In episode 28 of the Arthritis Life podcast, James Allen shares his experience hitting rock bottom from ankylosing spondylitis pain, and how mindfulness and acceptance brought him back to a fulfilling life.
James and Cheryl discuss in detail how they both manage fluctuating symptoms and pain from chronic rheumatic diseases. James also explains how his patient journey led him to create his innovative 3-D symptom tracker app, Chronic Insights.
James Allen is 39, and has lived with ankylosing spondylitis (AS) for 22 years. He likes to think of arthritis as a clumsy housemate who moved in without permission, who he used to hate but over the years he’s grown to kind of like. It forced him to leave his job as an IT consultant, which in retrospect has been a positive development, because now he’s doing something he really loves – developing a symptom diary app called Chronic Insights.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Where to follow James:
- James’ Chronic Insights Instagram: @chronicinsights
- Email James: james@chronicinsights.com
- Website: https://chronicinsights.com/
- Book James Recommends: “Practicing Mindfulness” audio book
- Cheryl’s free webinar on March 26th – Sign up here
- Wait list for Rheum to THRIVE membership
- Cheryl’s Arthritis Life freebies:
- Free Handout: Cheryl’s Master Checklist for Managing RA
- Free Training: Arthritis Life Hack Crash Course
- Cheryl’s Arthritis Life social media pages:
- Cheryl on Instagram
- Cheryl’s website: Arthritis Life
- Cheryl’s Tiktok: @ArthritisLife
- Arthritis Life Facebook Page
- Cheryl’s Twitter: @realcc
- Free Facebook group to discuss the podcast and connect further with others: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
Medical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Here’s the show breakdown:
- 02:30 – James shares his relationship to his Ankylosing Spondylitis (AS), it’s like someone who moves into your house who at first you try to make go away, then you make peace with it.
- 05:30- Cheryl and James discuss how metaphors and Acceptance and Commitment Therapy (ACT) help them cope with chronic illness.
- 10:00 – James’ journey getting his initial diagnosis of Ankylosing Spondylitis quickly due to his dad’s help.
- 12:20 – James’ journey managing his AS; initially it was pushed to the back of his mind, then it gradually worsened over time and he sought therapy to help with the struggle.
- 17:10 – Cheryl and James’ important lessons/insights about the importance of communicating your pain levels to your providers. How hard it can be to admit you are in a lot of pain.
- 19:40 – James’ switch to his first biologic, Humira and how it changed his life for the better.
- 21:00 – Cheryl and James discuss the phenomenon that many patients are scared of medications, and how the risk / benefit analysis is different for each patient.
- 23:50 – James enjoys activities like running a half marathon while his medication worked. Then, experiences his medication wearing off after years of success, which was a massive blow mentally.
- 25:50 – James starting over with medications, trying different biologics. He experiences progressive deterioration of his health which negatively affects his work life.
- 30:50 – James’ condition progresses to where he has difficulty getting out of bed and his partner has to help him with daily living tasks. He hits rock bottom.
- 32:50 – James comes across meditation and mindfulness, leading to breakthroughs in his ability to manage and cope with pain. He learns to be curious about his pain and develops the ability to observe himself and empathize with his experiencing pain, and eventually accept it.
- 36:50 – Cheryl explains the importance of the developing mental tools to cope with the uncertainties that come with chronic pain and chronic illness.
- 39:50 – James discovers slow and gentle somatic exercise, which helps him relax and relieves joint stiffness and tension.
- 41:50 – The benefits of the reclined exercise bike and a sit/standing desk for James’ back and hip pain.
- 43:50 – How James sometimes allows himself to have a “bad day” and wallow to help his mental wellbeing.
- 46:50 – Cheryl dives into acceptance and commitment therapy.
- 48:50 – James’ challenges with difficulty rating his pain on a scale of 1-10, and why that inspired him to create an app for tracking symptoms.
- 51:20 – Cheryl and James explain the difficulties of rating pain.
- 53:00 – James elaborating on how he developed his symptom diary app, Chronic Insights, which allows you to draw your symptoms onto an interactive 3-D model.
- 57:00 – James’ shares the impact of having a visual representation of your pain (via his app), and shares the feedback from others who’ve been using the app.
- 1:04:00 – Where you can find James
Full Transcript:
[00:00:00] Cheryl:
[Introductory note]
Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program.
I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more.
You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis. You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Hi, everybody. I am so excited to announce that on Friday, March 26th, I’m going to be offering a free webinar called ‘Three Ways to Manage Stress and Thrive with Chronic Illness’. So, this is where I’m going to be sharing the exact process I use to manage my stress while living with rheumatoid arthritis, and the focus will be on figuring out how to thrive despite our symptoms. There will be a link for how to register in the show notes.
Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness – no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Hi, James. Thank you so much for coming on the Arthritis Life Podcast!
[00:03:13] James:
Hi, Cheryl. Thank you so much. I’m excited.
[00:03:16] Cheryl:
Me too. Can you first just let the audience know where you’re from? ‘Cause I’m sure that the Americans are like, oh, where’s that accent from? And what is your relationship to arthritis?
[00:03:28] James:
So, my name’s James. I’m from the northeast of England, in the UK just on the outskirts of a city called Newcastle Upon Tyne. And I’m a health tech entrepreneur. I’m running my own company called Chronic Insights, which has a symptom diary app on the market. I am 39. I’ve got ankylosing spondylitis. I’m bisexual. I live with my male partner of 22 years. I used to be an IT consultant. I like playing the piano. I like going for walks. I like reading. So, that sums me up in a bit of a nutshell. So, you asked about my relationship with arthritis. So, yeah, I have a condition called ankylosing spondylitis, which is like a lot like rheumatoid arthritis. It has very similar features, but it affects different joints.
