Thank you for writing about what it's like to live like this. I know this might not mean much, but it is like a balm to the soul to others who live similarly. To not be spoken to with "answers" and unwanted advice and platitudes, but the messy truth, because we really do just have to be the river, live the questions, there is no other way.
I really appreciate you saying this, thank you Mary. Saying the unspoken things out loud is always frightening for me, but the way it connects me with other people makes it so worth it.
Thank you for pulling the veil aside and allowing us a glimpse of your internal self. It is stunningly beautiful, Josie. I'm sorry you're going through an outsized amount of suffering. 💔
Many of us have shared some of the challenges you're undergoing. As soon as you mentioned your child's mental health struggles, some phases of my motherhood journey immediately came to mind. You are not alone. 💯 You are SO not alone!!! We can feel some of what you're feeling, and we are hopeful for relief for you. Thank you for letting us enter in and hold you for this brief time. You are a precious sister human. I love you. ❤️
Please feel free to Ignore the following bracketed section detailing my experience with meds!!
[I started HRT as I turned 52, one year after my periods stopped. I also began taking an antidepressant, because it was the second winter I was experiencing depressive symptoms. I began with Zoloft and switched to Wellbutrin. These two merciful interventions have made a positive difference for me, have freed up life energy that I sorely need as a mom with ten children still at home, three of whom have significant disabilities. For reference, I'm turning 54 in January.]
Oh my goodness, Susanna, you warrior. Thank you so much for your empathy. I'm only 43 so really didn't expect to be going through menopause stuff so soon, but I'm definitely well on my way and am feeling positive about HRT. It helps so much having found family sisters who are further along in this journey to help show me the way. I've never been more grateful for women! xx
You’re the original, Josie. The first Substack I read that truly changed things for me. I have held on to your words these two years as we have traveled this journey together, and I couldn’t feel more privileged to know you (at least digitally).
Thank you for your experience, your vulnerability, and most of all: your example. Sending you warm appreciation and gentle hugs, with a whispered “thank you so much.”
Oh, Josie, words fail me, but you matter to me. Your courage in your refusal to stop seeing beauty is a gift to me, and your using your words to bring us on your journey matter.
Thank you Debbie. I keep telling myself that even if I'm not achieving loads in the outer world right now, this inner work to shape the way I keep seeing (and perceiving) will hopefully serve me and everyone else I can reach for the rest of my life. It's a different way of being in the world but I am so grateful for it (and you!)
So beautifully written, wishing you good health and ease. This moment matters…if ever I were to get a tattoo this would be it. Thank you for continuing to share your life.
Sending so much love to you. Your work has helped keep me afloat during my own especially challenging chapters of struggles within my body. Wishing you all the very best. Thank you for sharing your truth.
Well this sounds like me 7 years ago. Emotionally, medically. A medical mystery until I found the right doctor willing to believe me and do a different set of tests. They showed I had MCAS. Same symptoms you’re having. Now it’s more common because it’s part of long covid but before COVID few doctors knew about it. Most of them just wanted to prescribe anti anxiety meds & said I was imagining it.
Oh gosh Kelly! I almost certainly have some MCAS stuff going on (it seems to often go as a set with POTS, Endo etc) but yes, almost no doctor will consider it in the UK yet, it's very frustrating. It's been confusing as so many symptoms overlap with hormones/menopause issues too, which I definitely have going on too. I'm so glad you got some answers!
My immunologist thinks I’ve had MCAS all my life but it got acute as I hit menopause. Our immune system is tied to our hormones so trying to separate symptoms is a waste of time. My doctor decided to try me on cromolyn sodium and see how i did rather than do the invasive tests or tell me to get my menopause under control. Based on my response to Cromolyn he diagnosed me with MCAS. So appreciated his approach. I also have Sarcoidosis & dysautonomia all diagnosed at the same time. I found research hospitals better at diagnosing these invisible illnesses here in the US. I don’t know if that’s an option for you.
