“Having made the life changes to allow myself to become well both physically and mentally, my body is perhaps now getting to breathe its sigh of relief” literally as I read this statement, my body breathed the huge sigh of relief ! I simply cannot wait to meet online with you this Friday and chat in person....we have so much to talk about. I knew intuitively medication wasn’t the right purse of action for me to take either. It was as if My body was saying “no, no, no”
I wasn’t permitted to see a neurologist until I took at least 4 different types to their maximum dosage. So I went against my body. And I’m the process my health deteriorated more and more and more. Luckily, I had this level of awareness and once the neurologist confirmed there was no support available to me at all whatsoever and the reason behind the meds not working was because I hadn’t taken them long enough, I really started to tune in and pay attention to what my body was communicating to me all along. I haven’t looked back since. Well, only to give thanks, gratitude and praise to myself for drowning out the noise from all around and going within. My body knew the answers all along.
Amber - thank you so much, and for your voice message!! I cannot wait to chat on Friday - will get the Zoom link over now. It is exactly that feeling of going against your body - that's what I feel in my bones. I know it will also be 'my fault' if I don't take the meds. Look forward to swapping stories! xx
It was my fault the medication I was taking under doctors prescription wasn’t working. Then when I went back and mentioned to the neurologist how fatigued I was alllllll the time (even though by that point I’d managed to break the chronic pain cycle - on my own, based on my own awakening, body’s inner knowing, taking back the reigns of creation for my own life, committing to finding out more and researching about the condition myself, doing what little I could when I could, all with the belief that “I matter. My health matters”), his reply?
“Well, I’m not surprised with all the medication you’re on”
Oh Em, what a fantastic and brave piece of writing! 💛 I love how you had to restrain the swearing for your mum 😆 I can relate to so much of what you have written here and I want to thank you for being so open and honest about your health struggles... it really helps me feel understood and less alone 🥰
Whilst health professionals are largely fabulous, I feel it is hugely important to speak up for yourself and your body... You are right that you know your body better than anyone... and our instincts are usually right too. We seem to have "learned" to trust professionals without question and not listen to our instincts as much, to sometimes detrimental consequences. I'm not advocating questioning everybody on every little thing, but if you have a strong feeling/instinct about something.. speak up! Or, if you're not quite ready, give yourself more time to think/research and come back.
I can't believe that the dermatologist said there is no link to diet and skin!! 🤣🤣 Was he having a laugh! There is plenty of evidence to suggest otherwise... and one of the first things I get told about my Psoriasis is that what I eat/don't eat can have a huge impact! 🙄 I wish it didn't though, because I MISS CHEEESE!!! 😭😆
I had to endure 3 chest infections, two bouts of pneumonia and 4 courses of antibiotics in one horrific year when I was 34 before they finally agreed to send me for scans... which subsequently revealed a collapsed lung and a tumour the size of a golf ball! "But you're too young for it to be anything like that" they said... Well, clearly not! 😒
After 7 wonderful years cancer free and thriving... Covid hit and my life turned upside down again. It then took almost 4 years of "it must be long Covid" and "you might be perimenopausal" along with an enormous reluctance to investigate further... it turns out my crippling joint pain, fatigue and hair loss were due to an Autoimmune Disease related to my Psoriasis (called Axial SpondyloArthropathy - for anyone who wants to know 😉). Apparently I'm "lucky" that it only took 4 years to diagnose... the average is 11 years!! Why?!
Finally, about all the "ologists"... how about a new one... "MyBodyOlogist" 🤣
Oh Eva, I just love this comment - although feel so sad and angry for what you have experienced. And yes that whole narrative about being 'lucky' to get diagnosed...don't start me. It always seems to be women that are impacted too!! And as for the cheese...
Thank you for sharing such a vulnerable piece, Emma. I can relate to so much of it as I have lived with a chronic illness since I was an infant and am currently dealing with pain which, after sooo many tests, we have determined is more psychological than physical. I'm so grateful that I've found a gastroenterologist who looks at her patients holistically because as you've pointed out, that is the exception and not the rule unfortunately.
Dear Cassandra - so sorry for my delay in replying and thank you for your heartfelt comment. I'm so glad you have found someone to look at things holistically for you - I still search for that! The mind/body connection is extraordinary, yet we understand so little about it. To hear this is very encouraging and I really hope it helps you get to the bottom of the pain. It can be so debilitating to live with it year on year. Sending much love x
This great mystery journey - thanks for your vulnerability - and wonderful articulate writing. Sharing this with others - your gift is connection, breaking the isolation of chronic acute disease. Thanks Em! May sea magic be a balm to your body and soul.
