I hated PE with a passion. Like you, the competitive nature wasn't something I was ever drawn to, and that always started in the changing rooms before the actual exercise had even started. The bleep test was almost as feared as swimming lessons. PE was the only class that I actually argued with the teacher about, and flat out refused to do high jump. It was so out of character for me (being quiet and shy), that I think it shocked her into silence.
I definitely think something shifted for me, too, when I started to see it as movement instead of exercise. I always loved Yoga, and have had times when I've done it a lot. Unfortunately I didn't ever understand the impact of my hypermobility though, and in the last 10 years the impact of A.S. has also changed the way I practise yoga.
I'm so glad you've managed to shift the meaning it has for you, and embrace movement that works with you, not against you.
Thanks Ruth- wow our experiences growing up sound so similar. I wouldn't say boo to a goose as they say to anyone, but in PE I was always quite stubborn with what I would do and wouldn't do! I too hated anything to do with jumping, but I enjoyed it when they put a one off yoga session on. I wish I could do more yoga but there are so many poses that hurt due to the AS these days. It's taken a while to figure out which ones I can sustainably do and which ones I can't. (That must be even trickier with your hypermobility). And it took me even longer to realise that yoga is so much more than just the 'poses'.
Your neurosomatic flow work really intrigues me. The more I read up about it, the more it makes perfect sense with linking up both body and mind! x
Hi Amanda! I didn’t get picked at sports at school either, although I was pretty good at track and field, and a fast runner. I wasn’t cool enough for the popular girls! As for now, after being diagnosed with ibd and more recently with fibromyalgia (yep, which makes sense to me), I know why massage hurts, and why I randomly get weird aches in weird places, flares that come and go. I’ve always had a tendency to go extreme in my workouts, and of course end up hurting myself, a bit like you! Like last weekend, a week ago, my parents had gone home and I wanted to walk. So I overwalked Saturday and Sunday and my right bum cheek (!) literally has seized up and I had to have physio! It still hurts so I can’t go hiking with my friends this week! I’m silly like that, and find it hard to pace myself. Even at 63! Thank you for the great links, I look forward to having a closer look. Do you know Jennie DiBon, or something like that? Zebra club. Gentle workouts for people with different bodies, like us! A lot of great information! Lots of love xx
Thanks Cesca! I will check out those things that you suggested.
It's so tricky to get the balance right isn't it? Especially with all the other ailments we have. My head says one thing and my body makes it very clear that it can't do that. Like you, I just want to go walk and hike in nature for ages, but then my hips and back seize up...
But then it varies, some days I can do more than others, and then with fatigue, I won't always know if I've pushed myself too far until days later. It can get so confusing- It's like some cryptic puzzle I will never figure out! Hopefully we will figure it out one day :) x
So interesting! It is fascinating what we’ve come to know and understand as exercise in the western world.
I had similar experiences around exercise in school, I wasn’t typically good at any of it - especially running. It took me years to figure out no one teaches you the how! You either have to be a natural at it or you’re an outcast.
I eventually learnt when I was in my early 20’s - ran a 10k then later a couple of half marathons. I used to do a lot of body classes, hit/aerobic. Boot camp etc.
In the end and at my worst, any form of movement triggered attack and I couldn’t even do aqua fit with all the old people. I had to completely reframe exercise to movement.
Though I didn’t receive any help with this in the way you might typically hope or expect it, I did receive the message “yoga for migraine. Yoga for anxiety. Yoga. Yoga. Yoga.” So that in the end I was like “ok ok I’ll start yoga”😒
It’s unlikely what we’ve come to expect yoga to be though and i often think if people saw what I do they’d think I weren’t doing a right lot.
A few in and I trained to be a yoga teacher! But only because I had to set a goal so big that I would actually get my ass to the class every week.
And now I’ve created Free To Be Me ! So I’d love to know, with your experience of exercise and movement now I understand it - how did you find Free to be Me last month? What did you take away from it? And how did you feel after?
