Love this ❤️ thank you for sharing. So many insights and little nuggets that have got the cogs in my brain whirring. I also feel so validated! Definitely going to sit with those prompts next time I journal x
I love this post so much, Amber. Lately I’ve begun thinking of recovery as “am I any bit better than I was?” While I believe I can fully recover and have a great deal of hope around it, I also know that if I don’t, life will still be good. Just like the migraine author you cited.
This is exactly where I’m at. I’ve learned to live a life I love not in spite of everything I’ve been through, but because of it.
Interestingly the author of 10 did not believe she could get better. I still remain very intrigued by the role our belief system plays in our wellness.
Whilst there’s clearly a great deal more to it than that, I do believe it to be like some kind of foundation - that we can rebuild our health back up from there.
“Regaining possession or control of something” - letting go of control was one of the many breakthroughs I’ve experienced in my healing. It plays its part in why I am as well as I am now.
It’s been fascinating to sit with and see how this is all portrayed, researched (or not) and received by those of us living with complex illness as well as those supporting us with it. No wonder it’s in such a state of screwball scramble😆
Thank you for this post - it is so interesting to stop and really think about what 'recovery' is to you personally. I like the idea of it being 'a process of change' rather than as being 'cured'. I also completely agree that it is different for everyone.
For me, recovery is very much being at peace with not having control - I'm on my way there, but still struggle with this some days. With the way society is set up, I think it is so difficult for us to achieve and maintain this! As I'm sure is the case with many chronically ill people, I've set up a bubble and only let in people who adopt a similar mindset to me regarding chronic illness and recovery. But when I have to venture outside of that, particularly for hospital or doctor's appointments, I find that I can have a wobble and start questioning whether or not I am really 'ok' and whether I just need to do X, Y or Z better and then I will be 'cured'. It's ironic that hospital appointments end up knocking me off my recovery path!
“being at peace with not having control” what a lovely intention! I have no doubt that the way society is set up made it so much more difficult for me to get well. Last year, I learned that this is historic and we’ve documented the difficulties people have experienced with their mental health for not just decades but centuries (lord byron who was alive in the 1800’s being one case I read into last year at his stately home in the uk).
Incredible insight you have gleaned at the end re the current misalignment with hospital apts and recovery. The misunderstanding of something so complex is so great in the majority of cases atm and it is becoming more obvious.
Such a wonderful offering here Amber, and very aligned with “unfixed”! I’ve never looked up the official definition of recovery, but I appreciate you pointing me towards it, and its limited, one-dimensional approach: a return to control. I’m right alongside you in the experience of making peace with NOT having control has been a very integral if not central part of my own “healing.” And I put that word in quotes bc, like you, I still live with daily symptoms, AND I’m at peace with that. 🙏
I’ve never looked up the definition before now either.
I could only feel it in the word that it does not describe my journey in getting from where I’ve been all my adult life to where I’ve taken myself in the past near 7 years.
Interestingly, I have a whole new outline for a 5th book this month! And it’s all about letting go of managing, fixing and controlling.
This 5th book will be including migraine story snippets from those who come on my newly launched podcast, Your Migraine Story Matters. I have a sneaky suspicion that not one person I meet with with tell me they controlled their way out of the worlds most complex neurological disorder and most disabling disease in women under 50.
As much as I hope it isn’t, let me know if migraine is a condition you experienced and would like to come on as a guest.
I’m in the atypical migraine subset called vestibular migraine. My main neurological diagnosis is Mal de Débarquement Syndrome, a 24/7 perception of rocking, bobbing or swaying, but VM accompanies this diagnosis, adding to its unpredictable severity. I’d be happy to share if you feel it’s relevant, it could be a helpful addition to your show, as VM is maddening, debilitating, and all-too misunderstood and misdiagnosed (like regular migraine). My memoir explores this experience in depth and will be coming out this Oct through Empress Editions—so I think we’d have loads to talk about. DM me if you’d like to connect!