Oh emma, so much for you to deal with. I think there’s lots we can do naturally like you juice retreat, I don’t know why doctors can be so dismissive. I was prescribed medication earlier this year for gastritis - stomach pain, heartburn and inflammation. It was interesting that the dr didn’t once mention diet. I read a book and cut out all acidic food/drink as a result, which is hard and makes sense, though it’s so limiting. To be honest I still have bad symptoms but it’s just fascinating how blinkered medics can be! Thanks for sharing this 🙏🏻🧡
Hi Emma, thank you for sharing! I found you via the lovely comment you left on my poem on Sian Cliffords substack! The main thing I think I've learned from my own chronic illness is that I hold space for a lot of things to co exist at the same time.
I've had chronic pain since I was 5 and then chronic illness since I was 22, so for 20 years. At 22 I was first diagnosed with Fibromyalgia, then a few years later Hashimoto's (my main symptom was urticaria), I have histamine responses too and had the usual bizarre list of symptoms that I'm sure you would recognize.. I am also sensitive to most meds and so I was kind of pushed to do everything holistically, though I take the thyroid meds which fortunately have really worked for me!
To your question - the first gp I saw when I was 22 and couldn't walk - didn't believe me, and I still 20 years later have a panic attack before any appointment. Many of my friends also have chronic illness and all of them have additional medical trauma from either dismissal or mistreatment.
Two years ago I was diagnosed Autistic - and it ended up answering all of my why's - I firmly believe all my chronic conditions were triggered from masking my true self for my whole life, and a lifetime of unprocessed feelings - but also knowing AI diseases run in my family.
I have figured out what works for me and note that I also need different things at different times in my life. If I had money I would definitely pile on more of the soothing holistic treatments - I really believe that whatever feels good is good - whatever angle it comes from. I hear my body when it speaks.
I love my acupuncture because it work very well on my inflammation but also because my practitioner is a trauma informed wonderful human who I feel safe to lay down and have a 40 min nap next to! - just being given time is heaven. I love science but as someone who has always been able to speak to the dead - I'll always be open to whatever thing my needs might call out for - and let it evolve.
Wishing you gentle care and kindness as you keep navigating everything :) xo
Dear Louise, I'm so sorry I didn't see this response until now! You wrote the beautiful Mermaid poem? I connected with it so deeply, thank you. I'm so sorry for all your experiences, sadly they are not unfamiliar. I think trauma so often lies at the heart of what we experience - I just don't know how to use that knowledge to really help. I've had therapy, left my job, sold my house, created a new life to allow me to live at the pace I need to, but I am still plagued with CI. Autoimmune also runs in my family (I have pernicious anaemia). Sometimes I think I've figured out what works for me, but then it changes. I'm still discovering the right ways to be. The importance of finding someone who is trauma informed to listen to you cannot be overstated - I think that really is key, and I hope I find that along my way. Sending you much love in your own journey xx
Emma, Thank you for being so open and honest. It seems the doctors these days are so specialised they have become blinded not only to the patient as a person but also the importance of a holistic approach to help our bodies. I remember a retired Consultant friend of mine saying how different disciplines consultants used to see meeting over lunch to discuss things was seen as so important. But now it is all silo working, nobody communicates with each other. I can feel a rant coming on.
I love how you write about your experiences with a raw sense of humour, hope you take that as intended because it is brilliant xx
Thank you so much, yes I love that comment, I’m very touched. Haha I’m never far from a rant but I think I need to just continue expressing these things through my writing. I’m not surprised sadly by what you say about the silo working. It was the same in my previous industry (aviation). It’s so wonderful to connect here with people who understand 💕🙏
Emma, first of all sending you some love and light for what must be an ongoing frustration for you. And thank you for sharing something that can't be easy. We sometimes need traditional medicine to get us to a point where we can start to heal ourselves. From a holistic and spiritual point of view there can be emotions, experiences, trauma being processed or trapped within systems. I could recommend a whole heap of things, but it's your body and you that will know. Talking to your body and letting it speak to you can give you the first step 🙏
Thank you. I found it particularly interesting speaking to the homeopath when she asked me whether I cry (rarely), whether I sweat (not much), whether I'm consipated (often)... I mean apart from it being obvious that I should drink more water (!) there are clearly some things trapped inside me and I believe there is a release waiting. Thank you also for not sending me recommendations in the first instance - I wholeheartedly know that there will be things that are right for me, but you're so right - I need to take it slow, and sometime too much input is overwhelming. I would love your advice later down the line!! Yes there is definitely a place for traditional medicine but I am really focussing on listening to my body, my gut, my heart, my instinct. I look forward to seeing where it will take me. Much love x
Has any doctor mentioned Sjogren’s Syndrome? An autoimmune disorder that can be primary or secondary to others. The mucus membranes get dry: dry eyes, mouth etc. its quite common. Good luck on finding your way through 🤞🏻
Thank you. It’s something I’ve come across in my infinite searches (!) but no one in the medical profession has mentioned it to me. I’ll look it up again now you’ve reminded me 🙏
I would say that is the case Emma, without knowing the ins and outs of everything that you have been through. Yes, it can be overwhelming, it sounds as though you are doing exactly the right thing for you right now. x
A brave and important post Emma. I too was told that 'there is no evidence that diet can make a difference' to my Hashimoto's disease, only to have my antibody levels fall from the 600 range to the 100 range when I gave up gluten and dairy (the normal range being below 60). It's so problematic that there is such a big chasm between western medicine and holistic approaches as I really believe we need both. Holistic medicine got me well again, western medicine allowed me to function for the intervening years while I figured out my path to wellness. I hope to write more about my journey too in time. In the meantime, thanks for sharing yours and helping the rest of us to feel seen.
