just keeps happening, and always at the worst possible times too - it was like the AS knew exactly when to strike to really just screw everything up (and you know, I wonder if - there was an important meeting, I would start stressing about it, and that would actually cause the flare - I dunno). So I just ended up in this downward spiral.

And then - The Big Flare happened. Haha, I think it even needs it’s own bumper:

*Reverberating voice* The Big Flare

It was big. We’re talking, 8 months of hell. Just, excruciating pain, I could barely move without just massive, massive pain, just walking with two crutches was almost impossible because of the pain in my hips, my knees, my ankles were both really swollen, I got back spasms, I couldn’t sleep, I couldn’t really leave the house, I had steps outside my house which I couldn’t get down without someone to hold on to me. And my life just turned into - existing in bed, or for a bit of excitement I might make it to the sofa, or to the toilet - like, you know on a plane journey when going to the loo is the most exciting part - and I had to really carefully plan out every move, so like: if I was going to make the effort to somehow get out of bed (which was the most painful bit), and go to the sofa, I would plan it out so that I only had to get up once: so, I would list the things I wanted, like a hot water bottle or a book or meds, where they were in the house, so I could do one walk and get everything before I sat down again (which was the second most painful bit) but it didn’t really matter, because when I got to the sofa and at down I would always always realise I forgot something, and I would go ‘Oh *******!’

So that was my life for a very long time, just going to hospital appointments for scans, appointments, treatments, infusions, and I pretty much hit rock bottom emotionally. I was just devastated. Because I had been doing so good, and now I was doing worse than ever. I couldn’t work. I was in a really dark place, just - lost interest in everything, in my life, I just - didn’t see the point anymore.

And then, I discovered mindfulness. I was going through audiobooks like crazy, it was one of my escapes, that and Netflix, basically. And i came across an audiobook on mindfulness meditation. And it was the first thing that i had listened to in a long time that seemed to make any sense. It really, really - it was just what I needed at that moment. And there was even a chapter on mindfulness mediation for chronic pain - it was one of the Great Courses on Audible, by Mark Muesse, and it helped so much to just listen to someone explain why I was feeling so down, in such despair. Because I was mourning the life that i lost, because I was trying to hold on to things that I wanted, and wanting desperately for my life to be - different. And that I was just stuck in this loop of resisting and hating the pain so much, that there just wasn’t room for anything else. And when I realised that I could - think differently, that I could try to let go of my desire to escape, and for the pain to go away - when I just accepted life as it was, I just - started feeling - better. More at peace, even though I was in pain.

And luckily, the Big Flare did eventually ease a bit. And I came to terms with the fact that my job just wasn’t compatible with my health, and that i couldn’t realistically do it anymore. It was actively harming my health. So I - quit. It was really, really scary, but I decided to quit and start my own thing. I started developing a symptom diary app for people with chronic health conditions, and that’s what i do now. And, it’s been really, really hard, doing it all on my own, and it’s had it’s own frustrations and scary worries and just - there’s so much I didn’t know about running a business, and I messed up a lot of things - but, being able to work to my own hours, to work around my pain and fatigue, had just made a massive difference. So even though I earn waaay less than I used to, like, barely enough to get by, I’m just a lot happier because it works so much better for me than a regular job.

So that’s what i do now - I’m still working on the app, and just trying to help others through chronic illness, because it’s just the only thing that i have a passion for anymore - helping and learning from other spoonies. And that’s why I started this podcast.

So that’s me - what about you? I’d love to hear from you, so feel free to email me at james@chronicinsights.com or DM me on instagram, @chronicinsights. And, speaking of my app, it’s time for:

*Reverberating voice* App update

So, this is just an update for people who are using my app. If you don’t know what I’m talking about, it’s a symptom diary app called Chronic Insights, you can get it on the app store on android and iOS, and it lets you record symptoms, and a whole load of other things that might affect your symptoms, and see charts and export PDFs and stuff, you can use it with Apple Watch and Wear OS, and you can record pain on a cool 3D mannequin which you can rotate and zoom and show people what you pain lools like.

So for people using the app, er, I just released an update which should be live, if not now then in the next day or so, which fixes a bug in syncing with Wear OS watches, so if you’ve been having trouble setting up the app on Wear OS watches, like the Galaxy Watch 5 for example, this should be fixed now. It was a weird problem, and it took me a while to figure it out, because I had a couple of people write in to say - it wasn’t working, their symptoms didn’t appear on the watch. And I tried it myself at home on my development version and, it seemed to work fine, so I was like: this is weird. And, I’ve been having a bit of a flare the past few days, so more achey than usual, so I was brain fogged too, and i was just staring at the watch, and at my code, and I was just - not getting it. And then after hours of looking I eventually noticed that the error logs on the published version of the app was different to the logs I was seeing at home. And then the penny dropped. So, what had happened was: and sorry this is a bit technical, but I thought it might be interesting to some of you who are interested in how app development works behind the scenes: when I send the app to Google to publish, there is this extra step involved called minifying, where the code for the app is shrunk down in size, to make it as small as possible, which means a smaller download size for the app. And one of the ways it does that is by renaming things to shorter names - so, the phone app sends the symptoms to the watch as messages, and the message contains headings like - symptom name, colour, the latest reading, and so on. And what was happening was that these headings were being renamed to A, B, C and so on. Because the letter A takes up less space than ‘symptom name’. So, the watch was getting the message, but it was like: what is this? A? I don’t know what that is. So it just didn’t update. And because this shrinking only happens when I publish it live, it didn’t happen when I was testing it at home. So my poor brain fogged head just didn’t think of that.

So anyway, that problem slipped through, but it’s fixed now, thanks to everyone who let me know. Because I really, really rely on you to help me make the app better, because - most apps have teams of people working on them, like literally - teams of people, but I just have me, because I just don’t have the money, or energy or ability to hire anyone to help, you know, it was the whole point of doing my own thing, was being able to go at my own pace and work on my own. So please do write in with any suggestions, feedback or feature requests, I love reading all the feedback I get, it’s always so great to hear from other spoonies who use the app. Because I use it too!

Okay, so - the other thing that I do now is poetry, er, I started writing poetry about chronic illness, pain, fatigue, spoonie life, and I’m really excited to announce something I’ve been working on for a few months now. So….

*Reverberating voice* Poetry For Spoonies

Yeah, so this is really exciting. I’m working on a book. An actual, real physical book of poetry I’ve written, it’s called Poetry for Spoonies, and I’m in the final stages of laying out the poems, each poem has a beautiful oil painting illustration made specifically for that poem, and it’s starting to look - really, really good. It’s just, I’m actually amazed how good it’s looking. So, that’s just a little teaser of something that’s coming soon, you’ll be able to order it online and I’m just so excited to hear - what other spoonies think about them, because they’re all about spoonie life and what it feels like. So I thought I would read you the first poem from the book to end this episode. Here it is. It’s called Spoonie to Spoonie.

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

Which I think sums up quite nicely, how much of a pleasure it’s been to talk to you and to have you here, so thank you for joining me, thank you for the love, I’m sending you love and spoons and hugs because we all need them. And remember, you’re not alone. Okay, see you next time. Bye bye.