Really great post Amber, a really clear explanation of how you see recovery and how others might. I have had too many people say they know a way I could be cured and that really triggers me because it is represented as a failure on my part for not being cured, (in fact just this week a neighbour said she could put me in touch with someone who cures ME as if it's easy and I just haven't tried) this piece shows much more realistic recovery journeys and the joy they can bring. I love your focus on the small wins and keeping the hope in your continued journey! You have really lifted me this week, thank you 💖 I am looking at my wins today 💖
I really appreciate you sharing all this feedback Rachel. It’s incredibly helpful to me but also I know you’re having a tough week and I recognise the spoons this level of reading and response requires. 🙏✨
It’s such a massively triggering topic. Deeply misunderstood. And I’m so sorry to hear you had a neighbour state that to you.
Through reading unwell women, I’m learning that the “cure” is somewhat of a myth. We’ve always professed to have one or that one is possible - even if it was made up.
I’ve had someone recently dumping comments on my linked in posts. Stating migraine is curable when we get to the root cause of emotions. They appear to be in the spiritual/healing arena.
Ive been replying to engage some kind of conversation but its a dump it and run scenario. The same statement copied and posted each time so I’ve now blocked that person.
I actually do believe we can fully heal ourselves via root myself cause - even though I am still on this journey (I cannot shake this belief it’s so bizarre I don’t know where it comes from).
But I also understand the monstrosity of this journey, how deeply complex it is and how difficult we make it for patients to share their stories (From publishing, to press coverage, to media reviews etc). It’s a minefield!
The one thing I am connecting with now on a deeper level though once moving past my own triggers, is that collectively we do have this unconscious belief that we can heal ourselves. And it’s manifesting in this cute, fix, manage approach. I feel that belief we can do something about it is a good sign. And it’s left me wondering if we’re now on the journey to finding out how? And that maybe we’ve just gone off on a bit of a tangent with it all.
Love this ❤️ thank you for sharing. So many insights and little nuggets that have got the cogs in my brain whirring. I also feel so validated! Definitely going to sit with those prompts next time I journal x
🥰🥰🥰that’s so nice to hear that you feel validated!!🥲🥲
I’d love to hear any insights the journalling uncovers for you.
I love this post so much, Amber. Lately I’ve begun thinking of recovery as “am I any bit better than I was?” While I believe I can fully recover and have a great deal of hope around it, I also know that if I don’t, life will still be good. Just like the migraine author you cited.
Thanks Amy!
This is exactly where I’m at. I’ve learned to live a life I love not in spite of everything I’ve been through, but because of it.
Interestingly the author of 10 did not believe she could get better. I still remain very intrigued by the role our belief system plays in our wellness.
Whilst there’s clearly a great deal more to it than that, I do believe it to be like some kind of foundation - that we can rebuild our health back up from there.
I agree! The mind is so powerful here.
“Regaining possession or control of something” - letting go of control was one of the many breakthroughs I’ve experienced in my healing. It plays its part in why I am as well as I am now.
100% YES
It’s been fascinating to sit with and see how this is all portrayed, researched (or not) and received by those of us living with complex illness as well as those supporting us with it. No wonder it’s in such a state of screwball scramble😆
Thank you for this post - it is so interesting to stop and really think about what 'recovery' is to you personally. I like the idea of it being 'a process of change' rather than as being 'cured'. I also completely agree that it is different for everyone.
For me, recovery is very much being at peace with not having control - I'm on my way there, but still struggle with this some days. With the way society is set up, I think it is so difficult for us to achieve and maintain this! As I'm sure is the case with many chronically ill people, I've set up a bubble and only let in people who adopt a similar mindset to me regarding chronic illness and recovery. But when I have to venture outside of that, particularly for hospital or doctor's appointments, I find that I can have a wobble and start questioning whether or not I am really 'ok' and whether I just need to do X, Y or Z better and then I will be 'cured'. It's ironic that hospital appointments end up knocking me off my recovery path!
“being at peace with not having control” what a lovely intention! I have no doubt that the way society is set up made it so much more difficult for me to get well. Last year, I learned that this is historic and we’ve documented the difficulties people have experienced with their mental health for not just decades but centuries (lord byron who was alive in the 1800’s being one case I read into last year at his stately home in the uk).