Thank you Vicki 💕. It's exactly that - I said I would try going dairy free, and he simply said 'don't'. I find the way the western medical world operates in 'absolutes' so counter intuitive. I will find my own way, and I'm sure it will be a blend of both - it's just so exhausting trying to find that blend!! Well done you for taking ownership of your healing, I'm trying to do the same xx
Dear Emma, what a shit show. Though I have a somewhat different constellation of symptoms there was a lot of overlap there. I feel seen and outraged on your behalf.
I had a whole body attack of urticaria at 19 that was like watching those time-lapse photos of flowers blooming. I stood in my living room in my undies, weeping with the pain/itch, while my boyfriend of the time (not yet with benefits, how embarrassing) slathered me with OTC steroid cream so I could bear to dress to go to the doctor's appointment. It happened twice more, less dramatically, then only happened wherever if I had touched cardboard boxes. From my non-medical reading it sure sounds like a mast-cell issue. I've learned over the past two decades that when my skin gets 'grumpy': red, sore, Pityriasis versicolor, odd bumps, pimples or boils, mild dermatitis etc. it means I'm crashing, going too hard and need to 'stop it at once'. I've become a great lover of 'liquid gloves' (Jungle Brolly Hand Shield), and use it as a barrier to keep the world at bay whenever I (used to) garden or do deep cleaning or go in an airplane. You have all my compassion: I would totally be living on juice in Turkey if my skin cleared up as much from it.
When my migraines were at their worst and someone asked why I was "experimenting with woo-woo", I told them if a healer convinced me with even anecdotal evidence that I could get a partial cure if I inserted a pessary while hopping up and down on one foot and whistling the national anthem backward, I would have given it a red hot go. The placebo effect is real, and most people suffering will take a 20% improvement, thank you very much. Especially when delivered with a side of compassion rather than gaslighting.
Your experience with the c**t sounds like a compound of shame and rage that I suspect a lot of us are familiar with. Learned helplessness maybe? I hate that we beat ourselves up about it later with the "why did I put up with that?" well, because of a power imbalance and ableism and sexism and probably a few other -isms as well.
I've tried so many medications in order to be 'a good patient', and out of hope, which is often disappointed. But botox, which I fought against for months, does help. Dammit. Not as much as rest and pacing and medical leave, but enough I keep up the quarterly stabbings.
Thanks for sharing your story, and giving us permission to share some of ours too.
Michelle THANK YOU 🙏. What a wonderful comment - I'm quoting you in an article I'm writing today!! Just brilliant. Yet the placebo effect is real, yes to the power imbalance and ableism and sexism, yes to the pessary and whistling the national anthem backwards! Interesting about botox - that's not something that's even been on my radar. I do take meds, and I need injections for my pernicious anaemia - there's no getting around that, but like you say, it's trying to find the right mix of that vs all the other things. Like you I prioritise rest and pacing, and as for medical leave? Well I've had to leave my career altogether - acknowledging how fortunate I am to have been able to do so. 'A side of compassion rather than gaslighting'. Oh my god - just genius. Thank you for responding with such heart and being so open - I am now going to investigate liquid gloves?!?! Much love and good health to you my darling x
It looks like a healing response to me. The body pulling deep inflammatory heat from the depths to the surface. 👌🏼 Be interesting to hear what a traditional Chinese medicine (TCM) doctor makes of it.
A theory that I’m tracking in my own chronic health journey is that dormant viruses in the body are able to take advantage following periods of shock or chronic stress.
The Epstein Barr virus has been implicated with long covid for instance.
My wife’s shingles flare up under periods of prolonged stress - chickenpox stays in the body for life - this is well accepted even by the NHS bless their misguided cotton socks.
Auto immunity or a highly alert and overworked immune system could surely be a factor if previously dormant viruses keep popping up uninvited.