I loved 'Free to be Me'! What I liked about it is the community feel, as I do so much exercise/movement by myself it can get a bit lonely, so much sport and exercises are centred around teams or around people (in gyms/classes) etc, and that's the bit I often miss out one, so it's nice to have some company in your class. It's also nice having you as a guide who understands what it's like to have a chronic illness and/or fatigue etc. I know that you won't push us or make us feel bad about not being able to do everything on high pain days. ALSO, I liked that you incorporated the breath and there was plenty of time to relax into the session- I often find in 'normal' exercise classes that I would arrive and my head was all over the place and it didn't have a chance to catch up or relax with the movements, but in your class there was space to do that and I felt more in tune with body/mind, without sounding too hippy! I look forward to the next one x
This is really great to hear 🙏 bringing in the community, connecting to our breath, guiding those of us who live with chronic illness so that we can tune into what our mind and body is trying to show us - all whilst we give our body’s they need to heal and recover; deep relaxation - is exactly my intention.
What I am loving the most about Free To Be Me is that even though it’s in its early stages of launch, it’s aligning true to every element of intention I’ve set for it and could hope for. And I’m only just getting going with it but already, I can tell it’s something special and unique💛✨
I don’t suppose you’re on linked in at all? The reason I ask is because it would be great to have exactly what you’ve shared there copied and pasted into the testimonials section.
I loved this. It was basically my story but I dropped out of ballet 🩰 before the performance and never went back!
I also have the very same issue with exercise, it can be a massive pain trigger. Or I feel faint when my heart rate increases. Or I feel nausea and want to vomit. Or it can trigger a full flare that lasts over a week and my legs feel full of lead.
I too have reframed to movement. I couldn’t put a wash in the washing machine, put clothes on a line or stand up to even cook scrambled eggs at my worse. So if I can do those I’m moving. Cleaning is a proper full on work out and can’t do it every week but I try and do little bits, sometimes telling myself I’m killing two birds with one stone 💚
Ha we're all just out there living the same life aren't we! It sounds like exercise has been such a minefield for us all. Which feels ironic seeing as doctors bang on about how important exercise is to be healthy, yet you need to be 'healthy' or well enough to be able to do it in the first place! Chicken or the egg situation 😆
Argh cleaning is really hard for me too. I just can't do things like clean the bathtub anymore, man that hurts the lower back. And I do the same, just try and break it up into mini tasks and spread it out over the weeks. It's hard though, the perfectionist in me wants it all immaculate straight away 😅 x
We are in a weird parallel way. I was actually reminiscing with a friend about our pe teacher and how awful it was, she said I ran like I had an orange up my bum. I never really understood what that means but it’s stuck with me and everytime
I run, which is rarely now, I think about that orange 🍊😆 I mean maybe it’s sexy? Maybe it’s a Sevillana orange haha.
Then I tried Joe Wicks during the pandemic, he nearly killed me and I was only planking or something. I went up to the terrace and was back down in minutes crying ‘I don’t like Joe Wicks he hurts’ and my husband had no idea who Joe wicks was or what had gone on 😆
I do the same! I do little by little. I can’t do the whole house anymore. And often what I’d like and what energy I have isn’t aligned.
My mother-in-law has a sponge on like a mop pole to do her bath, I thought that was an ingenious idea to help with backpain. She said she’s not seen one since but I was thinking that even a sponge style mop for the floor could work… I’ve only just got a bath to clean (I love long soaks for them achy bones) so I’ll see what I come up with!
Hahaha I can just imagine your husband ready to fight whoever this mystery Joe guy was 😂 I tried one of his 10 minute hiit workouts a few years back and it nearly killed me too. That was actually the moment I knew something was really going weird in my body because 2 hours after doing the workout I was so weak and dizzy and it felt like all the power in each of my muscles completely vanished from my body, weird sensation. Damn you Joe lol 😆
And omg that mop idea for the bathtub is genius!! I'm literally going to try that today, because that's how exciting my life has become, bath mopping on a Friday night 🥳👍 x
Hahaha 🤣 I bet he was thinking Joe isn’t a Spanish name and how did he get on the terrace.
I got a stabbing pain that lasted days afterwards. And I felt sick and faint. Gosh he’s so mean that Joe! I suppose though he also showed you something wasn’t quite right… But then again, he could’ve just told you instead of putting you through such unpleasant feels.
