This was a wonderful piece ❤️ resonated a lot - I got diagnosed with chronic uti a few years ago now, and my personal experience with the illness has been incredibly systemic. My main symptoms of the illness are chronic nausea and exhaustion, along with alot of pelvic pain/bladder pain. When I flare I reach extremely high temperatures and my blood pressure drops like crazy so I feel like pure shit. I had 2 straight years where I was entirely bed bound (it’s more housebound now, and it is changing) so a lot of what you’ve discussed I can completely relate too. It was such an avalanche at the age of 21 going from being completely able bodied and young to being so severely unwell I couldn’t get out of bed.
Not being able to work, exercise or see friends absolutely wrecked me and I struggled alot with such intense grief of the life I thought I would have after uni compared to my reality. I’m on long term antibiotic treatment for cUTI which wrecks me in other ways! The comments you made about neuropathic pain I completely relate too - antibiotics have give me neuropathy and it’s exhausting to be in so much pain. Also the food! I’ve had to completely change my diet, there’s so much I can’t eat, the level of attention it requires to monitor your diet in the way it seems we both have too is so emotionally taxing.
It’s all so heavy. Thinking of you ❤️ I think your newsletter is so great, it really is hard to be so vulnerable about your health, especially on the internet. The disclaimer at the end made me chuckle because it is so true. It’s so depressing but you do have to remind people that you have covered all bases, are a complete expert in your illness & body and a herb cleanse or some yoga is not going to make you better.
Thank you so much for sharing and commenting! Urgh the grief is sooo heavy when you loose your body like this. So sorry to hear about your struggles too. It’s a lot to manage. And thank you for your kind words.
I was advised by my doctor not to accept an ME diagnosis because, as he put it, 'there's no cure and since you have the mild form there's a chance you'll work again'. He was dismissive of the exercise therapy that is the bulk of the NHS treatment for ME, a stance that I've since learned a lot of people with ME agree with.
He was right on both counts, I do work now, but half of that battle was receiving diagnosis and treatment for my ADHD, which not only improved my quality of life it itself but meant I could actually take care of myself. Even my intolerance of gluten eased after a few years. I thought I had entered remission entirely, but after my first hiking trip (where old ladies both outpaced me and went further than I did) I think I've put myself in PEM. Is there such a thing as true remission for ME or is it just a case of not being in an active flare? I'm not sure.
But I thank you for sharing your experience. It's certainly got me to re-think mine and maybe take steps to rest more and reduce input for a bit whilst I recover. I hope for the best for you, whatever you want for yourself I hope you get it.
Something that stood out to me in particular was how you describe listening to 'easy' TV on low with a mask and shut curtains, because that's what I do now with migraines because my brain needs something to distract itself from the godawful pain or it just shreds itself. Sometimes I hallucinate and at least with the TV on I can control what it is that's stood at the end of my bed. And people just don't get it. 'Well, if you can watch the TV you can do x'. No, you try lying here for ten hours in awful pain for the third day in a row and see how you cope with staring at the wall. Obviously, I'm lucky in that these episodes are infrequent, but I saw myself in your experience and I'm so glad you are talking about it because nobody does and people just don't get it.
Thank you so much for sharing! And yes, the ‘passify your brain with easy tv’ is very hard for people to understand. Generally, it’s hard for a lot to understand that we have to pace our minds too, and keep our brains passive, because thinking can be too much. There are a few people who go into true remission, and then there are those with periodic ME too. Urgh and neuropathic pain IS the worst!! Thank you again for sharing!
Thank you for sharing your story. It's important that we do so that we can all understand each other better. I, myself, live with chronic recurring depression that may or may not also be something else in the physical body and I relate to a lot of what people with various chronic illness share about pain, fatigue, brain fog ...
Thank you for sharing, your story is one I wouldn’t have heard if you hadn’t have written it. I appreciate hearing from all different people in life, but just hear, but get a look into their lives.
It’s interesting as I read through my questioning mind was like ‘how can I help, how can I problem solve x, y or z for her’. Perhaps the rescuer in me. But I found it interesting because unsolicited advice is something I bloody hate (excuse the language) as someone who suffers from chronic pain and fatigue. So that is something I’ll be pondering!
I have questions though, if you don’t mind me asking. How do you decide on a time with your friends? Was it a matter of trying and testing? Would it be the same amount of time always? Do you chose a funky alarm or the standard alarm that comes with the phone and is like a shock to the system? Optional questions of course.