Oh that's great! It's very hard here to get care outside of your local area/hospital trust and GPs are the gatekeeper to everything (unless you pay privately). MCAS just doesn't seem to be recognised, unless you're having actual anaphylaxis attacks which I'm not. I'm hoping that will change in time. I'm curious to see what difference HRT makes. If it makes things worse, I may have more grounds to push for more help!
HRT made things worse for me but we’re all different & this disease looks different for each person. Even with the medication I’m on a low histamine diet. It helps a ton.
Sending hugs to you Josie. I have MCAS and PoTS as a result of a Covid infection three years ago. I’m lucky that my GP will prescribe fexofenadine to help with the symptoms and I follow a low histamine diet. However since 2023 I’ve had seven significant allergic reactions, the last one being last Monday to the flu jab!! It was horrendous. Dr Tina Peers on YouTube has some helpful advice re MCAS.
Parenting kids with MH is really tough - my two youngest neurodiverse kids both suffer with MH challenges, you are definitely not alone xx
Gosh - I connect so much with all of your words. I am trying to remember to keep my heart soft, but it seems a survival mode strategy of my body to harden it in times of great fear or suffering. Why I wonder? I began anti anxiety medication in March Josie. My brain and body could no longer cope with the endless uncertainty of living with chronic illness. It has turned the volume down on my thoughts. I recommend. You are so loved. X
I find that the hardest thing, the way suffering closes me up, closes us all up. Learning to keep peeling yourself open again can feel so raw and vulnerable but I'm determined to keep trying. Sending you so much love on this journey. I'm so glad the meds have helped!
Thank you for sharing. I wonder if it is the time of year? For me it is. I had a bad day yesterday with everything. Really bad. I ended up by going to bed to rest and sleep. It's still hanging over me but not as bad as yesterday. I'm focusing on my glimpses of joy today - right now, it is two cats sitting on my lap as I write. That forces a smile.
The dark days and low light are really really tough, I'm so sorry. I knew I was in a bad place when even the summer days were a struggle! I hope you've had some easier moments and that rest and sleep can help. That is exactly the thing to do - our animal bodies help show us the way at this time of year. We really are supposed to slow down. I find lighting candles and putting up lots of fairy lights help the darkness feel cave-like and nurturing rather than so oppressive. Sending you lots of love, Patricia x
Poignant Josie. This moment matters. So simple a statement and yet so complex. A reminder to me as I reread Ekart Tolle's The Power of Now for the 3rd time.
Another tool to have in your kit is psoas work - Lisa Koch does a wonderful job explaining it through some of the articles available on her website - https://coreawareness.com/article-education/ - we hold on to so much in our body.
Sending warm wishes for comfort and some moments of peace.
I come back to Tolle over and over. Do you know lots of his talks are on a free podcast called 'Essential Teachings'? They're brilliant! Full of his humour and wisdom. Thank you for the link ❤️
I, too, have been there. That place where you just.have.to stop.
So hard, and we put so much pressure on ourselves, don't we?
What helped me was indeed stopping. Lying there in my white bedroom. Breathing. Reading. Eating. Drinkng.Sleeping. Eventually, the gentlest of yoga moves. Understanding, kind people - husband, family, friends, GP. People who helped with the guilt.
And your book, Josie.
All helped me find words for what was happening and rejoin the human race.
I wish you much better times to come, my friend. Thank you for your honest and beautiful writings.
Thank you for writing about what it's like to live like this. I know this might not mean much, but it is like a balm to the soul to others who live similarly. To not be spoken to with "answers" and unwanted advice and platitudes, but the messy truth, because we really do just have to be the river, live the questions, there is no other way.
I really appreciate you saying this, thank you Mary. Saying the unspoken things out loud is always frightening for me, but the way it connects me with other people makes it so worth it.