Incredible insight you have gleaned at the end re the current misalignment with hospital apts and recovery. The misunderstanding of something so complex is so great in the majority of cases atm and it is becoming more obvious.
Such a wonderful offering here Amber, and very aligned with “unfixed”! I’ve never looked up the official definition of recovery, but I appreciate you pointing me towards it, and its limited, one-dimensional approach: a return to control. I’m right alongside you in the experience of making peace with NOT having control has been a very integral if not central part of my own “healing.” And I put that word in quotes bc, like you, I still live with daily symptoms, AND I’m at peace with that. 🙏
Thank you🙏🩵
I’ve never looked up the definition before now either.
I could only feel it in the word that it does not describe my journey in getting from where I’ve been all my adult life to where I’ve taken myself in the past near 7 years.
Interestingly, I have a whole new outline for a 5th book this month! And it’s all about letting go of managing, fixing and controlling.
This 5th book will be including migraine story snippets from those who come on my newly launched podcast, Your Migraine Story Matters. I have a sneaky suspicion that not one person I meet with with tell me they controlled their way out of the worlds most complex neurological disorder and most disabling disease in women under 50.
As much as I hope it isn’t, let me know if migraine is a condition you experienced and would like to come on as a guest.
I’m in the atypical migraine subset called vestibular migraine. My main neurological diagnosis is Mal de Débarquement Syndrome, a 24/7 perception of rocking, bobbing or swaying, but VM accompanies this diagnosis, adding to its unpredictable severity. I’d be happy to share if you feel it’s relevant, it could be a helpful addition to your show, as VM is maddening, debilitating, and all-too misunderstood and misdiagnosed (like regular migraine). My memoir explores this experience in depth and will be coming out this Oct through Empress Editions—so I think we’d have loads to talk about. DM me if you’d like to connect!
Yes I’d def like to connect! Let’s get booked in for a virtual cuppa and record an episode - I’ll dm you
Then we can preempt the recording of a future episode once I’ve read your book and we can catch up/promote that !!!
Looking forward to connecting with a fellow human who has discovered peace within the storm.:)
Really great post Amber, a really clear explanation of how you see recovery and how others might. I have had too many people say they know a way I could be cured and that really triggers me because it is represented as a failure on my part for not being cured, (in fact just this week a neighbour said she could put me in touch with someone who cures ME as if it's easy and I just haven't tried) this piece shows much more realistic recovery journeys and the joy they can bring. I love your focus on the small wins and keeping the hope in your continued journey! You have really lifted me this week, thank you 💖 I am looking at my wins today 💖
I really appreciate you sharing all this feedback Rachel. It’s incredibly helpful to me but also I know you’re having a tough week and I recognise the spoons this level of reading and response requires. 🙏✨
It’s such a massively triggering topic. Deeply misunderstood. And I’m so sorry to hear you had a neighbour state that to you.
Through reading unwell women, I’m learning that the “cure” is somewhat of a myth. We’ve always professed to have one or that one is possible - even if it was made up.
I’ve had someone recently dumping comments on my linked in posts. Stating migraine is curable when we get to the root cause of emotions. They appear to be in the spiritual/healing arena.
Ive been replying to engage some kind of conversation but its a dump it and run scenario. The same statement copied and posted each time so I’ve now blocked that person.
I actually do believe we can fully heal ourselves via root myself cause - even though I am still on this journey (I cannot shake this belief it’s so bizarre I don’t know where it comes from).
But I also understand the monstrosity of this journey, how deeply complex it is and how difficult we make it for patients to share their stories (From publishing, to press coverage, to media reviews etc). It’s a minefield!
The one thing I am connecting with now on a deeper level though once moving past my own triggers, is that collectively we do have this unconscious belief that we can heal ourselves. And it’s manifesting in this cute, fix, manage approach. I feel that belief we can do something about it is a good sign. And it’s left me wondering if we’re now on the journey to finding out how? And that maybe we’ve just gone off on a bit of a tangent with it all.