Anyway it matters a great deal what we eat because it means the difference between feeding and starving these viruses and the neurotoxins they produce as part of their lifecycles. As evidenced with your juice experiment. Well done weaving your way through everyone else’s madness and best of luck with it all 💫🙏🙌🏼
Thanks David - this is so interesting, and I must say I feel great relief at your comment that it sounds like a healing response - although it has been 2 years of this particular manifestation!! And yes - weaving our way through everyone's madness indeed. I totally agree that it matters a great deal what we eat - I'm just baffled that a medical expert can be so dismissive of this. I wish you the best of luck ongoing too 💕🙏
Don’t let my stories pull you from your own intuition but I don’t think 2yrs is that long given the pace our bodies are working at and reduced capacity.
A thriving system would sweat it out in a week perhaps?? I’ve had to stop saunas as although they are great for heath my body wasn’t able to process the pace of the metabolic processes.
Partly why it’s so hard to get well and why we get dismissed because healthy things like saunas and exercise become counter productive and to the passing observer slash specialist consultant 😆 we look like depressed layabouts who just need a swift perking up (with drugs..:which are also counter to our already sluggish and over saturated systems).
Lymph drainage or any massage really should be a boon although not an option for the tender areas of your body bless you.
Colonics clear the system downstream to relive some of the other detox pathways (skin). 👌🏼
I’m not sure doctors even believe what they are saying privately, they’re just trying to win an argument at this point - safe face. I have a doctor friend who doesn’t use laundry detergents and other common chemical products after he ran an experiment on himself where he measured the effects on his hormones (he’s a weightlifter so he was primarily interested in naturally maximising testosterone - he documents it on his YouTube channel).
But yeah the idea that an organism is not affected by it’s environment seems anti-science to me.
My worst 'crash' in the last couple of years was directly after a 'spa' day where I spent the afternoon going between sauna, hot tubs and steam rooms. I have always loved these kinds of treatment, but my body went totally nuts. I'm VERY interested in what you say about the body not being able to process the pace of these metabolic processes. I'd love to understand more about this. I was having lymphatic drainage regularly, but financial constraints did limit that slightly, although I am having my first one in several months tomorrow! I actually find that does wonders, and the therapist I see is incredibly knowledgeable, intuitive and gentle.
I also think a lot about unprocessed trauma. Although I have had a lot of therapy over the years, one thing I was asked this week was whether I sweat (really not much at all), and how often I cry (hardly ever - as I think if I start I may never stop!!). She alerted me to the fact that my body is not using these outlets which I am also pondering...
Yeah that makes sense. There’s a lot of truth to the saying “if it doesn’t kill you it’ll make you stronger.”
The body produces chemical compounds to protect us from harmful agents - heat shock proteins in the case of saunas.
This strange phenomenon where a small dose is medicine and a large dose is poison is known as hormesis and it is true wether we are talking about saunas, exercise, or broccoli (plants have toxic compounds to protect themselves from over grazing animals).
Basically everything that is good for us is trying to kill us 😆
It’s the mild toxic effects that actually produce the benefits - the body up regulates detoxification enzymes and anti inflammatory pathways.
So, we just have to make sure we get the dose right and build up slowly.
Saunas yes, perhaps, but build up very slowly. ✅
Hot tubs and steam rooms on the other hand ✋🏼 I’d be very wary of due to the chlorine which will end up in our bodies - breathing it in through the steam in the case of the steam room (unless they have specific chlorine filters), and of course through our skin in the tub. ❌
So your spa day was like a double whammy of chlorine and heat stress toxicity. 👍🏼😅
☺️You can do self lymph clearance techniques. A surprisingly small amount of skin movement goes a long way. Another case of the body being very efficient I guess. Dry body brushing or just any kind of rubbing will do. Start at the collarbones and the base of the neck and take it from there. Fill your boots! 👢👢
Tears. Yes. Cry all the tears. I think your intuition and your therapists are guiding you well. 🥰
Saunas, crying and colonics all have one thing in common -opening the floodgates.
Flow is perhaps the nature of the cosmos. Everything moving in rhythm. 🌌
Somehow as humans we have the power to disrupt and stifle that flow and yes it will mutate its way through us. Like a potato coming to life in a dark cupboard.
Wanting to cry but stopping ourselves. Wanting to say vulnerable things but stopping ourselves. Needing to shit but stopping ourselves. 😂
I do bodywork, or I did before I got sick, and I could literally feel the blockages in peoples bodies. I’d release some stuff and it would always seek to find a way out of the body....coughing, tears, sometimes screams of rage, very occasionally speaking in tongues....but these could or would get literally swallowed back down once, or if,the client became self conscious about their process.