So, it’s generally, for me, it’s my spine, my shoulders, my hips, my rib cage, and occasionally other joints as well, like occasionally my knee, my jaw, ankles sometimes. And it affects, you know, it affects me every day. I have pain every day. It’s just a matter of how much pain. It varies a lot. Yeah, it’s constantly up and down. I like to picture my relationship with AS like a story. IIt is a story that I often tell people. So, I just, one day I was living in my house and I, well, I came home to my house to find somebody else had moved in. This big scary monster that I didn’t ask for or didn’t give permission to just wander into my house. But there it is, just eating my food out in my fridge and making a noise and leaving mess everywhere. And I’m kind of scared by this person who’s just barged their way into my house and I can’t make them leave. ‘Cause they’ve got nowhere to go. And they’ll keep me up at night.
And for a long time, this really stressed me out a lot and I had some really tough times with this person. It was just doing my head in. But one day I sat this, person down and, just looked him right in the face and just, for the first time, opened myself up to who is this person? And why are they here? And almost be in the end, I’ve become almost friends with this person. I still don’t really like them. They do make a lot of mess and noise and they’re just not a great person to live with. But actually, I like to see this person that I live with, who I’m getting to get along with quite well now.
[00:07:02] Cheryl:
That’s a beautiful metaphor. I really love that. And just for, since a lot of the audience has rheumatoid arthritis and we call rheumatoid arthritis RA for short, when we say AS on this episode, that’ll be short for ankylosing spondylitis, just for people who might be like, why do they keep saying AS? But yeah, like, that is such a descriptive metaphor for what it’s like when you first get this diagnosis and you’re like, why is this here? How do I make it go away? And then, eventually you realize it’s chronic and you can make peace with it, even though you’re still gonna have feelings that come up of wanting it to go away, right.
[00:07:48] James:
Yeah. I would love somebody to draw this as a cartoon. ‘Cause I can see it in my head as a nice little story, that you could do as a cartoon of what it’s like really. And certainly, what my experience has been over the many years that I’ve lived with AS, ’cause the relationship I’ve had has changed so much over the years.
[00:08:17] Cheryl:
Yeah. Have you ever been exposed to Acceptance and Commitment Therapy? Also known as ACT, which is a, it’s a mindfulness, it’s like mindfulness meets cognitive behavior therapy.
[00:08:29] James:
No, I haven’t. I’ve had some sessions with a counselor and also with a pain psychologist. And they were extremely helpful. One of the best things that I’ve done to help myself manage just living with chronic pain. And, oh, an occupational therapist as well. And we touched on things like cognitive behavioral therapy, and just breathing exercises and just talking things through, so I don’t think I came across that specifically.
[00:09:09] Cheryl:
Yeah. The reason I mention it is that ACT, they use a lot of metaphors. And actually there’s a woman, Louise Gardner, who’s done a lot of, she’s an artist and she’s done a lot of drawings to illustrate concepts from ACT. And one of them is similar to what you’re talking about, but instead of a monster, it talks about a beach ball. And let’s say you’re at the beach and you’re swimming and suddenly this beach ball hits you and you try to — and the beach ball is like a metaphor for uncomfortable thoughts, or maybe uncomfortable sensations, like pain in our case, or the thoughts that arise around pain, right, that this might not get ever get better. I can’t handle it. It’s gonna ruin my life. Why is this happening to me? What did I do wrong? What can I do to make it go away?
And so, she talks about how the beach ball, if you try to push it under the water, it keeps popping back up, right? The beach ball will never be able to be completely submerged. And it’s in this metaphor, the beach bar, every ball, every time you try to throw it away from you, it comes back. But eventually if you stop focusing on it, you can just live alongside this little beach ball. A way that this could be expanded is — let me know if this is wrong for you — but in my mind it’s like the monster of RA or AS, it feels bigger sometimes than smaller other times. And some of that’s under your control. Like, maybe I learned some tools and strategies and now it doesn’t bother me as much. It’s smaller. Or sometimes it’s outta your control. Like, maybe you take a new medication and it just works really, really well and it’s in your control ’cause you chose to take it. But sometimes the disease just has a mind of its own and it can get much bigger or much smaller.
[00:10:52] James:
I love them. Metaphors are just generally are so useful for people to get the head around concepts and to understand things and also to communicate to other people ’cause the reason that we use metaphors and similes so much is just they’re so useful to anchor your experience onto something that somebody else can relate to. So, everybody knows what it would be like to try and submerge a beach ball. You can, you instantly know what that really feels like and what that means. So, yeah, I’m always fascinated by things like the stories and metaphors as a way to just way to communicate better.
[00:11:39] Cheryl:
Yeah. And I’m curious to take a step back in your own journey, what was your diagnosis story like?
[00:11:48] James:
My diagnosis story was pretty unusual in that it was actually very quick and easy, which I’m very grateful for look, looking back ’cause I now know how quite rare that is actually, especially with these sorts of conditions. So, when I was 17, my knee just blew up, swelled up really significantly. It was just out of the blue, just what is this? Just one day I couldn’t get down the stairs. It happened over just the course of a few hours. And I was really lucky that my dad has medical experiences. He’s worked in the NHS or all of his career. And he knew straight away that I should see a rheumatologist, ‘cause that looks like it’s something to do with rheumatology.
