Hi Marianne, I can totally relate to all of this, in fact our stories are extremely similar! I feel like you've explained so well what it's like to suffer with such extreme fatigue and other long covid symptoms.. although I never got 'covid mouth' though luckily.. sounds delightful! 😬😆 I hope you don't mind me sharing this with my family and friends, as it it goes a really long way to clarifying what it's been like for me for the past (nearly) FIVE years! I'm so pleased to hear that you are starting to get to a place where you can see a healthy future 👍 Just remember to go gently and don't set yourself back again by over doing it 🧡 I'm such a sucker for this.. I never learn! 🙄
Thanks Eva, I went for a too long walk yesterday and woke up today with a cough! I also never learn.. but maybe we will... with time. Thanks for reading and I'm really glad it resonates and please forward to anyone you like. Hope you recover too, in whatever way is good for you. xx
Thank you so much for sharing. The message is so equally valid for those that haven’t got a chronic illnesses signposting a disregulated nervous system. It’s such a helpful and simple reminder of the joy of a simple life, true to our values. I’ve found this an incredibly helpful read today (and everyday!). Thank you so much x
Kate Weinberg talks about it a lot on this week’s episode but there’s even more on the cutting room floor, so if you’d like to hear the unexpurgated interview message me x
Hi Sam, very late to this message but I’d love to hear the ‘I’m slightly embarrassed I had to google the word’ interview…always up for shots of healthy living perspective, especially with a ‘do you have the courage to live it’ chaser x
We appear to be living very similar illnesses and similar lives. This post serves as a reminder that I have been given tools and forget/neglect to use them. Thank you for a booster shot.
I really enjoy your writing style 😊 I'm Dyslexic and for me the way you write and the spaces you give your text makes it so much easier and more engaging. Just so sorry you had to drop the pastries, chocolate and wine! I'd find that tough but feel the sugar thing is looming in my mind and so maybe I'll give it a try after Christmas!
It's like I wrote this ❤️ The achievement part of us takes over as we operate in a masculine way in our feminine bodies. I'm doing the Gupta Program, it's all about regulation and calming the nervous system. Testing can be good too. High levels of histamine put us in eternal, exhausting fight or flight mode. Get that checked. I'm going on prescription anti histamines, meant to be transformative in our ability to relax. I'm a huge fan of yoga nidra, massive ❤️
Keep going, thanks for writing something so relatable 🙏
A wholehearted yes to this Marianne. I have been asking myself these same questions in my 15+ journey with autoimmune disease. I come back over and over again to a dysregulated nervous system, which I think is at the heart of so much inflammation in our bodies. The body is guiding us, I do believe that, and it knows what it needs to be healthy. We aren't always willing or able to listen though. Thanks for sharing so openly and honestly. This feels highly related and very valuable.
Dear Marianne, There are so many aspects of what you have lived and realized that parallel my life and I am certain MANY other women. We seem to be in a constant race to prove ourselves worthy- of love, of recognition, of our job, our friends ...this must stop. As a secondary school teacher I have given so many hours of my own time to work. My dearest friend calls these hour volunteer. I always assumed it was just a consequence of my job. Then I began to look- teachers in Secondary school are mostly divided with women taking the majority of language, history, and civic classes that have a very heavy writing load. Women hold more than 90% of the teaching positions in elementary education. The women are the ones doing so many volunteer hours that we feel obliged to do - for the good of the children. Have we women been bamboozled by the patriarchy to take more on the emotional baggage (guilt) if we don't try to prove ourselves through overworking ourselves to exhaustion! I am trying so hard to streamline my workload to not do the extra hours but...here I sit on Saturday morning grading and planning. I will also do this tomorrow. It is a vicious cycle of burnout, rest, burnout, rest, and for me depression and rest, and my health cannot take anymore. I would need to find the courage to say no, work hard but within the paid hours even if that means less variety of lessons, and find a life outside of work. I feel like a duck - serene and cool in appearance but fruiously paddling underneath the water.
Yes, yes, yes to yoga nidra, eating well and the big Tesco! My energy does not allow for me to physically go grocery shopping but I get it delivered. I do miss pastries though.
