As you may have read in early January my word of the year is COMMUNITY. I would love love love to get to know you all. So I’m sending out this comment thread so you can introduce yourself. I might just send one out here and there with a question for you to get to know you all better.
Listening to each other share about our lived experience is an important feminist and anti-ableist practice. We increase our compassion as we understand each other at a deeper level and we get to see what daily life is like for different people, thereby creating a deeper understanding of diverse experiences. This helps dismantle stereotypes, fosters empathy and compassion and combats loneliness and social isolation.
Today, I’d first of all love to know who you are and then what’s one thing you feel you can do (or stop doing) to make living in your body easier.
So, in the comments below, write down:
What’s your name? And 1-2 sentences to introduce yourself (you can talk about pets, your dream, your biggest value in life, or anything you feel introduces who you are). If you have a website or newlsetter, give us the URL.
What’s your relationship to chronic illness (i.e do you live with chronic illness, are you a carer, or are you an ally who wants to learn more)?
What’s ONE thing you can do (or stop doing) that would make living in your body easier (this one’s for our able-bodied allies too!)?
If you’re too pooped right now, then just tell us your name and say ‘hi’ 😊
I’ll start it off:
Hi! My name is Madelleine. I’m an Aquarius, Virgo rising, gemini tenth house, INFJ and I yearn to live a more creative life where I compose and play my music and write everyday. I’ve lived with ME since 2011 and been mostly bedbound since 2017/18. You can read more about my daily life with severe ME/CFS here. I need to do more ‘active resting’, which means doing something like a guided body scan or just sleeping more throughout the day. I’m so sick and tired of resting and I feel too restless to sleep easily these days, but it would make living in my body less painful.
Hi I’m Michelle. I’ve had ME/CFS since the start of 2022. I regain some energy by just believing myself without the internal arguments first: you can’t be that tired, surely? You can stand up for a bit longer etc. I write about life in the slow lane at https://open.substack.com/pub/armchairrebel
Hi Madelleine! I’m Amy and I have had Long COVID and ME/CFS (and a host of other lettered-syndromes like MCAS and POTS, to name a few) since 2020. I am largely housebound but I am able to get out here and there. I’m a former non-profit executive but I’m now on private disability through my last employer. I write the Substack newsletter The Tonic, all about LC, ME/CFS, and health in general: https://substack.com/@amythetonic
I forgot what else you asked (helloooo, brain fog 😶🌫️). I have been doing more non-sleep deep rest like yoga nidra, and I’m going to be working in earnest on fixing my gut dysbiosis through significant dietary changes.
Hi @Amy, my sister was a nurse and got long covid working in the peak of the pandemic. If you have a favourite piece you think a fellow long covid-er would like to read, I’d love to have the link (for me and my sister) 💕
Hi Sheila, thank you for asking. I’m sorry to hear about your sister. Sadly, the first responders who got sick and stayed sick probably feel the most betrayed by all the systems that should care for them like they cared for their patients.
I think you’re dead right. Hearing about my sister’s journey it’s devastating how badly she’s been treated. Taking away sick pay, relentless meetings with management during her sick leave, a lot of ignorance and lack of support. She’s left nursing, a heartbreaking decision but one she had to make.
I think she’ll like this one, I don’t think she’s an overachiever but I think she’ll related to your upbringing and being a people pleaser! Thank you ☺️
Hello! I'm Clare. I'm queer and live in Dublin with my Italian partner and our two cats. I was diagnosed with Complex PTSD in 2016ish, though my symptoms long predate that. Like so many of us, I've got horror stories about the struggle to get a diagnosis and adequate care but I don't have the energy to get into all of that now. I'm working on slowly building a community of people who want to change the conversation about life after trauma. So many of us go through hard things that change us fundamentally yet our society expects us to pretend as if nothing happened. I write about grief and trauma, but also about the things that have made up my recovery like cooking, reading, travel etc. Mostly I'm just looking for community around topics that can feel so isolating. I'm grateful to have found this space.
Hi Clare! So good to have you here! Urgh, the road to diagnosis and adequate care — so many horror stories! Love that you’re building a community of people who want to change the conversation about life after trauma — that’s so powerful and meaningful.