In the UK what you generally do when you have any kind of medical issue, if it’s not an emergency, is you go to your general practitioner, your GP, and then, you get a referral onto specialists if necessary. And I was just really lucky enough to just basically go directly to a rheumatologist ’cause we knew, yeah, I need to see one. And he knew who to contact and get me how to get me an appointment straight away. So, I did see someone pretty quickly, who took a blood test and that narrowed it down to, it was, I think it was called seronegative arthritis which they could tell from the blood test, which narrowed it down. And then, I think within — it’s a long time ago, so my memory is a bit sketchy — but I think it was within a few weeks, it was diagnosed with, I think it was initially then it became reactive arthritis.
[00:13:58] Cheryl:
Oh, okay. Yeah.
[00:13:59] James:
Which I think is like a general term for any kind of arthritis which is triggered by some sort of event.
[00:14:06] Cheryl:
How have you managed your condition over the years? I know a lot of us go through different phases.
[00:14:13] James:
My management and my approach to it has changed a lot over the very long time that I’ve had it. Initially, I didn’t manage it very well at all. Because it started, when it first started off the first few years, it really wasn’t a major problem for me. It was a thing that was in the background. It started affecting just my lower back initially. But it was, it was something that I could just ignore and just carry on and just plow through regardless. But it very, just very slowly over the course of years, it just got a little bit worse, and a little bit worse, and a little bit worse.
And because that sort of crept up on me so gradually and slowly, I almost didn’t realize what was happening until I just, I was in a really bad state. I was just trying to sort of power through it. Just brute force. Just I’ve got this life to live. I’ve got, you know, I was going to university. I had this whole, my life in front of me. I didn’t really have specific plan of what I wanted to do, but I know I wanted to be successful and achieve and go to university, get a job that I loved, and all these things. And this back pain was just something that was getting in the way. And it was annoying and it was frustrating and I really wished it would go away. But let’s just carry on. Let’s just try and power through anyway.
[00:15:58] Cheryl:
Did you have any medication management or —?
[00:16:02] James:
Yeah. So, I was using anti-inflammatories. So, the first regular rheumatologist that I started seeing, he put me on anti-inflammatories and it took the worst edge off, but it was certainly still very painful and very stiff. So, I, yeah, I suddenly realized I got to this point where I was really struggling to go to lectures, to just get up in the morning and do my work. And I was really starting to get quite miserable and I just didn’t know what to do. I had no idea what to do. I’m supposed to be doing all these things and it, and this thing was just slowly stopping me from doing those things. And I got really depressed. I got sad and frustrated and angry, just really angry at this thing and just the whole, just the frustration of it.
And it got to a point where I decided I needed to see a counselor. After probably just a few minutes of me explaining to the counselor why I was there and what I was going through, I just burst into tears. ‘Cause all of this frustration and everything just, I didn’t, hadn’t realized, was bottled up in me and just waiting to get out and was causing so much stress. And I think it’s partly because it just slowly, very slowly, crept up on me, little bit by little bit. Something can happen so slowly that you don’t realize it’s happening. Like, it can get dark outside really, really slowly. And so, all of a sudden you realize, oh, it’s pitch dark. When does that happen?
It is that kind of thing. But also, I just, I guess I just didn’t — I wasn’t used to asking for help for things like this. I generally had a good childhood. And just this was the first real adversity, I think, that I had faced as well. So, once that, once I had seen a counselor and once I had realized that I was I really struggling, and I needed help, and I wasn’t coping very well, and I didn’t know what to do, that’s when the next time I saw the rheumatologist, I was probably a lot more honest about how much pain I was really in, how much I was really struggling. And that’s when he said, “Oh, well. We’ve got this other drug option called biologics.” I suspect that I was just hiding it a lot.
[00:18:57] Cheryl:
Yeah. That’s really common for young people, like, they’re in their late teens and early twenties who have this disease. They’re afraid that — they’re afraid of being put on more aggressive medicine or they’re afraid of just admitting how bad it is. Like, one of the phrases I’ve used about myself before is wayward optimism, you know, like, oh, it’s just gonna get better. It’s about to get better. And thinking that, oh, this is just temporary, but sometimes optimism’s not in your favor, right? Because if you got, it’s actually much easier to control your disease aggressively than it is to catch up once your inflammation’s really bad, so.
[00:19:36] James:
I think at some level, by admitting the fact that you’re in a lot of pain, it makes it more real as well. Like, suddenly it’s a reality. Whereas if you just don’t even acknowledge it’s almost, you know, it’s much less scary if you can just pretend that it’s not really there and you can carry on and you can manage yourself; it’s okay, really. But that just, it works for a certain amount of time, and then until it doesn’t. It took me quite a long time to just be comfortable with saying I’m in a lot of pain.
Like, even just saying those words was, it was scary. And I didn’t, you know, it wasn’t a nice thing to say. It’s not a nice thing to say really to anybody. And it took, I think it just took me a while to get used to saying that to people. So, that’s, I guess, another thing that helped is just being better at, I got better at communicating what I really needed. And so, once I started on biologics, that changed my life, really. The first one that I took was one called Adalimumab, or Humira. And that, yeah, that was life changing for me.
[00:21:02] Cheryl:
[Intermission begins]
This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes or by going to www.myarthritislife.net.
[Intermission ends]
[00:21:22] James:
I was told, “Let’s try this thing. And over — well, give it to you over a month or over a couple of months and we’ll have you back. And maybe, by then, it might have started helping me. But don’t, you know, don’t expect anything to happen for several weeks or if at all. ‘Cause for some people, it doesn’t work.” And I remember taking the first injection and the next day, something felt different and I couldn’t quite figure out what it was. And then, I realized I could move my neck in ways that I just, I haven’t moved my neck for a long time. And I had gotten so used to turning with my whole body, not really moving my neck. I would move my whole top of, yeah, my body and my shoulders and, all of a sudden, I could move my head independently. And it was like, that feels really weird. And it’s like, what’s going on? Oh, is that the Humira? And it turned out, yeah, it was. It was actually, for me, it worked incredibly well. Within a few weeks, I basically had no symptoms of AS. It was just amazing.