I've been referred to my local CFS/ME support and they talk about stopping the boom and bust cycle. The aim is to get to a stable activity baseline, from which recovery becomes possible. Known as pacing, it is much much harder than it sounds. Good luck
I’m so sorry Marianne, so much of what you describe is familiar. Not long Covid for me but ME/fibro. I’d describe myself as being ‘well’ right now but have to be vigilant. What struck my so much in this was that feeling of wanting to function, wanting/needing to keep pushing forward, to keep being all the things to everyone but not yourself. That’s on my mind massively at the moment as it was this time of year that I fell ill. I also listened to Gabor Mate being interviewed by Kirsty Young which reminded me of your interviews with him that you shared was it earlier this year. I think I’ve only learned very recently - and I’m
53 now - what feeling well really is. Thank for this, it’s choked massively with where my head is right now.
I was gripped throughout your powerful story. I had my second bout of covid (at least as far as tests prove) in August and in the 3 months prior to that had just been starting to see some tangible improvements in the chronic fatigue I've lived with for about 12 years. Even though this year's covid wasn't nearly as bad as the 2021 one, the fatigue has resurged since, along with mouth ulcers (I didn't know until your post that that was even a covid thing!) and cold sores. This virus - which in 2020 I scoffed at, along with all my Covid-denying friends- doesn't fuck around.
I appreciate those days - like yesterday- of feeling normal energy levels and good health so, so much now. Being well really is the priority. And yet, I also follow a lot of writers on here who live with much, much greater levels of bed-bound disability than mine and still find meaning, purpose and even joy in life, deeply accepting their conditions. So, I don't want to say that you can't be OK unless you're physically well, because it feels ableist.
As someone who pushed themselves throughout life, always doing, striving and perfectionist-ing, I resonated so much with your story. Like you, I'm grateful my body finally said Enough is Enough - because my life now has so much more room for magic, slowness, deep connection and the beauty of nature.
Beautiful, Morgana thank you. And yes there are plenty of people living with much more limiting physical conditions and finding beauty and meaning in life. Thank you for the reminder. xx
I’m so sorry it’s floored you again. LC is always lurking waiting to floor you if you take your eye off it for even a second. I think it’s the biggest ask of all to cut yourself the slack you really need if you’ve spent your life jumping through the good girl hoops. Definitely one of those midlife reckonings.
Hi Marianne, I can totally relate to all of this, in fact our stories are extremely similar! I feel like you've explained so well what it's like to suffer with such extreme fatigue and other long covid symptoms.. although I never got 'covid mouth' though luckily.. sounds delightful! 😬😆 I hope you don't mind me sharing this with my family and friends, as it it goes a really long way to clarifying what it's been like for me for the past (nearly) FIVE years! I'm so pleased to hear that you are starting to get to a place where you can see a healthy future 👍 Just remember to go gently and don't set yourself back again by over doing it 🧡 I'm such a sucker for this.. I never learn! 🙄
Thanks Eva, I went for a too long walk yesterday and woke up today with a cough! I also never learn.. but maybe we will... with time. Thanks for reading and I'm really glad it resonates and please forward to anyone you like. Hope you recover too, in whatever way is good for you. xx
Thank you so much for sharing. The message is so equally valid for those that haven’t got a chronic illnesses signposting a disregulated nervous system. It’s such a helpful and simple reminder of the joy of a simple life, true to our values. I’ve found this an incredibly helpful read today (and everyday!). Thank you so much x
My pleasure, Leah. Thanks for reading. I'm only just beginning to be aware of the nervous system stuff, lots to learn. xx
Kate Weinberg talks about it a lot on this week’s episode but there’s even more on the cutting room floor, so if you’d like to hear the unexpurgated interview message me x
Hi Sam, very late to this message but I’d love to hear the ‘I’m slightly embarrassed I had to google the word’ interview…always up for shots of healthy living perspective, especially with a ‘do you have the courage to live it’ chaser x
We appear to be living very similar illnesses and similar lives. This post serves as a reminder that I have been given tools and forget/neglect to use them. Thank you for a booster shot.
I really enjoy your writing style 😊 I'm Dyslexic and for me the way you write and the spaces you give your text makes it so much easier and more engaging. Just so sorry you had to drop the pastries, chocolate and wine! I'd find that tough but feel the sugar thing is looming in my mind and so maybe I'll give it a try after Christmas!
You should talk to Dr Tamsin Lewis, long covid since April 2020
It's like I wrote this ❤️ The achievement part of us takes over as we operate in a masculine way in our feminine bodies. I'm doing the Gupta Program, it's all about regulation and calming the nervous system. Testing can be good too. High levels of histamine put us in eternal, exhausting fight or flight mode. Get that checked. I'm going on prescription anti histamines, meant to be transformative in our ability to relax. I'm a huge fan of yoga nidra, massive ❤️
Keep going, thanks for writing something so relatable 🙏
A wholehearted yes to this Marianne. I have been asking myself these same questions in my 15+ journey with autoimmune disease. I come back over and over again to a dysregulated nervous system, which I think is at the heart of so much inflammation in our bodies. The body is guiding us, I do believe that, and it knows what it needs to be healthy. We aren't always willing or able to listen though. Thanks for sharing so openly and honestly. This feels highly related and very valuable.