So I posted this below and realised only now I put it on the wrong thread 🙈😶🌫️ I used to live in Dublin! My family is from Cavan (cue jokes). Just wanted to say hi! 👋
Hello! There are so many good Cavan jokes, but I'm sure you've heard them all. 😉 It's lovely to (virtually) meet you Sheila. Look forward to reading more of your writing! :)
Hi. I’m Jennifer. The only reason I’m writing this is because I’m in too much pain to sleep now. Since I’m in bed much of the time because of my pain. Being in bed and staring at the same walls all day just amplifies my insomnia. So I have to make sure that I move around throughout the day -- even if it is just to the couch or another bed. Just as long as I get a different view helps mentally and physically.
Hi Jennifer! And thank you so much for sharing 💕 It’s so hard to find that balance between rest and activity without crashing and without becoming so restless from stillness and boredome that you crash anyway. Not easy! Good idea with getting a different view! I can use that.
Hi there, I'm Emily. I am a tapestry weaver, artist, writer, Libra, cat-owner, and vintage lover. I have been living with chronic pain from rheumatoid arthritis since 2011. I write about all of the above at https://whatiswovenin.substack.com/ I'm particularly interested in exploring how making art helps folks with chronic illness/chronic pain have the perception of control in our lives when so much feels out of our control. One thing I could do to make living in my body easier is to actually refill my prescriptions on time! I have a weird resistance/anxiety over calling in refills, which sometimes leads to me running out of medications, which leads to stress, which leads to flare ups, etc etc.
Hi Emily! So good to have you here! That’s such an interesting perspective re art and control in life. I definitely think writing songs gives me a sense of control, too. Aargh those damn prescriptions, it’s a nightmare. My dad had to step in and do it all for me because my brain fog just messes it all up, plus I don’t have the energy to call. I can totally feel the resistance/anxiety, I used to have that too when I was doing it myself.
Sometimes I feel so silly about my resistance/anxiety around prescription refills, so it's good to know I'm not alone! I'm so glad you have support from your dad to help out with taking that task off your plate. It's an area I've never thought to ask for help in, but now you've given me the idea! Thank you :)
Yes! So good to ask for help. We have a system and a table with all my stuff and my dad makes my pill boxes once a week and then notes down what is left so he has time to refill prescriptions and call the pharmacy etc. I think, for me, the anxiety comes because I’ve been gaslighted so I have this irrational fear that I have to defend myself or something.
Hey Madelleine, love the newsletter and meditations thank you.
I'm Áine, based in Aotearoa New Zealand (but have moved around a bit). I got long Covid (will be ME/CFS and MCAS as part of that though I haven't sought out those diagnoses clinically) in 2020. So yeah life is defs a constant dance/nogotiation/something with long Covid. I'm doing doctoral studies parttime and am also pretty deep in disability community advocacy things which I love, together with climate, immigration, indigenous justice etc.
It'd be easier to live in my body if I manage to acknowledge that pain/discomfort is always trying to put me in a stress response and that I can try to calm that down rather than thinking it's inevitable and putting it at the back of my mind but then (not-so-mysteriously) not being able to focus on anything else properly lol.
Hi Áine! Wow, what fascinating and important work you are doing! Ah yes, our relationship to pain is so difficult to navigate and it takes a lot of acceptance (and lots of deep breaths) to live with. So glad you’re here 🌸❤️
I also have long covid for the last three years, it comes in waves. I’m glad you’re able to do your studies. I’m growing my Substack which is a good distraction and gives a sense of meaning and building something good!
👋 Hi all! I'm Cassandra and I live on the west coast of Canada. I work from home as a Virtual Assistant and if I'm not working, I'm usually reading! I write Notes from a Kindred Spirit over at cassandrabumpus.substack.com.
I was diagnosed with Cystic Fibrosis as an infant and just turned 31, so I've spent my whole life navigating the healthcare system. I received a double lung transplant in 2016, but still deal with the effects of CF in other areas of my body. A regular exercise routine would be really good for me, even if it's light exercise, so that's something I want to work on this year.
Hi Cassandra! So good to have you here! That’s a long time navigating healthcare systems, you should be granted a PhD. People don’t realise the special knowledge we as patients have. I’m rooting for your exercise routine!
