I really loved this conversation and the ideas around rest. I really do need to rest and find that difficult but often when I am lying down the pain can be so much worse. So now I can explore what other things might be restful for me without lying there in agony trying to rest.
That's exactly how I've felt. Lying there itching, or with my legs throbbing, thinking 'how is this helping'???? Sometimes it can just be the lightest distraction, gentle movement (I've just started doing 5-10 mins Tai Chi a day), or when I have no brain capacity for writing, something like a painting by numbers kit. Sounds a bit bonkers, but I absolutely love these. I get lost, and I forget the pain. It is mindful in its way without being 'still'. I hope this gives you some ideas. You are NOT alone xx
I loved your conversation Emma and theme of finding and honouring your own way of dealing with your health challenges 😊
In terms of my wellness practices, I think a big (ongoing) learning for me is around how to effort less, while still doing the things that are important to me, like socialising or travelling. To show up, but to show up with a calmer, more regulated nervous system. It makes all the difference when I can manage it. For many years I thought I had to step back to the sidelines of life in order to be well, but I'm beginning to learn how to stay well in the midst of it all. It's a delicate balance...
That's a really interesting perspective and so true. Like you I like to be in the midst, not on the sidelines. 'How to effort less' - that will stay with me! I think that is really where I'm at - so I want to be at the "thing" but perhaps need to consider how I get there, or for how long in order that when I'm there I can show up in the way that is right for me. It's ongoing as you say!! We find our way.. xxx
Your conversation with Rachel has deeply inspired me to write about the struggle in slowing down. A reader has asked me to write about rest before - when to do it, what to do, how do you know? But the words haven’t yet flowed, since your podcast they’re coming and I’m feeling more ready to tackle the subject. (Initially announcing my challenge with it to my audience the other year had me feeling sick to the stomach).
I’d like to relisten to mine and write on the reflections too (thanks again for the inspo).
I’m 6 years in (to waking up to disability and choosing the path to wellness), my day to day is one long wellness practice. The first 4 years felt like a 24/7 job (but so was disability by illness). 4 years in something flipped and now it’s become my way of life. (Though I am still one massive screen addict, nothing else remains the same)
I’ve had enormous pressure on myself like anyone else, the incessant beating myself up internally - and berating myself constantly (eventually linking this to the aftermath of the physical pain where I would feel like I’d been beat up from the inside out all the way around my head in recovery from each attack). Though this programming was still very much there, operating away, running various aspects of the show - when it came to wellness practices, I learned to let my body take the reigns (best I could) and made changes as guided by my body, in an intuitive way (which combined with research, insight, knowledge, understanding etc - I guess all from an empowered place).
It’s been a long ass road! I’m on a new path now (of ease and release) and as wonderful as this is, it’s damn tricky to stay on.
It is a tricky path indeed, but also one that I think changes, and that's ok. I think you've hit the nail on the head with 'intuition'. We are actually pretty good at knowing what we need for ourselves. When people nag at me 'why are you writing?', 'why don't you rest?', they don't understand that in that moment writing is rest. You have been on such a long journey my friend, and I can't wait to read your words on slowing down. There is always another way. Much love to you xx
I’m writing it now because my online yoga session has been put back. It is bringing up an enormous amount of grief for me. No wonder I haven’t been able to write this piece yet!
So much emotion - and, as you know, the one wellness practice I struggle with is crying.
I’ve known for a year that there is a massive uncontrollable, probably lasting hours, crying sesh in me to come up and out and I’m now pretty certain it’s linked to the grief of 2018.
Latterly, the insight I missed which has caused me immense pain for a further 4 years than it would have done if I’d realised it at the time. This has turned into part 2 of the blog and it looks like there is going to be a 3rd part!