Thank you for taking an interest! And yeah, I go into rescue mode too sometimes when I hear of a friend in difficult situations, I get a bit annoyed at myself when that happens because I hate unsolicited advice, but I try to meet myself with compassion too. The timing with friends has been trial and error. Literally, talking for too long and then remembering roughly when I started to feel it. And yes, because I’m so stable (and my days are based on routine) and do nothing all day it’s always the same time. The alarm we use is usually like a soft bell sort of alarm. I don’t find it shocks the system.
I love hearing about how other people deal with their lives. Thank you for sharing and using your precious energy to reply.
Rescue mode is so true, just yesterday did it with a friend and reflecting with another friend she said back to me what I said ‘I’m trying to help but it feels like I’m not’. Yup rescue mode, now I’ve got a name for it.
That’s very interesting that your condition is stable and you live by a routine. I’d assumed everyone was like me… I live with chronic pain and fatigue, a very different scenario, my condition fluctuates massively.
Do you find the stability good, as you can build routines? Or harder as it’s the same? Again, I’m very curious and all questions are optional 💗
Well it hasn’t always been stable. It’s stable because of medication and lots of rest and because of the routine and lots of care from my parents. But just a few years ago it was all over the place. It’s easier to plan when it’s stable, I know exactly what I can handle down to the meter or second, but it’s an aweful low level of function...
So that's even more interesting! You've put in so much work, well you, your parents and your doctors (though I'd attribute that work to you as doctors I think do much less than what it takes to get there, on many levels, especially from what you've described here). Perhaps I have a new word and something to aspire for, stable. As @Amber (who I can't tag but I've noticed is liking my comments) knows, I'm constantly looking for new vocabulary and ways to move forward with my health journey.
I can read and now have a deeper understanding of what low level function looks like. I was today years old when I realised ME could be that debilitating.
Again, thank you for your energy, I so appreciate your insights x
Wow. I relate to so much of this. One of my greatest challenges is having such a brain that wants to create but having so little strength to do the creating… I’m so glad to meet you. Hal
Thank you for writing this. I'm living with mostly moderate ME/CFS and having a hysterectomy this week. My partner and I have been talking and preparing for my recovery so that I am resting in hopes of preventing my baseline dipping even lower, but I'd be lying if I said I wasn't worried the physical trauma of the surgery will be enough to push me closer or all the way into the severe category because it's been my experience so far that every step I falter on, I never get back. I really fucking hate this disease.
So sorry to hear about the surgery on top of ME. I really hope you’ll be able to get as much rest (and fluids) afterwards to avoid a relapse into severe ME. I so understand the fear! I’m hoping for the best possible outcome 🌸
Setting the timer, walking slowly in to sit where it's okay to, and being alongside you to listen - to whatever and for however long.
Thank you for taking what must have been a huge effort and pain (literal not figurative!) to produce this article. I'm happy to see how well it's been received.
I detest it when people try to tell me how to do a better job of caring - for my parents...I could soapbox for hours but, I don't want to waste your reading time/space/energy with my rant ;-)
I want to say, and this may sound weird - but I don't pity your situation or look at your situation and say, 'Ohhh, poor her' because you've written with such clarity and perseverance and STILL finding Your way to achieve a quality of life that works for you - you've shared a glimpse into just how much work, energy and 'life' that takes out of you to have this quality that I often(strike that) DO take for granted. For me, the paradox is that this is an article of strength and perseverance to live a valuable-quality life. (you can tell it also brings out. my empathy gene!)
If in any way that offends or does not resonate, please ignore this. Just know I feel a little bit more educated & deeply empathetic.
You're very welcome Madelleine. It's the same and different for Caregivers.
A small soapbox moment if you've energy & time:
Away from the bright lights and superficial veneer of mainstream 'society', a tiny step out to the side or a layer deeper under the veneer, 'perfectly imperfect humans are struggling hard at life.' It's uncomfortable and painful to see or acknowledge (unless a banner is waved in the public main news or sensationalised). Many carers avoid the mainstream because, in crisis, there's no time/energy to spare that doesn't offer hands-on support.
So Different from your everyday perseverance to live a quality life, yet the Same in the 'hidden behind-closed-doors' . It's good to see each other and be seen.
Really took a lot from reading this. Thank you for sharing so much, your written words are so needed in the world. Though it only comes from a place of writing as Is in the moment, so I can only imagine how much this takes from you. Though I do hope there have been gifts to be found and received too.