You're so right! I'm sure I could teach a class on self-advocacy and understanding the system by now! As much as you can understand the system, that is. And thank you for rooting for me! I'd say you're off to a good start with your word of the year here on Substack!
Oh, how I wish it was only the lungs! Sinuses and digestive system are 2 big ones, but it can also affect other organs as well like the liver and kidneys.
No you mention digestive system it rings a bell. I feel like I’m one of the many ignorant, I suppose you get a lot of people not knowing? I have endo and so often here ‘it’s just a bad period’ oh if only, it’s a head to toe problem and every day of the month.
It was worse when I was a kid. Back then, most people had never even heard the name, so there's been progress! Yes, there's so much that's misunderstood about many illnesses! And so many misconceptions!
I can only imagine! How many people are affected by cystic fibrosis, would you know? I imagine more than I think.
I try so hard to be open and not lead in with a misconception sentence. But it’s kind of programmed into us right? I think it’s trying to connect but sometimes it’s so bad 😬
Hello! I'm Mara. I am a person living in chronic pain for nearly 10 years. I am on a journey to live a productive and fulfilling life despite pain and use my experiences and expertise in health policy to advocate for the 50 million chronic pain sufferers in the US. I have written about my pain as a relationship or "Pain Marriage". More on that at my newsletter Chronic Pain Chats: https://chronicpainchats.substack.com/. The one thing I can do to manage daily life is keep advocating and sharing my experience with others. This keeps me going and gives me a feeling that my pain has purpose.
Hi Mara! Love love love that you are finding purpose and meaning within a difficult and painful situation! I too find purpose and meaning in sharing and it helps with acceptance too. So glad you’re here 🌸
Hi Mara, as a person also having been living with chronic pain for a decade, I am excited to subscribe to your emails. I loved the Pain Marriage essay. Thank you so much for writing it!
Hi, I’m Barb. I’m a writer living in Chicago with my husband, two dogs, and two cats. I was diagnosed with bipolar disorder in 1995 and have been on disability since 2003. You can read about my first hospitalization here: https://barbnatividad.substack.com/p/misdiagnosed My Substack, called Comedy, Tragedy is about living with this illness, though I strive to make sure it isn’t my whole identity. The most important thing I do to manage this disorder is to take my medication every day at the same times.
Hi Barb! Thank you so much for sharing! Yay dogs and cats! Ooh yes, medication! Even though we have different illness this is most important for me too. So important that my dad organises it all or else I screw it up with my brain fog.
So reading again realise my heads a mess, lol and you’re talking about brain fog 😶🌫️ I mixed up my people. Hello nonetheless and thank you for being kind and saying hi back and not correcting me 🙈
Exploring ADHD diagnosis, dyslexic (and a writer! I’m full of contradictions) and feminist.
I need to stop people pleasing and learn to regulate my emotions more, the two being very interconnected. Them emotions really affect my symptoms (she writes two pain killers deep, wrapped in blankets, water bottled up and sofa bound after a heavy emotional day yesterday!).
Hi Sheila! So good to have you here and thank you for sharing! That sure sounds like a long and difficult journey 🌸 Aah yes, people pleasing and emotional regulation, that’s big.
I’m Tamsin, wannabe writer and poet, old now. Married, 3 adult kids, living in Yorkshire. Neurodivergent. Diagnosed with ME 2011/12, but probably had it mildly from 1984 and then got EBV again and then swine flu in 2005/2008 and now moderate to severe, now also suffering with some Long Covid lung issues. Life is slow. Sometimes delightfully so. Retired teacher, but not worked since 2010. 2 cats, 1 dog, 8 bantams, and a tank full of tropical fish. https://tamchennell.substack.com/
Hi Tamsin! So good to have you here (it seems to me you’re a writer and poet and not a wannabe…). Ooh sounds like you’re surrounded by beautiful and loving animals 🌸
Hi, I’m Kate, I live on the outskirts of London with my teen daughter and sausage-Jack Russell cross Pepper.
I have had long covid for 3 years and just when I think I’m recovered it hits me again. I’m going to be more disciplined about pacing myself (I’m still recovering from Christmas!) and trying to nap more in the day to recharge, and go to bed earlier.