Dear Marianne, There are so many aspects of what you have lived and realized that parallel my life and I am certain MANY other women. We seem to be in a constant race to prove ourselves worthy- of love, of recognition, of our job, our friends ...this must stop. As a secondary school teacher I have given so many hours of my own time to work. My dearest friend calls these hour volunteer. I always assumed it was just a consequence of my job. Then I began to look- teachers in Secondary school are mostly divided with women taking the majority of language, history, and civic classes that have a very heavy writing load. Women hold more than 90% of the teaching positions in elementary education. The women are the ones doing so many volunteer hours that we feel obliged to do - for the good of the children. Have we women been bamboozled by the patriarchy to take more on the emotional baggage (guilt) if we don't try to prove ourselves through overworking ourselves to exhaustion! I am trying so hard to streamline my workload to not do the extra hours but...here I sit on Saturday morning grading and planning. I will also do this tomorrow. It is a vicious cycle of burnout, rest, burnout, rest, and for me depression and rest, and my health cannot take anymore. I would need to find the courage to say no, work hard but within the paid hours even if that means less variety of lessons, and find a life outside of work. I feel like a duck - serene and cool in appearance but fruiously paddling underneath the water.
Thanks for listening to my moan.
Tara
Yes, yes, yes to yoga nidra, eating well and the big Tesco! My energy does not allow for me to physically go grocery shopping but I get it delivered. I do miss pastries though.
I've been referred to my local CFS/ME support and they talk about stopping the boom and bust cycle. The aim is to get to a stable activity baseline, from which recovery becomes possible. Known as pacing, it is much much harder than it sounds. Good luck
So glad the autumn leaves and light brought you joy. I hope you have more of that feeling in the coming days and weeks.
Thank you, Lucy. xx
I’m so sorry Marianne, so much of what you describe is familiar. Not long Covid for me but ME/fibro. I’d describe myself as being ‘well’ right now but have to be vigilant. What struck my so much in this was that feeling of wanting to function, wanting/needing to keep pushing forward, to keep being all the things to everyone but not yourself. That’s on my mind massively at the moment as it was this time of year that I fell ill. I also listened to Gabor Mate being interviewed by Kirsty Young which reminded me of your interviews with him that you shared was it earlier this year. I think I’ve only learned very recently - and I’m
53 now - what feeling well really is. Thank for this, it’s choked massively with where my head is right now.
Thanks for reading, Harriet. I'll check out that interview. Here's to feeling really well, whatever that means for us. xx
I was gripped throughout your powerful story. I had my second bout of covid (at least as far as tests prove) in August and in the 3 months prior to that had just been starting to see some tangible improvements in the chronic fatigue I've lived with for about 12 years. Even though this year's covid wasn't nearly as bad as the 2021 one, the fatigue has resurged since, along with mouth ulcers (I didn't know until your post that that was even a covid thing!) and cold sores. This virus - which in 2020 I scoffed at, along with all my Covid-denying friends- doesn't fuck around.
I appreciate those days - like yesterday- of feeling normal energy levels and good health so, so much now. Being well really is the priority. And yet, I also follow a lot of writers on here who live with much, much greater levels of bed-bound disability than mine and still find meaning, purpose and even joy in life, deeply accepting their conditions. So, I don't want to say that you can't be OK unless you're physically well, because it feels ableist.
As someone who pushed themselves throughout life, always doing, striving and perfectionist-ing, I resonated so much with your story. Like you, I'm grateful my body finally said Enough is Enough - because my life now has so much more room for magic, slowness, deep connection and the beauty of nature.
Beautiful, Morgana thank you. And yes there are plenty of people living with much more limiting physical conditions and finding beauty and meaning in life. Thank you for the reminder. xx
I’m so sorry it’s floored you again. LC is always lurking waiting to floor you if you take your eye off it for even a second. I think it’s the biggest ask of all to cut yourself the slack you really need if you’ve spent your life jumping through the good girl hoops. Definitely one of those midlife reckonings.
yes it really does feel like a reckoning... and a demand for a new way of living. Thanks for reading and understanding.
If there’s anything I can do to help, please just shout