Hahahaha I’ll be crocheting 🧶 a scarf. You mop away 🤣 of if my 20 year old self could see me now. She’d be glad she did all the partying for the future granny before my time me 😆
I always think that too! I used to feel guilty that I took a 2 year gap before uni to go travelling, how indulgent of me 😌, but now I'm blumin glad I did because now I can't walk down my stairs without getting tired, let alone travel half way around the globe with a rucksack the size of a small horse on my back 😆 I'm fully embracing my granny era now though. A good book and a blanket is all I need (as well as a good mop now apparently). Enjoy your crocheting ☺️ x
You have just described my life journey, more or less exactly! Funnily enough I am writing a piece on this theme myself at the moment. Learning to work with, rather than against my body has been key for me in navigating life with an autoimmune diagnosis. And learning to understand the fatigue as part of the dorsal vagal branch of the nervous system has helped enormously too. Thanks for sharing you story Amanda, I feel so seen (especially thinking back to those memories of PE classes!)
I look forward to reading your article! I find it so interesting how people learn to work with their body with autoimmune disorders, as that has also been a huuuge factor for me too. As soon as I started working on calming my nervous system, I was amazed at how much more energy I had. I know it's only part of the puzzle and I still have big dips in my energy levels, but not as frequently! Thanks for your comment 🥰 x
It was a hard lesson for me to learn. Since age 6 I have been cycling, not as a sport or fitness, but as a means of transport. I've cycled every place we lived, to uni, to work, to shop, to transport (kids and goods) and also on holidays. We have cycled across the Alps, along various European rivers and shores and more for weeks at a time. Our retirement plan was to just cycle out into the world with panniers packed and see where it takes us.
One of my hardest memories is the day I sat in my car waiting for the lights to change and this woman, my age group, my built etc., cycled across with all her energy and no care in the world, while I could not make it up the stairs. I sobbed my heart out.
A lot has happened since, including a sturdy e-bike, much learning about pacing and keeping the distances short-ish, including days of rest and comfort. The first day I could commute to work on this e-bike was a celebration for me. I know we will not head off for any long distance trips again but taking off for even a half hour is my go-to therapy session.
Over the years and also during longer hospital/rehabilition stays, I have been fortunate to meet skilled physiotherapists who pointed out various fitness/movement regimens and how to incorporate these and also, what to avoid when things are not so good. They helped me to include exercises to keep muscle strength and flexibility. At my worst exhaustion stage, I found Tai Chi and Shiatsu very helpful. I also had to learn that I am not good in a gym (too much competition and how do you switch that off?) or in a group. The latter simply because there are days when I cannot join and you never get your money back for the days you missed.
Now I follow a couple of exercise programs online, one from a local rheumatology clinic and several others that are not too demanding but still cover the basics. I can set the day and time myself. This I enjoy greatly and look forward to almost every day.
Thank you so much Sabine for your insights. The moment of realisation you describe sounds so tough 😔 I've certainly had a few of those moments in the last few years. When the pain was getting to its highest, I was actually in a practical horticulture course which ran every Saturday. I hated the fact that I often couldn't keep up with everyone, I was always the last to finish digging or couldn't finish a task like weeding or planting bulbs because it hurt to kneel or bend. Everyone had to help me out, I felt so embarrassed. It's hard to give up on dreams and visions of a life you thought you would have.
But I love how you have found new ways of being. It sounds like you have been super proactive in doing everything you can to help yourself and seek out help needed which I really admire ☺️ x
I think for a long time I was actually probably doing more damage than good with yoga, as everything was over-extending. I definitely have to avoid back-bends nowadays due to the A.S. which I find a bit sad, as always enjoyed the feeling of that. I've lost a lot of flexibility in that area.
I don't know if you signed up for the free class I did, but if you didn't, I can send you the recording if you'd like 💜 I'm fascinated by what I've learned in NSF, especially how it can potentially be used for people who can't move enough to use poi or other props. But it's also encouraged me to dance and move to my own pace, which has been great for my body.
Movement, not exercise - yesss!!
I hated PE with a passion. Like you, the competitive nature wasn't something I was ever drawn to, and that always started in the changing rooms before the actual exercise had even started. The bleep test was almost as feared as swimming lessons. PE was the only class that I actually argued with the teacher about, and flat out refused to do high jump. It was so out of character for me (being quiet and shy), that I think it shocked her into silence.