Hi Kate! Lovely to have you here 🌸❤️ I’m so glad you’ve found a creative outlet that also aligns with your skillset. For me, it gives so much purpose and meaning. Good luck on the pacing — pacing is hard.
Elly here. Mother of kittlets, Pan and Poly. Most likely have ME with maybe sarcoidosis and/or fibromyalgia- getting diagnosed hard blooming work. Lost my business this past year due to it. 50% bedbound on average. Learning a new way of being in this world that does involve productivity or money.
Hi again Elly! So good to have you here 🌸 Urgh diagnosis can be a nghtmare. So sorry for all the loss, it’s so heartbreaking and tough — especially to learn new ways of being 💙
This is not quite what you asked, but I have a question about ME that I'm not sure where else to take. Does anyone else get hit with intense fatigue quite suddenly? For years my fatigue has been the kind where it's present from waking, yet I'm having more and more of these episodes. I don't yet have any kind of diagnosis (I was told not to pursue one by a doctor) but I'm thinking of getting one because I'm afraid of getting worse.
It could be PEM — post exertional malaise, which comes when you do more than your body can handle. If you have ME you need to be doing 70% of what you are capable of before crashing. Which country are you in? I would get diagnosed with an ME specialist, you need to know if you have ME so you can get serious and dilligent with your pacing and maybe medication if you have additional symptoms that take up energy. So sorry you’re going through this.
Thank you so much for taking the time and energy to respond. I'm from the UK but currently in Japan, so it will be an extra fun journey. Having said that, all my experience with the Japanese healthcare system so far has been amazing. It was my GP who said not to go forward with an ME diagnosis though he agreed with me that was probably what it is. To be fair to him, this was like 10 years ago and there wasn't any medication and instead it was just GED which was already being criticised. I've heard it's no longer meant to be prescribed, at least in the UK.
Yeah, graded exercise is a big no-go for ME. That’s why it’s so important you get diagnosed so you know what you’re dealing with. With every PEM episode you risk loosing function, so you need to avoid it. That’s partly what landed me in bed… I didn’t know I had ME and I wasn’t aware of how dangerous PEM really is. Not to scare you, just to inform you. When you get back to the UK you could talk to the ME Association and ask where it’s best to be diagnosed, preferably somewhere they use proper diagnostic criteria and some kind of objective test like a hand grip test or something. It’s gotten safer in the UK to have an ME diagnosis since the new NICE guidelines.
Hi, I’m mamie ( my name rhymes with Jamie). I have m.e/ Cfs, fibromyalgia Addison disease. I love being creative, found my joy in crocheting and knitting for years and then even that become to painful so at the moment I’ve gone back to written and doodling with pencils and paint. One thing that is helping me is realising what I’m not good at doing some things. One of these things is putting appointments in the diary. I have brain fog due to my conditions and I’m also dyslexic. We kept finding that I would put things in the diary wrong. Wrong month, right day and time. Write month and day wrong time. You get the picture. I was beating myself up about it one one day and my husband just said we need to just find a different way of doing this. There was no you need to just do… and problem solved. So now he puts appointments in diary or checks I’ve done it right. But it was freeing in his comment of needing to change how we did things it let me off the hook for being the one who needs to change.