Journaling and creativity another type of flow...which may also then lead to other types of flow. 🌊💙
“Having made the life changes to allow myself to become well both physically and mentally, my body is perhaps now getting to breathe its sigh of relief” literally as I read this statement, my body breathed the huge sigh of relief ! I simply cannot wait to meet online with you this Friday and chat in person....we have so much to talk about. I knew intuitively medication wasn’t the right purse of action for me to take either. It was as if My body was saying “no, no, no”
I wasn’t permitted to see a neurologist until I took at least 4 different types to their maximum dosage. So I went against my body. And I’m the process my health deteriorated more and more and more. Luckily, I had this level of awareness and once the neurologist confirmed there was no support available to me at all whatsoever and the reason behind the meds not working was because I hadn’t taken them long enough, I really started to tune in and pay attention to what my body was communicating to me all along. I haven’t looked back since. Well, only to give thanks, gratitude and praise to myself for drowning out the noise from all around and going within. My body knew the answers all along.
Amber - thank you so much, and for your voice message!! I cannot wait to chat on Friday - will get the Zoom link over now. It is exactly that feeling of going against your body - that's what I feel in my bones. I know it will also be 'my fault' if I don't take the meds. Look forward to swapping stories! xx
It was my fault the medication I was taking under doctors prescription wasn’t working. Then when I went back and mentioned to the neurologist how fatigued I was alllllll the time (even though by that point I’d managed to break the chronic pain cycle - on my own, based on my own awakening, body’s inner knowing, taking back the reigns of creation for my own life, committing to finding out more and researching about the condition myself, doing what little I could when I could, all with the belief that “I matter. My health matters”), his reply?
“Well, I’m not surprised with all the medication you’re on”
I don't know whether to laugh or cry....!!!
I love that you guys are talking! ✨
😂🤣🥹😭😰😢🥲😅
Oh Em, what a fantastic and brave piece of writing! 💛 I love how you had to restrain the swearing for your mum 😆 I can relate to so much of what you have written here and I want to thank you for being so open and honest about your health struggles... it really helps me feel understood and less alone 🥰
Whilst health professionals are largely fabulous, I feel it is hugely important to speak up for yourself and your body... You are right that you know your body better than anyone... and our instincts are usually right too. We seem to have "learned" to trust professionals without question and not listen to our instincts as much, to sometimes detrimental consequences. I'm not advocating questioning everybody on every little thing, but if you have a strong feeling/instinct about something.. speak up! Or, if you're not quite ready, give yourself more time to think/research and come back.
I can't believe that the dermatologist said there is no link to diet and skin!! 🤣🤣 Was he having a laugh! There is plenty of evidence to suggest otherwise... and one of the first things I get told about my Psoriasis is that what I eat/don't eat can have a huge impact! 🙄 I wish it didn't though, because I MISS CHEEESE!!! 😭😆
I had to endure 3 chest infections, two bouts of pneumonia and 4 courses of antibiotics in one horrific year when I was 34 before they finally agreed to send me for scans... which subsequently revealed a collapsed lung and a tumour the size of a golf ball! "But you're too young for it to be anything like that" they said... Well, clearly not! 😒
After 7 wonderful years cancer free and thriving... Covid hit and my life turned upside down again. It then took almost 4 years of "it must be long Covid" and "you might be perimenopausal" along with an enormous reluctance to investigate further... it turns out my crippling joint pain, fatigue and hair loss were due to an Autoimmune Disease related to my Psoriasis (called Axial SpondyloArthropathy - for anyone who wants to know 😉). Apparently I'm "lucky" that it only took 4 years to diagnose... the average is 11 years!! Why?!
Finally, about all the "ologists"... how about a new one... "MyBodyOlogist" 🤣
Oh Eva, I just love this comment - although feel so sad and angry for what you have experienced. And yes that whole narrative about being 'lucky' to get diagnosed...don't start me. It always seems to be women that are impacted too!! And as for the cheese...
Thank you for sharing such a vulnerable piece, Emma. I can relate to so much of it as I have lived with a chronic illness since I was an infant and am currently dealing with pain which, after sooo many tests, we have determined is more psychological than physical. I'm so grateful that I've found a gastroenterologist who looks at her patients holistically because as you've pointed out, that is the exception and not the rule unfortunately.
Dear Cassandra - so sorry for my delay in replying and thank you for your heartfelt comment. I'm so glad you have found someone to look at things holistically for you - I still search for that! The mind/body connection is extraordinary, yet we understand so little about it. To hear this is very encouraging and I really hope it helps you get to the bottom of the pain. It can be so debilitating to live with it year on year. Sending much love x
This great mystery journey - thanks for your vulnerability - and wonderful articulate writing. Sharing this with others - your gift is connection, breaking the isolation of chronic acute disease. Thanks Em! May sea magic be a balm to your body and soul.