[00:22:54] Cheryl:
And this is why I do a lot of work on educating patients against medication shaming or just on having a balanced approach. ‘Cause I think so many people are scared of the medicines. Not to say that everyone’s guaranteed to have the same story you have, but the majority of people do have a positive response. It’s just the facts of the science behind it. And, yes, there are side effects and some people have severe side effects, like with any medication. It makes me so sad to think of a lot of people who are, like, in pain unnecessarily because there are so scared of the med. Or did you have any hesitation?
[00:23:29] James:
Yeah. I was obviously going through — it was obviously explained to me, with all drugs that if when you read all the possible side effects, they’re all a bit scary. I was struggling so much that when you are in real need, for me, the balance of the possible risks and the fact that I have to inject myself, the downsides, the potential upsides of it helping me even just a little bit was just, for me, was just a no brainer. It’s like, yes, of course I’m gonna try it. And for me, it turned out to be absolutely the right decision. Just what it gave back to me was just massive. And I think, everybody’s obviously gotta make that their own decision. And I think that’s right. But yeah, for sure, I’d say for anybody who is in the same situation, wondering should I try this or should I try not, just try and be as informed as possible, ask other people who have tried it what their experiences are. Because for me, most people that I’ve asked about it have said similar things that, yeah, it makes a massive difference.
[00:24:53] Cheryl:
So, are you still on Humira or —?
[00:24:56] James:
No, I’m not. So, yeah. That was sort of the middle of the story. Yeah. During the — so for three years, Humira was just amazing. I did the Great North Run twice, which is this half marathon that takes place in Newcastle just down the road. So, I just couldn’t, I couldn’t believe I was doing that. The idea that I was, doing a half marathon twice was just, wow. it was amazing. I was able to really get into my — I was being an IT consultant at the time and enjoying what I was doing. Yeah. I was quite successful.
But then, it started to wear off and over a long period of time, it took a long, long time for it to wear off, but over probably a year or a year and a half, it went from no symptoms to, oh, a little bit of a stiff back there. And then, it started recurring a lot and I knew, yeah, that’s the AS I think coming back. And it just, it gradually got worse and worse. I think I was aware of that this was a possibility and it is a possibility with biologics that eventually they might stop working in some people.
[00:26:36] Cheryl:
Most people. Yeah. It’s that your body creates antibodies to it. So, the part, the same faulty part of your misbehaving, as Dr. Wada said in the recent episode, misbehaving part of your immune system, it’s misguided enough to attack your own joints, but it’s smart enough to figure out how to outsmart the medications eventually.
[00:26:57] James:
So, that happened and that was really hard to take me. That was a — that was a massive blow to me because I had experienced what it was like to just have a completely normal life. And then, I knew kind of when it was coming bac, what it was, and that it was gradually getting worse. And I kind of knew that this is all coming to an end and, yeah, I really struggled with that mentally. Just it was just so frustrating and it was just so — I was just so sad that all these problems were coming back again. And I was just obviously going back to the rheumatologists, and trying to figure out what to do. And the first thing was to try some different biologics and I was able to try, start trying some different ones.
And I think I might have tried two or maybe even three. I can’t remember now. And they didn’t work either, but for each one I had to try them for a long time to really make sure that they definitely didn’t work. ‘Cause we didn’t want to try one for too short a period of time and for it not to fully work. Because maybe it will take up to a couple of months or three months or something for it to actually make a difference. So, I went through a long period of time of trying a couple of different ones and unfortunately they just, for whatever reason, they just didn’t, they didn’t work for me. And I sort of got worse and worse over that period of time. I really, really struggled with that. While I was at work, I was starting to get quite stressed as well.
So, at the time I was being an IT consultant, so it was a lot of meetings, a lot of going to see new customers, traveling. I had a, sometimes I would have team members that I was managing or projects, I was managing some projects as well. And it started to become a real struggle to do that and deal with the chronic pain and the fatigue and the tiredness and the just generally feeling unwell and just the unpredictability of it, not knowing what today is gonna be like, having to cancel meetings at the last minute was the worst thing. Waking up, realizing it’s just not gonna happen today, and then having to write that email or make that phone call to a customer to explain why you’re canceling at the last minute and having to maybe explain what ankylosing spondylitis was again.
[00:30:22] Cheryl:
Yeah. That’s, a whole other topic, you know, choosing whether or not to disclose.
[00:30:28] James:
Yeah. I was fortunate to be working in a company that was just small enough that it kind of had that sort of almost like a, it was like a family. And I never felt like I needed to hide anything. I probably, I probably still did to a certain extent because again, it’s not, it’s something that I’ve struggled with my whole life is try figuring out how do I communicate the fact that I’m in pain all the time without feeling like I’m just, I’m like a broken record telling everybody that I’m in pain a lot and, I don’t know, guilt and unease and anxiety that comes along with that. But generally, my manager was very supportive. The company as a whole was very supportive. They got me a standing desk and a fancy chair that I could use to try and help me. They were very flexible in allowing me to just take time off when I needed to.