Thank you for pulling the veil aside and allowing us a glimpse of your internal self. It is stunningly beautiful, Josie. I'm sorry you're going through an outsized amount of suffering. 💔
Many of us have shared some of the challenges you're undergoing. As soon as you mentioned your child's mental health struggles, some phases of my motherhood journey immediately came to mind. You are not alone. 💯 You are SO not alone!!! We can feel some of what you're feeling, and we are hopeful for relief for you. Thank you for letting us enter in and hold you for this brief time. You are a precious sister human. I love you. ❤️
Please feel free to Ignore the following bracketed section detailing my experience with meds!!
[I started HRT as I turned 52, one year after my periods stopped. I also began taking an antidepressant, because it was the second winter I was experiencing depressive symptoms. I began with Zoloft and switched to Wellbutrin. These two merciful interventions have made a positive difference for me, have freed up life energy that I sorely need as a mom with ten children still at home, three of whom have significant disabilities. For reference, I'm turning 54 in January.]
Oh my goodness, Susanna, you warrior. Thank you so much for your empathy. I'm only 43 so really didn't expect to be going through menopause stuff so soon, but I'm definitely well on my way and am feeling positive about HRT. It helps so much having found family sisters who are further along in this journey to help show me the way. I've never been more grateful for women! xx
Thank you for receiving my words graciously, Josie. You warrior.
You’re the original, Josie. The first Substack I read that truly changed things for me. I have held on to your words these two years as we have traveled this journey together, and I couldn’t feel more privileged to know you (at least digitally).
Thank you for your experience, your vulnerability, and most of all: your example. Sending you warm appreciation and gentle hugs, with a whispered “thank you so much.”
This is so precious to me xxxx
Oh, Josie, words fail me, but you matter to me. Your courage in your refusal to stop seeing beauty is a gift to me, and your using your words to bring us on your journey matter.
Thank you Debbie. I keep telling myself that even if I'm not achieving loads in the outer world right now, this inner work to shape the way I keep seeing (and perceiving) will hopefully serve me and everyone else I can reach for the rest of my life. It's a different way of being in the world but I am so grateful for it (and you!)
So beautifully written, wishing you good health and ease. This moment matters…if ever I were to get a tattoo this would be it. Thank you for continuing to share your life.
I've made it my phone screen's message and it's been such a good guide. I love the idea of a tattoo! Thank you Sheila x
Sending so much love to you. Your work has helped keep me afloat during my own especially challenging chapters of struggles within my body. Wishing you all the very best. Thank you for sharing your truth.
I appreciate this so much. Sending all love back to you and then some, Raleigh. Thank you.
Oh, Josie. No words, just send much love and healing Qi ♥️♥️
I was trying to write more words but my brain is short on those today so I will just send some hope that things will get easier for you soon 💚
Well this sounds like me 7 years ago. Emotionally, medically. A medical mystery until I found the right doctor willing to believe me and do a different set of tests. They showed I had MCAS. Same symptoms you’re having. Now it’s more common because it’s part of long covid but before COVID few doctors knew about it. Most of them just wanted to prescribe anti anxiety meds & said I was imagining it.
Oh gosh Kelly! I almost certainly have some MCAS stuff going on (it seems to often go as a set with POTS, Endo etc) but yes, almost no doctor will consider it in the UK yet, it's very frustrating. It's been confusing as so many symptoms overlap with hormones/menopause issues too, which I definitely have going on too. I'm so glad you got some answers!
My immunologist thinks I’ve had MCAS all my life but it got acute as I hit menopause. Our immune system is tied to our hormones so trying to separate symptoms is a waste of time. My doctor decided to try me on cromolyn sodium and see how i did rather than do the invasive tests or tell me to get my menopause under control. Based on my response to Cromolyn he diagnosed me with MCAS. So appreciated his approach. I also have Sarcoidosis & dysautonomia all diagnosed at the same time. I found research hospitals better at diagnosing these invisible illnesses here in the US. I don’t know if that’s an option for you.