I definitely think something shifted for me, too, when I started to see it as movement instead of exercise. I always loved Yoga, and have had times when I've done it a lot. Unfortunately I didn't ever understand the impact of my hypermobility though, and in the last 10 years the impact of A.S. has also changed the way I practise yoga.
I'm so glad you've managed to shift the meaning it has for you, and embrace movement that works with you, not against you.
Thanks Ruth- wow our experiences growing up sound so similar. I wouldn't say boo to a goose as they say to anyone, but in PE I was always quite stubborn with what I would do and wouldn't do! I too hated anything to do with jumping, but I enjoyed it when they put a one off yoga session on. I wish I could do more yoga but there are so many poses that hurt due to the AS these days. It's taken a while to figure out which ones I can sustainably do and which ones I can't. (That must be even trickier with your hypermobility). And it took me even longer to realise that yoga is so much more than just the 'poses'.
Your neurosomatic flow work really intrigues me. The more I read up about it, the more it makes perfect sense with linking up both body and mind! x
Hi Amanda! I didn’t get picked at sports at school either, although I was pretty good at track and field, and a fast runner. I wasn’t cool enough for the popular girls! As for now, after being diagnosed with ibd and more recently with fibromyalgia (yep, which makes sense to me), I know why massage hurts, and why I randomly get weird aches in weird places, flares that come and go. I’ve always had a tendency to go extreme in my workouts, and of course end up hurting myself, a bit like you! Like last weekend, a week ago, my parents had gone home and I wanted to walk. So I overwalked Saturday and Sunday and my right bum cheek (!) literally has seized up and I had to have physio! It still hurts so I can’t go hiking with my friends this week! I’m silly like that, and find it hard to pace myself. Even at 63! Thank you for the great links, I look forward to having a closer look. Do you know Jennie DiBon, or something like that? Zebra club. Gentle workouts for people with different bodies, like us! A lot of great information! Lots of love xx
Thanks Cesca! I will check out those things that you suggested.
It's so tricky to get the balance right isn't it? Especially with all the other ailments we have. My head says one thing and my body makes it very clear that it can't do that. Like you, I just want to go walk and hike in nature for ages, but then my hips and back seize up...
But then it varies, some days I can do more than others, and then with fatigue, I won't always know if I've pushed myself too far until days later. It can get so confusing- It's like some cryptic puzzle I will never figure out! Hopefully we will figure it out one day :) x
So interesting! It is fascinating what we’ve come to know and understand as exercise in the western world.
I had similar experiences around exercise in school, I wasn’t typically good at any of it - especially running. It took me years to figure out no one teaches you the how! You either have to be a natural at it or you’re an outcast.
I eventually learnt when I was in my early 20’s - ran a 10k then later a couple of half marathons. I used to do a lot of body classes, hit/aerobic. Boot camp etc.
In the end and at my worst, any form of movement triggered attack and I couldn’t even do aqua fit with all the old people. I had to completely reframe exercise to movement.
Though I didn’t receive any help with this in the way you might typically hope or expect it, I did receive the message “yoga for migraine. Yoga for anxiety. Yoga. Yoga. Yoga.” So that in the end I was like “ok ok I’ll start yoga”😒
It’s unlikely what we’ve come to expect yoga to be though and i often think if people saw what I do they’d think I weren’t doing a right lot.
A few in and I trained to be a yoga teacher! But only because I had to set a goal so big that I would actually get my ass to the class every week.
And now I’ve created Free To Be Me ! So I’d love to know, with your experience of exercise and movement now I understand it - how did you find Free to be Me last month? What did you take away from it? And how did you feel after?
I loved 'Free to be Me'! What I liked about it is the community feel, as I do so much exercise/movement by myself it can get a bit lonely, so much sport and exercises are centred around teams or around people (in gyms/classes) etc, and that's the bit I often miss out one, so it's nice to have some company in your class. It's also nice having you as a guide who understands what it's like to have a chronic illness and/or fatigue etc. I know that you won't push us or make us feel bad about not being able to do everything on high pain days. ALSO, I liked that you incorporated the breath and there was plenty of time to relax into the session- I often find in 'normal' exercise classes that I would arrive and my head was all over the place and it didn't have a chance to catch up or relax with the movements, but in your class there was space to do that and I felt more in tune with body/mind, without sounding too hippy! I look forward to the next one x
This is really great to hear 🙏 bringing in the community, connecting to our breath, guiding those of us who live with chronic illness so that we can tune into what our mind and body is trying to show us - all whilst we give our body’s they need to heal and recover; deep relaxation - is exactly my intention.