I was so happy to read you have friends who visit and chat, parents who care and support you fully.I have found this to be utterly essential on my journey. I’d go as far as to say I found this more important and myself personally, in desperate need for it more than anything else (including medication/treatment etc).
I have Long Covid, and I’m so glad you left comments on so I could tell you how much this post meant to me. You’re stronger than anyone around you, you’re made of steel with everything you’ve endured, and I get it, I really do. It’s an isolating illness; I’m like you and know there are people like us who are much more severe and my heart goes out to them. I’ve found support that’s kept me afloat, too, and I’m here for you. Thank you for writing this.
Sending all the hugs 💜 I am saving this to send to family and friends as lots do not get just how bad ME can be. The toxic positivity in response to me voicing my concerns I could potentially get much worse after my upcoming operation is from a place of love but also based on a lack of knowledge / misinformation and disbelief.
Thank you 💙 I’m so glad it’s useful. Ooh yeah the toxic positivity… yes, it’s well meaning but so annoying and dismissive. I hope your operation goes well and that you’ll get your needs met underway 🌸
Thank you for sharing more into your day to day life, though I know that words will never be able to fully describe it all. Living through it all. I have CCI from hEDS, a severe accident to my skull and fluroquinolone poisoning.
I was an active med student days prior to my accident, living my best life and within days became bedbound unable to lift my skull. Two years have gone by. I have working on believing I will fully heal but it’s truthfully the hardest thing I’ve ever done. Sending my love
This was a wonderful piece ❤️ resonated a lot - I got diagnosed with chronic uti a few years ago now, and my personal experience with the illness has been incredibly systemic. My main symptoms of the illness are chronic nausea and exhaustion, along with alot of pelvic pain/bladder pain. When I flare I reach extremely high temperatures and my blood pressure drops like crazy so I feel like pure shit. I had 2 straight years where I was entirely bed bound (it’s more housebound now, and it is changing) so a lot of what you’ve discussed I can completely relate too. It was such an avalanche at the age of 21 going from being completely able bodied and young to being so severely unwell I couldn’t get out of bed.
Not being able to work, exercise or see friends absolutely wrecked me and I struggled alot with such intense grief of the life I thought I would have after uni compared to my reality. I’m on long term antibiotic treatment for cUTI which wrecks me in other ways! The comments you made about neuropathic pain I completely relate too - antibiotics have give me neuropathy and it’s exhausting to be in so much pain. Also the food! I’ve had to completely change my diet, there’s so much I can’t eat, the level of attention it requires to monitor your diet in the way it seems we both have too is so emotionally taxing.
It’s all so heavy. Thinking of you ❤️ I think your newsletter is so great, it really is hard to be so vulnerable about your health, especially on the internet. The disclaimer at the end made me chuckle because it is so true. It’s so depressing but you do have to remind people that you have covered all bases, are a complete expert in your illness & body and a herb cleanse or some yoga is not going to make you better.
Thank you so much for sharing and commenting! Urgh the grief is sooo heavy when you loose your body like this. So sorry to hear about your struggles too. It’s a lot to manage. And thank you for your kind words.
I was advised by my doctor not to accept an ME diagnosis because, as he put it, 'there's no cure and since you have the mild form there's a chance you'll work again'. He was dismissive of the exercise therapy that is the bulk of the NHS treatment for ME, a stance that I've since learned a lot of people with ME agree with.
He was right on both counts, I do work now, but half of that battle was receiving diagnosis and treatment for my ADHD, which not only improved my quality of life it itself but meant I could actually take care of myself. Even my intolerance of gluten eased after a few years. I thought I had entered remission entirely, but after my first hiking trip (where old ladies both outpaced me and went further than I did) I think I've put myself in PEM. Is there such a thing as true remission for ME or is it just a case of not being in an active flare? I'm not sure.
But I thank you for sharing your experience. It's certainly got me to re-think mine and maybe take steps to rest more and reduce input for a bit whilst I recover. I hope for the best for you, whatever you want for yourself I hope you get it.
Something that stood out to me in particular was how you describe listening to 'easy' TV on low with a mask and shut curtains, because that's what I do now with migraines because my brain needs something to distract itself from the godawful pain or it just shreds itself. Sometimes I hallucinate and at least with the TV on I can control what it is that's stood at the end of my bed. And people just don't get it. 'Well, if you can watch the TV you can do x'. No, you try lying here for ten hours in awful pain for the third day in a row and see how you cope with staring at the wall. Obviously, I'm lucky in that these episodes are infrequent, but I saw myself in your experience and I'm so glad you are talking about it because nobody does and people just don't get it.