Oh that's great! It's very hard here to get care outside of your local area/hospital trust and GPs are the gatekeeper to everything (unless you pay privately). MCAS just doesn't seem to be recognised, unless you're having actual anaphylaxis attacks which I'm not. I'm hoping that will change in time. I'm curious to see what difference HRT makes. If it makes things worse, I may have more grounds to push for more help!
HRT made things worse for me but we’re all different & this disease looks different for each person. Even with the medication I’m on a low histamine diet. It helps a ton.
Sending hugs to you Josie. I have MCAS and PoTS as a result of a Covid infection three years ago. I’m lucky that my GP will prescribe fexofenadine to help with the symptoms and I follow a low histamine diet. However since 2023 I’ve had seven significant allergic reactions, the last one being last Monday to the flu jab!! It was horrendous. Dr Tina Peers on YouTube has some helpful advice re MCAS.
Parenting kids with MH is really tough - my two youngest neurodiverse kids both suffer with MH challenges, you are definitely not alone xx
Gosh - I connect so much with all of your words. I am trying to remember to keep my heart soft, but it seems a survival mode strategy of my body to harden it in times of great fear or suffering. Why I wonder? I began anti anxiety medication in March Josie. My brain and body could no longer cope with the endless uncertainty of living with chronic illness. It has turned the volume down on my thoughts. I recommend. You are so loved. X
I find that the hardest thing, the way suffering closes me up, closes us all up. Learning to keep peeling yourself open again can feel so raw and vulnerable but I'm determined to keep trying. Sending you so much love on this journey. I'm so glad the meds have helped!
Thank you for sharing. I wonder if it is the time of year? For me it is. I had a bad day yesterday with everything. Really bad. I ended up by going to bed to rest and sleep. It's still hanging over me but not as bad as yesterday. I'm focusing on my glimpses of joy today - right now, it is two cats sitting on my lap as I write. That forces a smile.
The dark days and low light are really really tough, I'm so sorry. I knew I was in a bad place when even the summer days were a struggle! I hope you've had some easier moments and that rest and sleep can help. That is exactly the thing to do - our animal bodies help show us the way at this time of year. We really are supposed to slow down. I find lighting candles and putting up lots of fairy lights help the darkness feel cave-like and nurturing rather than so oppressive. Sending you lots of love, Patricia x
Just beautiful ❤️ made a donation, kindred spirit! 🙂
Thank you so much for this. I was delighted to find your Substack too! x
I feel you!
Sending lots of love ❤️
You have been missed Josie. I'm so sorry you have been so poorly. Sending much love and healing for your continued recovery. ❤️
Poignant Josie. This moment matters. So simple a statement and yet so complex. A reminder to me as I reread Ekart Tolle's The Power of Now for the 3rd time.
Another tool to have in your kit is psoas work - Lisa Koch does a wonderful job explaining it through some of the articles available on her website - https://coreawareness.com/article-education/ - we hold on to so much in our body.
Sending warm wishes for comfort and some moments of peace.
I come back to Tolle over and over. Do you know lots of his talks are on a free podcast called 'Essential Teachings'? They're brilliant! Full of his humour and wisdom. Thank you for the link ❤️
I did not know that Josie about the podcast - thank you so much for telling me that! I listened this morning. 8-)
Dear Josie,
I, too, have been there. That place where you just.have.to stop.
So hard, and we put so much pressure on ourselves, don't we?
What helped me was indeed stopping. Lying there in my white bedroom. Breathing. Reading. Eating. Drinkng.Sleeping. Eventually, the gentlest of yoga moves. Understanding, kind people - husband, family, friends, GP. People who helped with the guilt.
And your book, Josie.
All helped me find words for what was happening and rejoin the human race.
I wish you much better times to come, my friend. Thank you for your honest and beautiful writings.
Xxx
Debra, there is so much warmth in your words, thank you. Your comment really touched me. Here's to normalising stopping xx