For now though, it’s become all too much and I need to go for a walk before yoga x
Oh honey, take it slow (the irony of me saying this is not lost on me!!). Take your time. Step away and come back as you need. At some point the words, and I’m sure the tears, will flow ❤️❤️❤️❤️
This is SO interesting Emma. We've come away in the van much to the family's horror, who are shouting at me that I need to rest! But my mind spiral downwards into despair if I just sit around. (I've just had a biopsy in a delicate place and after the death of my mother I'm knocked for six). We roamed an Iron Age reconstruction site at a very slow pace and then I slept all afternoon but so much better than just staying at home. Will listen to your interview later today
That's exactly it Sue - I am always being told to 'stop' or 'slow down', but stopping in that sense is not good for me. Trust your intuition. Being in your van, in your happy place, with the person that makes you feel safe. I imagine that will feed your soul and keep your mind just the right side of the spiral. I'm so sorry for everything you're going through right now, but heartened that you have places you can go to and rest whilst on the move. Much love, say hi to Alnwick for me xx
Thanks Emma. Glad you’re re-sharing here. I have had it explained by my healthcare team that trying to rest in frustration is not resting. Sometimes I do the brain work in bed, sometimes I do the walk and accept that there will be no ‘brain spoons’ today. Some part of me is resting either way. Life works best if I pace between types of load, so I don’t overuse one type of (metaphorical) muscle. Some days you have to choose between legs and brains, and some days the only way is complete rest and I’m not given a choice, but then there are occasional days where I can do almost what I could in The Before. Its a wild ride and good that we can acknowledge its different for each of us, and on different days.
Yes to this!!! 'Trying to rest in frustration is not resting' is EXACTLY it. Like you, I need to pace between the different types of load. Writing without speaking or engaging can be extremely restful for me. Sometimes I need to put that down and sleep, sometimes float in the water, sometimes gently connect with others. There are also the complete rest days which I now surrender to without the guilt although I do still carry a frustration around 'lost time'...I'm working on that. A wild ride indeed. Much love my friend x
I do have a good team, Amber, and carefully chosen for ME/CFS knowledge and some ‘lived experience’. It helps that we have universal basic health care in Australia & I live in the inner city so there are doctors & other experts available within reach.
I’m so glad to hear that Michelle 🙏🩵 I’d still come and feed your cat on days that it’s needed if I lived near. We need all the support we can get and if there’s anything I’m learning it’s that a full team is required.
Thank you Amber. You are 100% correct, we do need all the support we can get. And pulsed support would be amazing. Most of the time i jog along pretty well, certainly able to feed my beloved cats, but just the other day i phoned a friend because a bad migraine meant I technically could get out of bed but really really didn’t want to as it would make the headache worse.
I really loved this conversation and the ideas around rest. I really do need to rest and find that difficult but often when I am lying down the pain can be so much worse. So now I can explore what other things might be restful for me without lying there in agony trying to rest.
That's exactly how I've felt. Lying there itching, or with my legs throbbing, thinking 'how is this helping'???? Sometimes it can just be the lightest distraction, gentle movement (I've just started doing 5-10 mins Tai Chi a day), or when I have no brain capacity for writing, something like a painting by numbers kit. Sounds a bit bonkers, but I absolutely love these. I get lost, and I forget the pain. It is mindful in its way without being 'still'. I hope this gives you some ideas. You are NOT alone xx
Great ideas thank you! So many people have recommended T'ai Chi and I forget I can just do 5 minutes... it doesn't have to be a whole class 🙄
I loved your conversation Emma and theme of finding and honouring your own way of dealing with your health challenges 😊
In terms of my wellness practices, I think a big (ongoing) learning for me is around how to effort less, while still doing the things that are important to me, like socialising or travelling. To show up, but to show up with a calmer, more regulated nervous system. It makes all the difference when I can manage it. For many years I thought I had to step back to the sidelines of life in order to be well, but I'm beginning to learn how to stay well in the midst of it all. It's a delicate balance...
That's a really interesting perspective and so true. Like you I like to be in the midst, not on the sidelines. 'How to effort less' - that will stay with me! I think that is really where I'm at - so I want to be at the "thing" but perhaps need to consider how I get there, or for how long in order that when I'm there I can show up in the way that is right for me. It's ongoing as you say!! We find our way.. xxx
Your conversation with Rachel has deeply inspired me to write about the struggle in slowing down. A reader has asked me to write about rest before - when to do it, what to do, how do you know? But the words haven’t yet flowed, since your podcast they’re coming and I’m feeling more ready to tackle the subject. (Initially announcing my challenge with it to my audience the other year had me feeling sick to the stomach).
I’d like to relisten to mine and write on the reflections too (thanks again for the inspo).
I’m 6 years in (to waking up to disability and choosing the path to wellness), my day to day is one long wellness practice. The first 4 years felt like a 24/7 job (but so was disability by illness). 4 years in something flipped and now it’s become my way of life. (Though I am still one massive screen addict, nothing else remains the same)
I’ve had enormous pressure on myself like anyone else, the incessant beating myself up internally - and berating myself constantly (eventually linking this to the aftermath of the physical pain where I would feel like I’d been beat up from the inside out all the way around my head in recovery from each attack). Though this programming was still very much there, operating away, running various aspects of the show - when it came to wellness practices, I learned to let my body take the reigns (best I could) and made changes as guided by my body, in an intuitive way (which combined with research, insight, knowledge, understanding etc - I guess all from an empowered place).