Hi Mamie! So good to have you here!! I love that you’re finding tiny ways to be creative 🌸 Bless your husband for not making you wrong but finding a way to help you and do what he is good at. Help can give us so much well-being 🌸❤️
Hi Michelle. I am Janet, a dream psychologist and a complementary care practitioner. There is no one cause of illness, help arriving not only with proper medical care but also with dream work, seeking connections which guide and comfort from the healer inside. As a Virgo with Aquarius rising and Moon in Pisces, I encourage dreamwork to aid in the journey through ailments, chronic and acute. True healing is connecting with the inner healer found in the sanctuary of dreams. I share thoughts on the wide world of dreaming at https://janetpiedilato.substack.com/p/welcome-to-sanctuary-of-alchemical
Hi I’m Laura Lee, I’m a Scorpion ♏️ I’m 57 and I’m married and have 2 adult children and 4 grandchildren. I was diagnosed 8 years ago with Fibromyalgia and then not long after with ME/CFS.I suspect I have had mild ME/CFS since I was around 12. I’ve had to leave my career and stop most of the things I’ve loved to do. So now I’m trying to find less energy using things to love. I’m horrible at pacing,if I wake up with a 1/2 decent day I will sometimes try to suck as much out of it as I can. Which now has left worse. So I’m making my self worse. So I’m need to stop this. So I’ve been online more investigating things to read and to listen to. That how I stumbled on to here. I’m excited to read more of your articles with my reader and listening to more Podcasts something else I’m enjoying. Thank for doing this. 🩷
Hi Laura! So good to have you here 🌸 Pacing is soooooo hard, I can really understand you’re having a difficult time with it. It goes against every fiber of our being to have to stop before our souls are ready to stop — there’s a constant dissonance between soul and body some how, so sorry to hear about all of your losses. I really hope you find a way of pacing that suits you and daily routines to help you out. Lots of support and care 🌸❤️
Hello, I'm Anne. I am the caregiver for my terminally ill husband. (Not the same as a chronic illness, I know.) I work on practicing gratitude and finding joy while living with perpetual grief and ambiguous loss. Focusing on the positives in my life help make living in my body easier. Looking forward to interacting and learning with you all.
Hi Anne, lovely to have you here! It’s always great with the perspective of caregivers 🌸 What a difficult and heart-breaking situation you’re both in. Sending lots of support and care ❤️
Hi, I am.Maria. I read all posts yesterday and I was amazed by the strong sense of community and shared experiences.
I have M.E I was diagnosed in 2003 when I was 20 years. I was told there is no medicine, no cure and maybe I would heal on my own - I felt my world fell apart. Today I have a 15 % permanent disability and my symptoms are what you would call "mild". I have had relapses throughout the 20 years and never have I not worried about my health or battled w trying to keep up w everyone else and not being able to do so. For many years I felt it was easier to let people think I am a bit lazy rather than trying to explain M.E to them.
I would like to be better at listening to the signals my body gives me.. when its time to rest, eat better etc.
Thanks for the opportunity to share and to all of you that write so that others do not need to feel alone 🙂
So glad you’re here Maria! ❤️🌸 Living in the ‘real world’ with this illness and no one really getting it is really difficult! ‘Mild’ (I don’t think it’s mild) ME comes with a certain set of challenges as you are seen as able-bodied by people, but you are not at all — and no one really gets it. Being made invisible like and not have your disability acknowledged is difficult to navigate in. That’s what I experienced when I had mild ME.
Thank you so much for recognising that there is nothing mild about "mild" M.E. The symptoms are always there and there is no day where I don't worry about some symptom such as a strange feeling in the head / brain, sore throats, strange headaches etc. And still I feel I owe it to my younger self to be grateful so I try to be when I can (on bad days I look at LinkedIn profiles of people my age and I compare myself w others and mourn the lost years I have had in my 20s - very toxic but we are only humans).
Ah yes those comparisons are so heartbreaking… I still do it too, and then I get a spiritual hangover and need to wean myself off it again… urgh… it’s not easy.
Hi! I’m Cheryl and I’m a retired elementary teacher, former freelance journalist, current dog mom, community volunteer, and writer working on a picture book for all ages and getting ready to jump in with my own Substack.
I have Advanced Sjogren’s Syndrome, Lupus, Fibromyalgia, ADHD, asthma, and assorted other chronic health conditions that jumped on board for the ride. Oh, and I’m an INFP, Pisces, and Highly Sensitive. I love connecting with people who understand the chronic illness life - the good and the not so good.
Welcome Cheryl!! So good to have you here 🌻 Wow, a picture book, that sounds amazing. And do remember to send us your link to your Substack once it’s up.
Hi y'all! I'm Yvonne. Since the summer of 2022, I've been living with Long Covid/ME in Vienna, Austria, where I'm from (Austria, not Vienna). BC (Before Covid) I worked in academia and literature and NPOs, would travel a lot, go on long-distance hikes. Now I've started dedicating time to writing more regularly, I finally got two feline roomies, and I am living a mostly house-bound life distilled to its essence. The ongoing process of "decluttering" my life is painful and exhausting and heartbreaking, yet the people who are in my life are IN it; the activities I can do, I enjoy.