Thank you my lovely friend from the other side of the world, I hope to share stories with you again very soon - I miss it already ❤️
Oh emma, so much for you to deal with. I think there’s lots we can do naturally like you juice retreat, I don’t know why doctors can be so dismissive. I was prescribed medication earlier this year for gastritis - stomach pain, heartburn and inflammation. It was interesting that the dr didn’t once mention diet. I read a book and cut out all acidic food/drink as a result, which is hard and makes sense, though it’s so limiting. To be honest I still have bad symptoms but it’s just fascinating how blinkered medics can be! Thanks for sharing this 🙏🏻🧡
Dear Kate, I have only just seen this comment - it will be so lovely to chat to you about all this and more tomorrow xx
Hi Emma, thank you for sharing! I found you via the lovely comment you left on my poem on Sian Cliffords substack! The main thing I think I've learned from my own chronic illness is that I hold space for a lot of things to co exist at the same time.
I've had chronic pain since I was 5 and then chronic illness since I was 22, so for 20 years. At 22 I was first diagnosed with Fibromyalgia, then a few years later Hashimoto's (my main symptom was urticaria), I have histamine responses too and had the usual bizarre list of symptoms that I'm sure you would recognize.. I am also sensitive to most meds and so I was kind of pushed to do everything holistically, though I take the thyroid meds which fortunately have really worked for me!
To your question - the first gp I saw when I was 22 and couldn't walk - didn't believe me, and I still 20 years later have a panic attack before any appointment. Many of my friends also have chronic illness and all of them have additional medical trauma from either dismissal or mistreatment.
Two years ago I was diagnosed Autistic - and it ended up answering all of my why's - I firmly believe all my chronic conditions were triggered from masking my true self for my whole life, and a lifetime of unprocessed feelings - but also knowing AI diseases run in my family.
I have figured out what works for me and note that I also need different things at different times in my life. If I had money I would definitely pile on more of the soothing holistic treatments - I really believe that whatever feels good is good - whatever angle it comes from. I hear my body when it speaks.
I love my acupuncture because it work very well on my inflammation but also because my practitioner is a trauma informed wonderful human who I feel safe to lay down and have a 40 min nap next to! - just being given time is heaven. I love science but as someone who has always been able to speak to the dead - I'll always be open to whatever thing my needs might call out for - and let it evolve.
Wishing you gentle care and kindness as you keep navigating everything :) xo
Dear Louise, I'm so sorry I didn't see this response until now! You wrote the beautiful Mermaid poem? I connected with it so deeply, thank you. I'm so sorry for all your experiences, sadly they are not unfamiliar. I think trauma so often lies at the heart of what we experience - I just don't know how to use that knowledge to really help. I've had therapy, left my job, sold my house, created a new life to allow me to live at the pace I need to, but I am still plagued with CI. Autoimmune also runs in my family (I have pernicious anaemia). Sometimes I think I've figured out what works for me, but then it changes. I'm still discovering the right ways to be. The importance of finding someone who is trauma informed to listen to you cannot be overstated - I think that really is key, and I hope I find that along my way. Sending you much love in your own journey xx
ps I can't wait to read more of your poetry x
Emma, Thank you for being so open and honest. It seems the doctors these days are so specialised they have become blinded not only to the patient as a person but also the importance of a holistic approach to help our bodies. I remember a retired Consultant friend of mine saying how different disciplines consultants used to see meeting over lunch to discuss things was seen as so important. But now it is all silo working, nobody communicates with each other. I can feel a rant coming on.
I love how you write about your experiences with a raw sense of humour, hope you take that as intended because it is brilliant xx
Thank you so much, yes I love that comment, I’m very touched. Haha I’m never far from a rant but I think I need to just continue expressing these things through my writing. I’m not surprised sadly by what you say about the silo working. It was the same in my previous industry (aviation). It’s so wonderful to connect here with people who understand 💕🙏
Emma, first of all sending you some love and light for what must be an ongoing frustration for you. And thank you for sharing something that can't be easy. We sometimes need traditional medicine to get us to a point where we can start to heal ourselves. From a holistic and spiritual point of view there can be emotions, experiences, trauma being processed or trapped within systems. I could recommend a whole heap of things, but it's your body and you that will know. Talking to your body and letting it speak to you can give you the first step 🙏
Thank you. I found it particularly interesting speaking to the homeopath when she asked me whether I cry (rarely), whether I sweat (not much), whether I'm consipated (often)... I mean apart from it being obvious that I should drink more water (!) there are clearly some things trapped inside me and I believe there is a release waiting. Thank you also for not sending me recommendations in the first instance - I wholeheartedly know that there will be things that are right for me, but you're so right - I need to take it slow, and sometime too much input is overwhelming. I would love your advice later down the line!! Yes there is definitely a place for traditional medicine but I am really focussing on listening to my body, my gut, my heart, my instinct. I look forward to seeing where it will take me. Much love x
Has any doctor mentioned Sjogren’s Syndrome? An autoimmune disorder that can be primary or secondary to others. The mucus membranes get dry: dry eyes, mouth etc. its quite common. Good luck on finding your way through 🤞🏻
Thank you. It’s something I’ve come across in my infinite searches (!) but no one in the medical profession has mentioned it to me. I’ll look it up again now you’ve reminded me 🙏
I would say that is the case Emma, without knowing the ins and outs of everything that you have been through. Yes, it can be overwhelming, it sounds as though you are doing exactly the right thing for you right now. x
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A brave and important post Emma. I too was told that 'there is no evidence that diet can make a difference' to my Hashimoto's disease, only to have my antibody levels fall from the 600 range to the 100 range when I gave up gluten and dairy (the normal range being below 60). It's so problematic that there is such a big chasm between western medicine and holistic approaches as I really believe we need both. Holistic medicine got me well again, western medicine allowed me to function for the intervening years while I figured out my path to wellness. I hope to write more about my journey too in time. In the meantime, thanks for sharing yours and helping the rest of us to feel seen.