It got to a point where I had one really bad year where I was in such just excruciating pain every day that I just couldn’t work at all. I was on two crutches a lot of the time because my ankle swelled up a lot and just my days became going from the bed to the sofa. And then, back to bed again, maybe via the kitchen to get some food. And that was the most exciting thing that would happen to me. ‘Cause even just getting outta bed was probably the most exhausting thing of the whole day. I had to create the system of rolling out of bed in such a way that it minimized the pain in my hips. I would roll onto my face and then try and swing my legs out of the bed. And then, I would end up kneeling down and it would take me several minutes just to get out bed.
[00:32:51] Cheryl:
Were you living alone at the time or was your partner there?
[00:32:54] James:
No, so I’ve been living with my male partner for throughout all of this. And he’s been extremely, extremely supportive and loving and understanding, and I’m so grateful for that ’cause that’s really helped. But a lot of days I want to just get out bed myself and not worry him about it. So, some days, obviously, he would be able to help me. Some days he left for work and I would be on my own sometimes.
That was probably kind of rock bottom moment for me because I had lost, I’d lost my purpose in life, not being able to go to work and do my job. I was just stuck indoors and I couldn’t really do anything other than watch TV. And I, really struggled with that. There were some really, really dark days where I was just miserable and depressed and just, I was just purely existing. Yeah, I was just there. I wasn’t able to do anything. And it was miserable; I hated it. And I started to wonder whether I would ever get back to work again. And mentally that was just the worst year of I’ve ever had with it.
But it was, actually, it was probably at that time that I came across meditation and mindfulness. It was probably a bit of a breakthrough moment. One of the things that I discovered was this audio book called Practicing Mindfulness that’s on Audible. And there was a chapter on specifically around pain and using meditation to help manage and cope with pain and takes you through a couple of exercises. And one of them was this really interesting exercise actually focusing on your pain, and turning your attention towards pain because we spend so much of our time ignoring it and turning ourselves away from the pain, which in itself is quite exhausting and we never really pay attention to it, because it’s this horrible thing that it’s natural to not want to pay attention to the pain.
But it was really, I found this exercise just really interesting because it teaches you to relax and goes through this sort of initial breathing exercise and just listening to your body. And then, what this exercise taught, teaches you to do is focus on your pain and be curious about it. Notice whether it’s really constant or whether it’s actually changing. ‘Cause often, it feels like pain is just constant. It’s there all the time. But I noticed when I really focused on it, wasn’t always what I thought it was. It would just come and go. It would be there, it would be — it would shift and it would change. And just this idea of being curious about it for the first time. I experienced it for years and years, but never really just focused on it and turned my attention to it with curiosity. And the idea was to teach yourself that you can actually live with this sensation. You start by observing the pain and then you try and observe yourself observing the pain.
[00:37:15] Cheryl:
Like you learn to be the observing self, not just the inhabiting self, like inhabiting your body.
[00:37:23] James:
And it’s difficult. And it’s not something that I can do all the time, but it was just that moment of realization that was possible. And I managed it once this one time I managed to see myself — it was almost like an, I hesitate to say out of body experience ’cause that sounds very unreal, and it was a very real experience. I really felt like I could just observe myself as this other, as this entity that I could empathize with and feel sorry for.
And it’s this person experiencing pain. And in that moment, I sort of escaped the pain. I was outside of it, looking into it. Even though I was physically experiencing pain at the time, just this realization that I could separate myself from it was probably like a, it was a sort of a breakthrough moment in my perspective and my appreciation of meditation. And it just, it led to a much more positive mindset, I think. Yeah. So, I think from that sort of rock bottom point, things slowly started getting better. And it was a mixture of the fact that actually I did eventually find another biologic, which started working, which obviously helped a lot.
[00:39:00] Cheryl:
Yeah, no, but the mental piece is so huge too, because the biologics can come and go, right? So, I’m on my third and each one has worked for me, but doesn’t mean the next one’s going to work. So, the mental tools to cope with the pain and the uncertainty is like a skill that will help you no matter what, right. Because you don’t know what’s gonna come up in life. It could be something totally external to your disease, too. So, I’m just, yeah, preaching to the choir here. But I think it’s amazing that you came to this breakthrough all on your own. I had to learn it from two separate therapists over multiple weeks hitting me over the head. ‘Cause I was like, this doesn’t make sense. Why would I wanna feel the pain? I don’t like you. I fought against it really hard. I’m paying you to tell me to focus on my pain. This is so weird.
But I did trust — I had built trust. So, I developed really severe cleithrophobia, which is of being trapped, and I felt trapped in my body. So, when I was having this pain from my stomach and my rheumatoid arthritis, I started panicking. I can’t get out. But instead of it being like claustrophobia where you’re like, I’m in a small space and I can’t get out, I was like, I’m in this body and I can’t get out of this body. Like, I kept imagining, like, can I just transport myself to someone else’s body. I don’t know if you’ve ever had that, but, so yeah, learning how to become the unbodied self or the observing self was huge. But you can’t — it’s like the only way out is through. You can’t circumvent the process of actually connecting to and feeling your pain, which is really scary.
[00:40:41] James:
Yeah. And I think that process is what really started me on the road of accepting the condition, which is something that, you know, I’ve heard a lot from a lot of your other guests. it’s a theme that keeps coming back and it really is, there’s a reason for it. It’s, ’cause it really is the crux of, I think, coping with chronic pain is being able to accept the fact that it’s there and it might not go away. But you can actually live alongside it and be okay with the fact that being able to stop wanting it to be different, stop wanting your life to be other than it is, accepting the fact that it is the way that it is and you didn’t ask for it, but you can still have a life with it. And that whole process has helped me enormously over the years. And it’s that and this toolkit of lots of different things that have developed as well as the acceptance and the meditation. Things like, well, exercise, and somatics is something that I really, I love. It’s like Pilates and yoga, an exercise that you do on the mat.