Thank you so much for sharing! And yes, the ‘passify your brain with easy tv’ is very hard for people to understand. Generally, it’s hard for a lot to understand that we have to pace our minds too, and keep our brains passive, because thinking can be too much. There are a few people who go into true remission, and then there are those with periodic ME too. Urgh and neuropathic pain IS the worst!! Thank you again for sharing!
Also, fuck neuropathic pain in particular. It's my least favourite haha. Not sure that I have a most favourite pain, but it's certainly not that.
Thank you for sharing your story. It's important that we do so that we can all understand each other better. I, myself, live with chronic recurring depression that may or may not also be something else in the physical body and I relate to a lot of what people with various chronic illness share about pain, fatigue, brain fog ...
If you're not already familiar with it, you might be interested in The Lady's Illness Library that Rae Katz is putting together: https://raekatz.substack.com/s/ladies-illness-library
Thanks Kathryn! And yes, I follow Rae :) Thanks for the resource though! And thank you too for sharing 💙🩷
Thank you for sharing, your story is one I wouldn’t have heard if you hadn’t have written it. I appreciate hearing from all different people in life, but just hear, but get a look into their lives.
It’s interesting as I read through my questioning mind was like ‘how can I help, how can I problem solve x, y or z for her’. Perhaps the rescuer in me. But I found it interesting because unsolicited advice is something I bloody hate (excuse the language) as someone who suffers from chronic pain and fatigue. So that is something I’ll be pondering!
I have questions though, if you don’t mind me asking. How do you decide on a time with your friends? Was it a matter of trying and testing? Would it be the same amount of time always? Do you chose a funky alarm or the standard alarm that comes with the phone and is like a shock to the system? Optional questions of course.
Sending lots of love ❤️
Thank you for taking an interest! And yeah, I go into rescue mode too sometimes when I hear of a friend in difficult situations, I get a bit annoyed at myself when that happens because I hate unsolicited advice, but I try to meet myself with compassion too. The timing with friends has been trial and error. Literally, talking for too long and then remembering roughly when I started to feel it. And yes, because I’m so stable (and my days are based on routine) and do nothing all day it’s always the same time. The alarm we use is usually like a soft bell sort of alarm. I don’t find it shocks the system.
I love hearing about how other people deal with their lives. Thank you for sharing and using your precious energy to reply.
Rescue mode is so true, just yesterday did it with a friend and reflecting with another friend she said back to me what I said ‘I’m trying to help but it feels like I’m not’. Yup rescue mode, now I’ve got a name for it.
That’s very interesting that your condition is stable and you live by a routine. I’d assumed everyone was like me… I live with chronic pain and fatigue, a very different scenario, my condition fluctuates massively.
Do you find the stability good, as you can build routines? Or harder as it’s the same? Again, I’m very curious and all questions are optional 💗
Well it hasn’t always been stable. It’s stable because of medication and lots of rest and because of the routine and lots of care from my parents. But just a few years ago it was all over the place. It’s easier to plan when it’s stable, I know exactly what I can handle down to the meter or second, but it’s an aweful low level of function...
So that's even more interesting! You've put in so much work, well you, your parents and your doctors (though I'd attribute that work to you as doctors I think do much less than what it takes to get there, on many levels, especially from what you've described here). Perhaps I have a new word and something to aspire for, stable. As @Amber (who I can't tag but I've noticed is liking my comments) knows, I'm constantly looking for new vocabulary and ways to move forward with my health journey.
I can read and now have a deeper understanding of what low level function looks like. I was today years old when I realised ME could be that debilitating.
Again, thank you for your energy, I so appreciate your insights x
Thank you for sharing Madelleine. Thinking of you ♥️
Thank you! ❤️🌸
Wow. I relate to so much of this. One of my greatest challenges is having such a brain that wants to create but having so little strength to do the creating… I’m so glad to meet you. Hal
I am both glad and incredibly saddened that you relate 🌸
Thank you for writing this. I'm living with mostly moderate ME/CFS and having a hysterectomy this week. My partner and I have been talking and preparing for my recovery so that I am resting in hopes of preventing my baseline dipping even lower, but I'd be lying if I said I wasn't worried the physical trauma of the surgery will be enough to push me closer or all the way into the severe category because it's been my experience so far that every step I falter on, I never get back. I really fucking hate this disease.