One thing I've found that helps me is taking a little bit of extra time in the morning and night for my skin care. Usually sitting, I massage facial oils in and try to pay attention to the sense of touch, to the smell. It helps me get back into my body when I worry too much; it's a little luxury that brings essential moments of bliss before and after these long days.
Hi Yvonne! Welcome! So glad to have you here 🌸❤️ It’s so heartbreaking and rough to declutter your life from a busy life to mostly housebound. I’m so glad you’ve found writing and things you enjoy, despite the grif. Oh wow, what a fantastic bit of self-care — facial massage, that sounds like essential self-care… although I’m sure it feels luxurious too.
Yeah, since showering and other related activities are often too exhausting to bring a much-needed moment of pampering, I have found my facial care to hit the spot. Just taking a few extra seconds to luxuriate in the smell and touch makes such a difference for me 😊
Hi! Dave here. 2-dimensional Zoom head by day and weekend writer of The Unremarkable Brain here on Substack (www.unremarkablebrain.com) where I write about living with and thriving despite epilepsy, thanks in part to the ketogenic diet. One thing I could do to make living in my body easier? Hmm. Get up the nerve and schedule the hip replacement therapy that I’ve been putting off for years!
Hi Dave! So lovely to have you here 🌸 Yay, so glad the ketogenic diet works for you and you get to thrive despite illness, that makes me happy. Hip replacement, yikes! Sounds tough. Hope you muster the nerve to get it done if it can help you.
i'm christa (they/she.) INFJ/P, depending on the day ;) libra sun, scorpio moon and leo rising. i have a newsletter also writing about being a fat, disabled, queer, polyam POC and relational care at https://isthiswhatyouwant.org. I live in Brooklyn with my spouse and our two dogs. I love dancing in my underwear, talking for hours, reading, singing, and boxing. I have a host of ailments, including PCOS, cPTSD, ADHD and chronic pelvic pain which I suspect is endo (though not been diagnosed yet.) I found this newsletter while searching for more community, and one of the things I do to make my body more easeful is just listening to it and breathing with it. Grateful to have found this space and can't wait to engage more.
Hi I’m Michelle. I’ve had ME/CFS since the start of 2022. I regain some energy by just believing myself without the internal arguments first: you can’t be that tired, surely? You can stand up for a bit longer etc. I write about life in the slow lane at https://open.substack.com/pub/armchairrebel
Hi Michelle! Thank you for sharing 💕🥰 Ooooh those internal arguments, they take up too much energy and are hard to notice!
Thank you for witnessing. I witness you with great attention and awe 💗
❤️❤️❤️
Hi Madelleine! I’m Amy and I have had Long COVID and ME/CFS (and a host of other lettered-syndromes like MCAS and POTS, to name a few) since 2020. I am largely housebound but I am able to get out here and there. I’m a former non-profit executive but I’m now on private disability through my last employer. I write the Substack newsletter The Tonic, all about LC, ME/CFS, and health in general: https://substack.com/@amythetonic
I forgot what else you asked (helloooo, brain fog 😶🌫️). I have been doing more non-sleep deep rest like yoga nidra, and I’m going to be working in earnest on fixing my gut dysbiosis through significant dietary changes.
Hi Amy! So glad to have you here 🌸 It’s exactly yoga nidras I need to get back to doing again more, and good luck with your gut!!
Hi @Amy, my sister was a nurse and got long covid working in the peak of the pandemic. If you have a favourite piece you think a fellow long covid-er would like to read, I’d love to have the link (for me and my sister) 💕
Hi Sheila, thank you for asking. I’m sorry to hear about your sister. Sadly, the first responders who got sick and stayed sick probably feel the most betrayed by all the systems that should care for them like they cared for their patients.
Without knowing more about what she may be experiencing, here’s one that might resonate with her: https://open.substack.com/pub/amythetonic/p/say-hello-to-saul-my-overachiever?r=o3zsi&utm_medium=ios&utm_campaign=post
Hi Amy,
I think you’re dead right. Hearing about my sister’s journey it’s devastating how badly she’s been treated. Taking away sick pay, relentless meetings with management during her sick leave, a lot of ignorance and lack of support. She’s left nursing, a heartbreaking decision but one she had to make.