[00:42:15] Cheryl:
Connecting to your body?
[00:42:17] James:
Yeah, that’s kind of where the similarities end, really. It’s actually a lot different than Pilates and yoga in the — it’s very slow and gentle. The movements, you won’t typically, you won’t get out of breath doing it. You probably won’t even start sweating. It’s all about moving very slowly and very deliberately, and paying attention to how you’re moving your body. And it’s, there’s this whole idea of sensory-motor amnesia, which sounds really bizarre, but once you start learning about what it’s about, I think there’s really something in it. It’s about the fact that especially with a condition like ankylosing spondylitis, we tend to get stuck in certain poses. And sort of we get tense and rigid and I think that actually contributes to the pain in a sort of cyclic way. I feel pain and I tense up, and that tensing up creates more pain, and you get into this vicious spiral.
And the reason I love somatics so much is that it’s something that I can, do even on bad days, because it doesn’t require you to be athletic. And it’s also something that I just find relaxes me a lot. It relaxes my joints. I feel much more — I can do a class, and after the class, I just feel more aligned and loose and everything just feels like it’s, you know, my shoulders are down and relaxed and I just feel great after doing it. And it’s kind of magical in a way, because you’re not really, it doesn’t feel like you’re doing a lot. It’s this sequence of movements and there’s various different movements that seems to allow your muscles just to relax. So, that’s something that I just added to my toolkit recently.
But reclined exercise bike, I’ve got one at home. I love that. ‘Cause it’s, it’s something that I can do even if my back is sore and it really helps my hips, I find. I got this little pedal exercise that it’s just, basically it pedals. You can put it in front of you on the, so in front of the sofa or something like that. So, during that really bad year that I had, it was just a massive flare up and it really affected my hips a lot.. And I found just being able to move my hips just very, very gently while I was sitting on the sofa, just helped ease the pain a little bit. And I like to stand when I’m working at the computer now. I’ve got the standing desk so I can stand when I’m able to, and then sit and then stand. So, I keep changing my posture. Just trying to do one thing every day. One thing that will help me, whether that’s somatics or going for a walk or doing some meditation. I try and just do one thing, even on days that — one thing is actually just allowing myself to have a bad day.
I like to just, I like to allow myself to be really fed up and miserable and just, ugh, I hate this. I actually find it’s cathartic in a way. It’s, yeah, it can be therapeutic and but just recognize the fact that you need this day. I tell my partner, “Look, this is just, I’m gonna have a rubbish day. I’m gonna be miserable today.” Just let him know and just sort of give yourself that day to just be fed up. Just lay around, watch TV, just be miserable, and just wallow in it a little bit. Sort of counterintuitively, actually, I find really it can help my mental wellbeing. I need that because we are going through something that’s really horrible. Allow yourself to feel that, you know, allow yourself to be sorry for yourself.
[00:46:57] Cheryl:
Well, because it’s giving yourself permission to feel your feelings, and I’m a big fan of Glennon Doyle Melton, who is an author of a bunch of great books, including Untamed. But she has this really deceptively simple phrase, which is, “Feelings are for feeling.” Like, we don’t — we’re not just supposed to feel the good, happy feelings. And I know in the US, like, American culture, it’s definitely like we should be happy all the time, have a nice day. And it’s funny ’cause a lot of people will say to me, like, you have a — how do you have a positive attitude or whatnot? And I’m like, well, I don’t try to, I don’t think straight up like positive thinking, saying I’m only gonna focus on the positives. I don’t think that’s productive for long-term chronic illness. It can definitely help get you out of a spiral that’s not helpful, but accepting my feelings makes me actually overall feel happier. But you can’t get there by trying to be happier.
It’s like people have it backwards. I think if you try to be happy, then you’ll be happy. But, or if you — and if you avoid feeling your pain, if you avoid admitting that you’re upset or frustrated that’s gonna make you happy. But actually, it just frustrates you more because you aren’t connecting to your feelings. So, the feelings are like the beach ball and you’re just sitting there hitting the beach ball and trying to make it go down when you’re actually gonna be happy if you just let that beach ball be next to you and say, “That’s gonna be — that’s there. That’s a beach ball. That’s a thought that I’m frustrated. That’s a frustrated thought. That’s a — these are just thoughts that I’m having.”
I’m having the thought that I’m stupid, or — I have that. I actually didn’t even realize how often I had that until I realized I was saying it out loud sometimes. And my son would start, he started modeling it. He’d be like, “Oh, I’m so stupid.” Because I would say something, like, totally in a self-compassionate way, but, “Oh, I’m so stupid. I forgot that,” but then I realized, oh, like, that’s, you know, to me, that’s okay to say. ‘Cause I just, I don’t stick to it. I don’t, or I don’t let that stick to my brain. That’s just a thought, like, “Oh, that was — that was stupid.” Or, “Oh, I’m, I’m worried about this happening.”
It may or may not happen, but that detachment from your thoughts is so crucial. Being able to feel your feelings and then not — they call it, in ACT, it’s called fusion. Being fused to your thoughts or sticking to your thought, versus allowing the thoughts and emotions to just arise. They’re like waves. They just come and go, you know. So, it’s very freeing. It frees up your mind for to focus on other things, like what’s important in your life if you aren’t spending so much time trying to submerge these, quote unquote, ‘bad thoughts’, you know?