So sorry to hear about the surgery on top of ME. I really hope you’ll be able to get as much rest (and fluids) afterwards to avoid a relapse into severe ME. I so understand the fear! I’m hoping for the best possible outcome 🌸
Thank you. 🙏🏻
Setting the timer, walking slowly in to sit where it's okay to, and being alongside you to listen - to whatever and for however long.
Thank you for taking what must have been a huge effort and pain (literal not figurative!) to produce this article. I'm happy to see how well it's been received.
I detest it when people try to tell me how to do a better job of caring - for my parents...I could soapbox for hours but, I don't want to waste your reading time/space/energy with my rant ;-)
I want to say, and this may sound weird - but I don't pity your situation or look at your situation and say, 'Ohhh, poor her' because you've written with such clarity and perseverance and STILL finding Your way to achieve a quality of life that works for you - you've shared a glimpse into just how much work, energy and 'life' that takes out of you to have this quality that I often(strike that) DO take for granted. For me, the paradox is that this is an article of strength and perseverance to live a valuable-quality life. (you can tell it also brings out. my empathy gene!)
If in any way that offends or does not resonate, please ignore this. Just know I feel a little bit more educated & deeply empathetic.
Thank you so much for your kind and considerate words! And thank you for seeing the value in my life, not a lot of people see that 🌸
You're very welcome Madelleine. It's the same and different for Caregivers.
A small soapbox moment if you've energy & time:
Away from the bright lights and superficial veneer of mainstream 'society', a tiny step out to the side or a layer deeper under the veneer, 'perfectly imperfect humans are struggling hard at life.' It's uncomfortable and painful to see or acknowledge (unless a banner is waved in the public main news or sensationalised). Many carers avoid the mainstream because, in crisis, there's no time/energy to spare that doesn't offer hands-on support.
So Different from your everyday perseverance to live a quality life, yet the Same in the 'hidden behind-closed-doors' . It's good to see each other and be seen.
A resource you may like https://self-compassion.org/category/exercises/#exercises
Kristen Neff has soft-voiced meditations that are short and soothing. In the hellish no-sleep paramedics-season, these helped.
Thank you for writing this, Madelleine, and being so open with us.
Thank you 🌸
Really took a lot from reading this. Thank you for sharing so much, your written words are so needed in the world. Though it only comes from a place of writing as Is in the moment, so I can only imagine how much this takes from you. Though I do hope there have been gifts to be found and received too.
I was so happy to read you have friends who visit and chat, parents who care and support you fully.I have found this to be utterly essential on my journey. I’d go as far as to say I found this more important and myself personally, in desperate need for it more than anything else (including medication/treatment etc).
Good to hear you got a lot from this post, thank you! And yes, I 100% agree that loving people (and medicine) are the most important on this journey!
I have Long Covid, and I’m so glad you left comments on so I could tell you how much this post meant to me. You’re stronger than anyone around you, you’re made of steel with everything you’ve endured, and I get it, I really do. It’s an isolating illness; I’m like you and know there are people like us who are much more severe and my heart goes out to them. I’ve found support that’s kept me afloat, too, and I’m here for you. Thank you for writing this.
Hi Reda, so glad to have you here (and yet so sad to hear you have LC)! And thank you so much for your kind words 🌸
Sending all the hugs 💜 I am saving this to send to family and friends as lots do not get just how bad ME can be. The toxic positivity in response to me voicing my concerns I could potentially get much worse after my upcoming operation is from a place of love but also based on a lack of knowledge / misinformation and disbelief.
Thank you 💙 I’m so glad it’s useful. Ooh yeah the toxic positivity… yes, it’s well meaning but so annoying and dismissive. I hope your operation goes well and that you’ll get your needs met underway 🌸
Thank you for sharing more into your day to day life, though I know that words will never be able to fully describe it all. Living through it all. I have CCI from hEDS, a severe accident to my skull and fluroquinolone poisoning.
I was an active med student days prior to my accident, living my best life and within days became bedbound unable to lift my skull. Two years have gone by. I have working on believing I will fully heal but it’s truthfully the hardest thing I’ve ever done. Sending my love
Sending you so many thoughts and much love — it must be so incredibly, indescribably hard what you’re going through ❤️🌸❤️
This essay embodies generosity. Thank you.
❤️🌸❤️