It’s been a long ass road! I’m on a new path now (of ease and release) and as wonderful as this is, it’s damn tricky to stay on.
It is a tricky path indeed, but also one that I think changes, and that's ok. I think you've hit the nail on the head with 'intuition'. We are actually pretty good at knowing what we need for ourselves. When people nag at me 'why are you writing?', 'why don't you rest?', they don't understand that in that moment writing is rest. You have been on such a long journey my friend, and I can't wait to read your words on slowing down. There is always another way. Much love to you xx
I’m writing it now because my online yoga session has been put back. It is bringing up an enormous amount of grief for me. No wonder I haven’t been able to write this piece yet!
So much emotion - and, as you know, the one wellness practice I struggle with is crying.
I’ve known for a year that there is a massive uncontrollable, probably lasting hours, crying sesh in me to come up and out and I’m now pretty certain it’s linked to the grief of 2018.
Latterly, the insight I missed which has caused me immense pain for a further 4 years than it would have done if I’d realised it at the time. This has turned into part 2 of the blog and it looks like there is going to be a 3rd part!
For now though, it’s become all too much and I need to go for a walk before yoga x
Oh honey, take it slow (the irony of me saying this is not lost on me!!). Take your time. Step away and come back as you need. At some point the words, and I’m sure the tears, will flow ❤️❤️❤️❤️
This is SO interesting Emma. We've come away in the van much to the family's horror, who are shouting at me that I need to rest! But my mind spiral downwards into despair if I just sit around. (I've just had a biopsy in a delicate place and after the death of my mother I'm knocked for six). We roamed an Iron Age reconstruction site at a very slow pace and then I slept all afternoon but so much better than just staying at home. Will listen to your interview later today
That's exactly it Sue - I am always being told to 'stop' or 'slow down', but stopping in that sense is not good for me. Trust your intuition. Being in your van, in your happy place, with the person that makes you feel safe. I imagine that will feed your soul and keep your mind just the right side of the spiral. I'm so sorry for everything you're going through right now, but heartened that you have places you can go to and rest whilst on the move. Much love, say hi to Alnwick for me xx
It's so good to find someone who understands all this! I'm rubbish if I stop!!
Meeting Maria for a drink! Hope to see you at the next Alnwick Story Fest if not before xxx
Same!!! Love to Maria, will def see you in Alnwick if not before. Remember, if you’re ever in Surrey… 😍
Thanks Emma. Glad you’re re-sharing here. I have had it explained by my healthcare team that trying to rest in frustration is not resting. Sometimes I do the brain work in bed, sometimes I do the walk and accept that there will be no ‘brain spoons’ today. Some part of me is resting either way. Life works best if I pace between types of load, so I don’t overuse one type of (metaphorical) muscle. Some days you have to choose between legs and brains, and some days the only way is complete rest and I’m not given a choice, but then there are occasional days where I can do almost what I could in The Before. Its a wild ride and good that we can acknowledge its different for each of us, and on different days.
Yes to this!!! 'Trying to rest in frustration is not resting' is EXACTLY it. Like you, I need to pace between the different types of load. Writing without speaking or engaging can be extremely restful for me. Sometimes I need to put that down and sleep, sometimes float in the water, sometimes gently connect with others. There are also the complete rest days which I now surrender to without the guilt although I do still carry a frustration around 'lost time'...I'm working on that. A wild ride indeed. Much love my friend x
I love that important insight Michelle “trying to rest in frustration is not resting”. You sound like you have a decent healthcare team.
It sure is a wild ride and very different for us as individuals on different weeks and days, never mind one another.
I do have a good team, Amber, and carefully chosen for ME/CFS knowledge and some ‘lived experience’. It helps that we have universal basic health care in Australia & I live in the inner city so there are doctors & other experts available within reach.
I’m so glad to hear that Michelle 🙏🩵 I’d still come and feed your cat on days that it’s needed if I lived near. We need all the support we can get and if there’s anything I’m learning it’s that a full team is required.
Thank you Amber. You are 100% correct, we do need all the support we can get. And pulsed support would be amazing. Most of the time i jog along pretty well, certainly able to feed my beloved cats, but just the other day i phoned a friend because a bad migraine meant I technically could get out of bed but really really didn’t want to as it would make the headache worse.