What I am loving the most about Free To Be Me is that even though it’s in its early stages of launch, it’s aligning true to every element of intention I’ve set for it and could hope for. And I’m only just getting going with it but already, I can tell it’s something special and unique💛✨
I don’t suppose you’re on linked in at all? The reason I ask is because it would be great to have exactly what you’ve shared there copied and pasted into the testimonials section.
I think I did make a profile a while ago 🤔 do you want to send me a link in chat and I can see if I can leave a comment? x
Great, what’s your full name on there?
It should be Amanda Gibson but I've just tried logging in and it's blocked me 🤔 god knows why. I'll try again tomorrow 😅 x
You might have to connect with me if you don’t mind as it’s such a popular name, I can’t find you🙃
I loved this. It was basically my story but I dropped out of ballet 🩰 before the performance and never went back!
I also have the very same issue with exercise, it can be a massive pain trigger. Or I feel faint when my heart rate increases. Or I feel nausea and want to vomit. Or it can trigger a full flare that lasts over a week and my legs feel full of lead.
I too have reframed to movement. I couldn’t put a wash in the washing machine, put clothes on a line or stand up to even cook scrambled eggs at my worse. So if I can do those I’m moving. Cleaning is a proper full on work out and can’t do it every week but I try and do little bits, sometimes telling myself I’m killing two birds with one stone 💚
Ha we're all just out there living the same life aren't we! It sounds like exercise has been such a minefield for us all. Which feels ironic seeing as doctors bang on about how important exercise is to be healthy, yet you need to be 'healthy' or well enough to be able to do it in the first place! Chicken or the egg situation 😆
Argh cleaning is really hard for me too. I just can't do things like clean the bathtub anymore, man that hurts the lower back. And I do the same, just try and break it up into mini tasks and spread it out over the weeks. It's hard though, the perfectionist in me wants it all immaculate straight away 😅 x
We are in a weird parallel way. I was actually reminiscing with a friend about our pe teacher and how awful it was, she said I ran like I had an orange up my bum. I never really understood what that means but it’s stuck with me and everytime
I run, which is rarely now, I think about that orange 🍊😆 I mean maybe it’s sexy? Maybe it’s a Sevillana orange haha.
Then I tried Joe Wicks during the pandemic, he nearly killed me and I was only planking or something. I went up to the terrace and was back down in minutes crying ‘I don’t like Joe Wicks he hurts’ and my husband had no idea who Joe wicks was or what had gone on 😆
I do the same! I do little by little. I can’t do the whole house anymore. And often what I’d like and what energy I have isn’t aligned.
My mother-in-law has a sponge on like a mop pole to do her bath, I thought that was an ingenious idea to help with backpain. She said she’s not seen one since but I was thinking that even a sponge style mop for the floor could work… I’ve only just got a bath to clean (I love long soaks for them achy bones) so I’ll see what I come up with!
Hahaha I can just imagine your husband ready to fight whoever this mystery Joe guy was 😂 I tried one of his 10 minute hiit workouts a few years back and it nearly killed me too. That was actually the moment I knew something was really going weird in my body because 2 hours after doing the workout I was so weak and dizzy and it felt like all the power in each of my muscles completely vanished from my body, weird sensation. Damn you Joe lol 😆
And omg that mop idea for the bathtub is genius!! I'm literally going to try that today, because that's how exciting my life has become, bath mopping on a Friday night 🥳👍 x
Hahaha 🤣 I bet he was thinking Joe isn’t a Spanish name and how did he get on the terrace.
I got a stabbing pain that lasted days afterwards. And I felt sick and faint. Gosh he’s so mean that Joe! I suppose though he also showed you something wasn’t quite right… But then again, he could’ve just told you instead of putting you through such unpleasant feels.