Thank you Vicki 💕. It's exactly that - I said I would try going dairy free, and he simply said 'don't'. I find the way the western medical world operates in 'absolutes' so counter intuitive. I will find my own way, and I'm sure it will be a blend of both - it's just so exhausting trying to find that blend!! Well done you for taking ownership of your healing, I'm trying to do the same xx
Dear Emma, what a shit show. Though I have a somewhat different constellation of symptoms there was a lot of overlap there. I feel seen and outraged on your behalf.
I had a whole body attack of urticaria at 19 that was like watching those time-lapse photos of flowers blooming. I stood in my living room in my undies, weeping with the pain/itch, while my boyfriend of the time (not yet with benefits, how embarrassing) slathered me with OTC steroid cream so I could bear to dress to go to the doctor's appointment. It happened twice more, less dramatically, then only happened wherever if I had touched cardboard boxes. From my non-medical reading it sure sounds like a mast-cell issue. I've learned over the past two decades that when my skin gets 'grumpy': red, sore, Pityriasis versicolor, odd bumps, pimples or boils, mild dermatitis etc. it means I'm crashing, going too hard and need to 'stop it at once'. I've become a great lover of 'liquid gloves' (Jungle Brolly Hand Shield), and use it as a barrier to keep the world at bay whenever I (used to) garden or do deep cleaning or go in an airplane. You have all my compassion: I would totally be living on juice in Turkey if my skin cleared up as much from it.
When my migraines were at their worst and someone asked why I was "experimenting with woo-woo", I told them if a healer convinced me with even anecdotal evidence that I could get a partial cure if I inserted a pessary while hopping up and down on one foot and whistling the national anthem backward, I would have given it a red hot go. The placebo effect is real, and most people suffering will take a 20% improvement, thank you very much. Especially when delivered with a side of compassion rather than gaslighting.
Your experience with the c**t sounds like a compound of shame and rage that I suspect a lot of us are familiar with. Learned helplessness maybe? I hate that we beat ourselves up about it later with the "why did I put up with that?" well, because of a power imbalance and ableism and sexism and probably a few other -isms as well.
I've tried so many medications in order to be 'a good patient', and out of hope, which is often disappointed. But botox, which I fought against for months, does help. Dammit. Not as much as rest and pacing and medical leave, but enough I keep up the quarterly stabbings.
Thanks for sharing your story, and giving us permission to share some of ours too.
Michelle THANK YOU 🙏. What a wonderful comment - I'm quoting you in an article I'm writing today!! Just brilliant. Yet the placebo effect is real, yes to the power imbalance and ableism and sexism, yes to the pessary and whistling the national anthem backwards! Interesting about botox - that's not something that's even been on my radar. I do take meds, and I need injections for my pernicious anaemia - there's no getting around that, but like you say, it's trying to find the right mix of that vs all the other things. Like you I prioritise rest and pacing, and as for medical leave? Well I've had to leave my career altogether - acknowledging how fortunate I am to have been able to do so. 'A side of compassion rather than gaslighting'. Oh my god - just genius. Thank you for responding with such heart and being so open - I am now going to investigate liquid gloves?!?! Much love and good health to you my darling x
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Stay strong Emma 🙏🏻 xx
thank you lovely. Today is a good day x
It looks like a healing response to me. The body pulling deep inflammatory heat from the depths to the surface. 👌🏼 Be interesting to hear what a traditional Chinese medicine (TCM) doctor makes of it.
A theory that I’m tracking in my own chronic health journey is that dormant viruses in the body are able to take advantage following periods of shock or chronic stress.
The Epstein Barr virus has been implicated with long covid for instance.
My wife’s shingles flare up under periods of prolonged stress - chickenpox stays in the body for life - this is well accepted even by the NHS bless their misguided cotton socks.
Auto immunity or a highly alert and overworked immune system could surely be a factor if previously dormant viruses keep popping up uninvited.