[00:49:45] James:
Yeah, I don’t want to come across as sounding like I’ve got it all sorted. I’m honestly, I’m always one little thing away from just, ugh, I’m fed up, throw my toolkit out the window. I have those days where I revert back to my — back right at the start where I don’t know how to handle this and I don’t know what’s going on. And that, that’s okay. I think it, I think it’s important for people to realize that everybody feels, everybody with chronic pain or chronic fatigue, feels like that. Maybe not every day, I still have those days where I’m just completely lost and just questioning everything and I just, I dunno what to do.
[00:50:37] Cheryl:
And that’s part of being human really, you know. I think maybe having a chronic illness makes you have a little bit more those days than the average person. But I wanna make sure, ’cause I wanna talk about all of this like forever, but I wanna make sure we spend some time on your unique creation. I was gonna say like your little baby, the Chronic Insights app. What made you decide to create an app to help, like, a symptom diary or in the US we just call it like a symptom tracker?
[00:51:08] James:
So, a lot of little things. It came out of my own experiences of going to see my rheumatologist. And one of the things that I really hated about going to see my rheumatologist was the questionnaire that I get asked when I go in. And one of the questions is ‘Over the last six months, on a scale of 1 to 10, how has your pain been?’ And I never really knew what to put for that. I just, I have no idea. Do you mean what’s the worse it’s been? What’s the average? What even is the average? I have no idea. Have I had — has the last six months been better than six months before that? I don’t know. I really don’t know. Why are you asking?
And I understand that it’s difficult to produce a questionnaire that captures everything. But that really, that just didn’t sit with me very well. And don’t get me wrong, I love my rheumatologists. I’m lucky enough to, when I had that really bad year, I was referred to a couple of really great doctors. But even though I have a really great relationship with them, when I’m in there and I’m asked, “So, James, how have you been?” My mind kind of goes blank. When you have pain and fatigue every day and then somebody asks you, “How has it been?”, it can be really difficult to even know.
And this became really important when I was trying lots of different biologics and I was trying different anti-inflammatories. And I tried Gabapentin for a while just to see if that might help. And obviously, every time I would come back they would ask, “So, do you think this new drug has helped?” And often I’ve been in a similar situation where I was like, “I don’t know, maybe? I think maybe I’m a little bit better,” but because it’s so up and down, how do I really know?
[00:53:20] Cheryl:
It’s very hard. And there’s so many different kinds of pain, like stiff pain, or hot pain, or stabbing, sharp pain, dull, achy pain, So, I don’t even think it makes — I cannot conceptually wrap my mind around a 1 to 10 scale because there, I could be at an 8 on stiffness that affects my quality of life severely, but it’s only, it’s a 0 on the sharp stabbing pain. It might be 0 on numbness and tingling pain, but the stiffness can make it so I can’t uncurl my fist and I can’t take care of myself and perform my activities of daily living. But so, where do I put that? Do I average it, like, eight, zero, and zero then it’s gonna average to three-and-a-half? It doesn’t even make sense. It doesn’t even represent any of the pain, So, yeah, it’s very imperfect system.
[00:54:14] James:
And always, when you go to see the doctor, I dunno what it is like with you, but for some reason, more often than not, I’m just, I’m having a really good day that day.
[00:54:24] Cheryl:
Oh, yeah. Guaranteed.
[00:54:26] James:
Why, I dunno why that happens, but it seems to. And so, they’re doing the measurements and with ankylosing spondylitis, my rheumatologist likes to do certain measurements, so they’ll measure how much my ribcage can expand when I take a deep breath, and I bend over to touch my toes and they measure the back, how much my back can flex, and a couple of other things. And it’s really, it’s kind of frustrating in a way. ‘Cause I know tomorrow, the numbers will be completely different, and I’m always saying, “I’m having a really good day today. This is probably gonna exaggerate how well I am on average.” But the problem is all they can do is assess you how you are that day.
So, I started to think, well, I should be recording these things while I’m at home, so I can, it’d be so much easier if I can just show, come in to the appointment with a chart that just has my pain, how much it’s been going up and down, and all this other information. And I tried some symptom diary apps and I didn’t, I just didn’t really like any of them. And I was, I’d been in IT, I knew how to program stuff. And this was at the time where I was having that really bad year. And I decided that if I do, if I am ever able to get back to work, I want to change what I do because the whole consultant thing isn’t really, it’s just not compatible with my condition. I needed to do something else.
So, this idea came up in my head that why don’t I create my own symptom diary app that’s better and does everything that I want it to do, and I can work on that when I can, have a lot more flexibility? And so, this became my sort of, I quit my job, and set up a company and started working on it. And I’ve been working on it for a couple of years now. It’s been through various versions and iterations. And I came up with this great idea of having this 3D model. So, in the app, you can rotate this 3D figure and draw onto it with your finger, your arm, your shoulder, down the back, wherever it is, you can actually paint it on. And that just worked really well. And I thought, oh, yeah, this is definitely better. I released it on the Play Store and the App Store for Android and for iOS. You can, download it now. It’s called Chronic Insights.
So, I’m really, really interested to see what people think of it. I’d love people to download it and try it. And just let me know what they think of it, rate it if they like it. On the front page of my website, chronicinsights.com, if you scroll down to the ‘My Story’ section, there’s a couple of images there of — I’ve taken some screenshots of what my symptom diary looks like. And I showed that to my doctor. I showed those images to my doctor. And those images, it basically shows the pain that I have, and I have in which joints, and how severe it is in each joint. And I haven’t created this picture, it’s just, it’s an average of all of the readings that I’ve taken over about a year or so. And it just, it just perfectly describes exactly how I feel in this 3D color model. You can play it as an animation.