Hahahaha I’ll be crocheting 🧶 a scarf. You mop away 🤣 of if my 20 year old self could see me now. She’d be glad she did all the partying for the future granny before my time me 😆
I always think that too! I used to feel guilty that I took a 2 year gap before uni to go travelling, how indulgent of me 😌, but now I'm blumin glad I did because now I can't walk down my stairs without getting tired, let alone travel half way around the globe with a rucksack the size of a small horse on my back 😆 I'm fully embracing my granny era now though. A good book and a blanket is all I need (as well as a good mop now apparently). Enjoy your crocheting ☺️ x
Absolutely, I wish I’d done more travelling but I think I’ll always think that and the monies have always been what’s limited it 🙈😆
Hello granny era, I’ve just brought a duvet down to the sofa to upgrade my granny Saturday sofa experience. Ooo yeah! 😆💚
You have just described my life journey, more or less exactly! Funnily enough I am writing a piece on this theme myself at the moment. Learning to work with, rather than against my body has been key for me in navigating life with an autoimmune diagnosis. And learning to understand the fatigue as part of the dorsal vagal branch of the nervous system has helped enormously too. Thanks for sharing you story Amanda, I feel so seen (especially thinking back to those memories of PE classes!)
I look forward to reading your article! I find it so interesting how people learn to work with their body with autoimmune disorders, as that has also been a huuuge factor for me too. As soon as I started working on calming my nervous system, I was amazed at how much more energy I had. I know it's only part of the puzzle and I still have big dips in my energy levels, but not as frequently! Thanks for your comment 🥰 x
It was a hard lesson for me to learn. Since age 6 I have been cycling, not as a sport or fitness, but as a means of transport. I've cycled every place we lived, to uni, to work, to shop, to transport (kids and goods) and also on holidays. We have cycled across the Alps, along various European rivers and shores and more for weeks at a time. Our retirement plan was to just cycle out into the world with panniers packed and see where it takes us.
One of my hardest memories is the day I sat in my car waiting for the lights to change and this woman, my age group, my built etc., cycled across with all her energy and no care in the world, while I could not make it up the stairs. I sobbed my heart out.
A lot has happened since, including a sturdy e-bike, much learning about pacing and keeping the distances short-ish, including days of rest and comfort. The first day I could commute to work on this e-bike was a celebration for me. I know we will not head off for any long distance trips again but taking off for even a half hour is my go-to therapy session.
Over the years and also during longer hospital/rehabilition stays, I have been fortunate to meet skilled physiotherapists who pointed out various fitness/movement regimens and how to incorporate these and also, what to avoid when things are not so good. They helped me to include exercises to keep muscle strength and flexibility. At my worst exhaustion stage, I found Tai Chi and Shiatsu very helpful. I also had to learn that I am not good in a gym (too much competition and how do you switch that off?) or in a group. The latter simply because there are days when I cannot join and you never get your money back for the days you missed.
Now I follow a couple of exercise programs online, one from a local rheumatology clinic and several others that are not too demanding but still cover the basics. I can set the day and time myself. This I enjoy greatly and look forward to almost every day.
Thank you so much Sabine for your insights. The moment of realisation you describe sounds so tough 😔 I've certainly had a few of those moments in the last few years. When the pain was getting to its highest, I was actually in a practical horticulture course which ran every Saturday. I hated the fact that I often couldn't keep up with everyone, I was always the last to finish digging or couldn't finish a task like weeding or planting bulbs because it hurt to kneel or bend. Everyone had to help me out, I felt so embarrassed. It's hard to give up on dreams and visions of a life you thought you would have.
But I love how you have found new ways of being. It sounds like you have been super proactive in doing everything you can to help yourself and seek out help needed which I really admire ☺️ x
I think for a long time I was actually probably doing more damage than good with yoga, as everything was over-extending. I definitely have to avoid back-bends nowadays due to the A.S. which I find a bit sad, as always enjoyed the feeling of that. I've lost a lot of flexibility in that area.
I don't know if you signed up for the free class I did, but if you didn't, I can send you the recording if you'd like 💜 I'm fascinated by what I've learned in NSF, especially how it can potentially be used for people who can't move enough to use poi or other props. But it's also encouraged me to dance and move to my own pace, which has been great for my body.