Anyway it matters a great deal what we eat because it means the difference between feeding and starving these viruses and the neurotoxins they produce as part of their lifecycles. As evidenced with your juice experiment. Well done weaving your way through everyone else’s madness and best of luck with it all 💫🙏🙌🏼
Thanks David - this is so interesting, and I must say I feel great relief at your comment that it sounds like a healing response - although it has been 2 years of this particular manifestation!! And yes - weaving our way through everyone's madness indeed. I totally agree that it matters a great deal what we eat - I'm just baffled that a medical expert can be so dismissive of this. I wish you the best of luck ongoing too 💕🙏
Don’t let my stories pull you from your own intuition but I don’t think 2yrs is that long given the pace our bodies are working at and reduced capacity.
A thriving system would sweat it out in a week perhaps?? I’ve had to stop saunas as although they are great for heath my body wasn’t able to process the pace of the metabolic processes.
Partly why it’s so hard to get well and why we get dismissed because healthy things like saunas and exercise become counter productive and to the passing observer slash specialist consultant 😆 we look like depressed layabouts who just need a swift perking up (with drugs..:which are also counter to our already sluggish and over saturated systems).
Lymph drainage or any massage really should be a boon although not an option for the tender areas of your body bless you.
Colonics clear the system downstream to relive some of the other detox pathways (skin). 👌🏼
I’m not sure doctors even believe what they are saying privately, they’re just trying to win an argument at this point - safe face. I have a doctor friend who doesn’t use laundry detergents and other common chemical products after he ran an experiment on himself where he measured the effects on his hormones (he’s a weightlifter so he was primarily interested in naturally maximising testosterone - he documents it on his YouTube channel).
But yeah the idea that an organism is not affected by it’s environment seems anti-science to me.
What do I know I’m just a yoga teacher. 😆😘
My worst 'crash' in the last couple of years was directly after a 'spa' day where I spent the afternoon going between sauna, hot tubs and steam rooms. I have always loved these kinds of treatment, but my body went totally nuts. I'm VERY interested in what you say about the body not being able to process the pace of these metabolic processes. I'd love to understand more about this. I was having lymphatic drainage regularly, but financial constraints did limit that slightly, although I am having my first one in several months tomorrow! I actually find that does wonders, and the therapist I see is incredibly knowledgeable, intuitive and gentle.
I also think a lot about unprocessed trauma. Although I have had a lot of therapy over the years, one thing I was asked this week was whether I sweat (really not much at all), and how often I cry (hardly ever - as I think if I start I may never stop!!). She alerted me to the fact that my body is not using these outlets which I am also pondering...
Yeah that makes sense. There’s a lot of truth to the saying “if it doesn’t kill you it’ll make you stronger.”
The body produces chemical compounds to protect us from harmful agents - heat shock proteins in the case of saunas.
This strange phenomenon where a small dose is medicine and a large dose is poison is known as hormesis and it is true wether we are talking about saunas, exercise, or broccoli (plants have toxic compounds to protect themselves from over grazing animals).
Basically everything that is good for us is trying to kill us 😆
It’s the mild toxic effects that actually produce the benefits - the body up regulates detoxification enzymes and anti inflammatory pathways.
So, we just have to make sure we get the dose right and build up slowly.
Saunas yes, perhaps, but build up very slowly. ✅
Hot tubs and steam rooms on the other hand ✋🏼 I’d be very wary of due to the chlorine which will end up in our bodies - breathing it in through the steam in the case of the steam room (unless they have specific chlorine filters), and of course through our skin in the tub. ❌
So your spa day was like a double whammy of chlorine and heat stress toxicity. 👍🏼😅
☺️You can do self lymph clearance techniques. A surprisingly small amount of skin movement goes a long way. Another case of the body being very efficient I guess. Dry body brushing or just any kind of rubbing will do. Start at the collarbones and the base of the neck and take it from there. Fill your boots! 👢👢
Tears. Yes. Cry all the tears. I think your intuition and your therapists are guiding you well. 🥰
Saunas, crying and colonics all have one thing in common -opening the floodgates.
Flow is perhaps the nature of the cosmos. Everything moving in rhythm. 🌌
Somehow as humans we have the power to disrupt and stifle that flow and yes it will mutate its way through us. Like a potato coming to life in a dark cupboard.
Wanting to cry but stopping ourselves. Wanting to say vulnerable things but stopping ourselves. Needing to shit but stopping ourselves. 😂
I do bodywork, or I did before I got sick, and I could literally feel the blockages in peoples bodies. I’d release some stuff and it would always seek to find a way out of the body....coughing, tears, sometimes screams of rage, very occasionally speaking in tongues....but these could or would get literally swallowed back down once, or if,the client became self conscious about their process.
Journaling and creativity another type of flow...which may also then lead to other types of flow. 🌊💙