So, and I found that was really, really useful for showing other people just who have no idea what chronic pain is all about, or what ankylosing spondylitis is about. If you show them an animation of this figure and that the pain is coming and going and it’s shifting and it’s changing and it’s going red and orange and purple, and people just seem to relate to that. They instantly get it. I think they see it visually. There’s something about seeing it visually. And when my doctor, when I could show my doctor, when I went into my appointment with this chart of my pain, they were like, they were so excited. ‘Cause they’d never seen this before. They’d never seen a patient come in with this chart of their pain.
And it’s like, oh, that’s really, really interesting to them. ‘Cause again, they can instantly see the fact that it’s always there. The fact that it’s constantly up and down. This line is just going up and down, and up and down, and up and down. And I can see whether it’s gradually increasing or gradually getting worse, which helps me figure out what helps and what doesn’t. So, yeah, I’m really glad I decided to do this because, I think it really helps. And I just, I really hope it helps other people as well.
[00:59:51] Cheryl:
And I like that you have the ability to add what I think you call ‘factors’ in it, which are like your behavior, or your elements that are going on in your life. So, you know, maybe you didn’t sleep very well the night before or exercised today. So, then you could start correlating, oh, if I exercise or maybe what I eat, how does that affect the symptoms as well? Because I think, often these questions are asked to us in a really simplistic way, “Do you think this is working or that,” but often in my life at least, there’s so many factors going on. I might have added a new medication, but then also like I was moving. We moved to a new location. And so, then I was, putting more stress on my joints and then I was also trying a different diet. And there’s hardly ever just one variable where everything else is constant. But that’s the ideal for studying the effectiveness of something is don’t change anything else and just change one thing and see what the response is. But in reality, our lives are so much more complex and complicated. We’re rarely just changing one thing,
[01:00:53] James:
Yeah, exactly. Which makes it so much even more difficult to figure out what helps and what doesn’t.
[01:00:59] Cheryl:
People who have been trying to solve this, ‘solve’, quote unquote, the problem of why is healthcare so behind in terms of technology? Like, why aren’t more health facilities utilizing things like apps? But I just think it’s brilliant that you went and you just were like, I’m gonna create what I think we need. What’s been the response?
[01:01:20] James:
Oh, I’ve had some amazing feedback. Just people have been reaching out to me, by email, just to say, “I love the app. It’s brilliant. Finally, an app that I can use.” Which is just, it’s so wonderful to get feedback like that. ‘Cause, yeah, I’ve been working on it a couple of years and it’s got to a point where I’m fortunate enough to have been able to work on it for this long with my condition, working around my conditions. Obviously, it’s taken me a lot longer than it might have taken me if I didn’t have chronic pain or fatigue to do this.
And I’m very fortunate to have been able to make it this far and get to this point, but I’ve gotta decide within the next few months, whether it’s actually — so, you pay, so the 3D part, you pay a subscription to use that part. Other features are free. So, it is kind of a freemium model. I’ve spent a lot of time and money developing this. So, I love being able to work on my own thing now because being able to work around my own time is probably the one of the biggest things that I found that has actually helped my condition. So, yeah, I’m really excited to listen to what people think of it and see whether people think it’s worth paying the subscription for.
[01:02:48] Cheryl:
I can’t wait to try it more. It’s a question I get asked a lot ’cause I’m in touch with a lot of particularly newly diagnosed patients who might not have any experience. So, even just mentally tracking symptoms prior, they say, is there an app or is there like a journal? And there’s physical ones. Some people like pencil and paper; some like an online system. But I think the app is so handy ’cause you always have your phone on you.
[01:03:12] James:
Yeah. I also tried it on paper and pencil as well, but it was never — I never had it when I need it. There was one or two times where I just, it was somewhere else and I was in pain. I couldn’t get up. So, yeah, the app made a lot of sense.
[01:03:29] Cheryl:
Well, that’s really exciting. I hope other people listening have a chance to download it and try it out as well. And where can people — I’m gonna put all your links in the show notes — but where can people find you on social media or website?
[01:03:42] James:
I’m on Instagram at @ChronicInsights and there’s my, you can get in contact by email. I like email because I find it encourages longer form conversations, which I just like. That’s james@chronicinsights.com. And if it, if I can ask anybody who is listening who’s interested in trying it, if you like it, please do give me a review, on the App store. ‘Cause that really does help push it up in people’s search results. ‘Cause it’s just been released. So, I’m kind of starting at the bottom here. So, leave a review, leave a star rating, and let me know if there’s anything that’s wrong with it, if there’s anything missing, what you would like to see in it. ‘Cause for sure it won’t be perfect. Everybody’s got different needs, and just let me know what I can do to improve it. That would really help a lot.
[01:04:47] Cheryl:
I really appreciate your honesty and there’s a lot of heavy things you’ve experienced, and I hope it will be really inspirational to the audience to see that you can come out the other side of that rock bottom, so I’m really, grateful. So, thank you again.
[01:05:06] James:
Thank you, Cheryl.
[Ending note]
Thank you so much for listening to another episode of the Arthritis Life Podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.
Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the pre-recorded course on your own, or you can take the course along with a support group. Learn more at the link in my show notes, or you can always go to www.myarthritislife.net. That’s life.net.
And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone who might benefit from it. I also wanted to remind you that you can find full transcripts, videos, and detailed show notes with hyperlinks for each episode on my website, www.myarthritislife.net. If you have any ideas for future episodes, or if you want to share your story or wisdom on the podcast. Just shoot me an email at info@myarthritislife.net. I can’t wait to hear from you.