I think she’ll like this one, I don’t think she’s an overachiever but I think she’ll related to your upbringing and being a people pleaser! Thank you ☺️
Hello! I'm Clare. I'm queer and live in Dublin with my Italian partner and our two cats. I was diagnosed with Complex PTSD in 2016ish, though my symptoms long predate that. Like so many of us, I've got horror stories about the struggle to get a diagnosis and adequate care but I don't have the energy to get into all of that now. I'm working on slowly building a community of people who want to change the conversation about life after trauma. So many of us go through hard things that change us fundamentally yet our society expects us to pretend as if nothing happened. I write about grief and trauma, but also about the things that have made up my recovery like cooking, reading, travel etc. Mostly I'm just looking for community around topics that can feel so isolating. I'm grateful to have found this space.
P.S. almost forgot the url: https://clareegan.substack.com/
Hi Clare! So good to have you here! Urgh, the road to diagnosis and adequate care — so many horror stories! Love that you’re building a community of people who want to change the conversation about life after trauma — that’s so powerful and meaningful.
Thank you!
So I posted this below and realised only now I put it on the wrong thread 🙈😶🌫️ I used to live in Dublin! My family is from Cavan (cue jokes). Just wanted to say hi! 👋
Hello! There are so many good Cavan jokes, but I'm sure you've heard them all. 😉 It's lovely to (virtually) meet you Sheila. Look forward to reading more of your writing! :)
Give me your favourite, I’m sure I’ve heard it but I enjoy the creativity of each joke 🤣 It’s lovely to meet you (virtually) too! 💕
Hi. I’m Jennifer. The only reason I’m writing this is because I’m in too much pain to sleep now. Since I’m in bed much of the time because of my pain. Being in bed and staring at the same walls all day just amplifies my insomnia. So I have to make sure that I move around throughout the day -- even if it is just to the couch or another bed. Just as long as I get a different view helps mentally and physically.
Hi Jennifer! And thank you so much for sharing 💕 It’s so hard to find that balance between rest and activity without crashing and without becoming so restless from stillness and boredome that you crash anyway. Not easy! Good idea with getting a different view! I can use that.
Hi, I am Chris and would love to have the energy to contribute to this!
So glad you chose to spend precious energy to say hi! 🥰💕
Hi there, I'm Emily. I am a tapestry weaver, artist, writer, Libra, cat-owner, and vintage lover. I have been living with chronic pain from rheumatoid arthritis since 2011. I write about all of the above at https://whatiswovenin.substack.com/ I'm particularly interested in exploring how making art helps folks with chronic illness/chronic pain have the perception of control in our lives when so much feels out of our control. One thing I could do to make living in my body easier is to actually refill my prescriptions on time! I have a weird resistance/anxiety over calling in refills, which sometimes leads to me running out of medications, which leads to stress, which leads to flare ups, etc etc.
Hi Emily! So good to have you here! That’s such an interesting perspective re art and control in life. I definitely think writing songs gives me a sense of control, too. Aargh those damn prescriptions, it’s a nightmare. My dad had to step in and do it all for me because my brain fog just messes it all up, plus I don’t have the energy to call. I can totally feel the resistance/anxiety, I used to have that too when I was doing it myself.
Sometimes I feel so silly about my resistance/anxiety around prescription refills, so it's good to know I'm not alone! I'm so glad you have support from your dad to help out with taking that task off your plate. It's an area I've never thought to ask for help in, but now you've given me the idea! Thank you :)
Yes! So good to ask for help. We have a system and a table with all my stuff and my dad makes my pill boxes once a week and then notes down what is left so he has time to refill prescriptions and call the pharmacy etc. I think, for me, the anxiety comes because I’ve been gaslighted so I have this irrational fear that I have to defend myself or something.
Hey Madelleine, love the newsletter and meditations thank you.
I'm Áine, based in Aotearoa New Zealand (but have moved around a bit). I got long Covid (will be ME/CFS and MCAS as part of that though I haven't sought out those diagnoses clinically) in 2020. So yeah life is defs a constant dance/nogotiation/something with long Covid. I'm doing doctoral studies parttime and am also pretty deep in disability community advocacy things which I love, together with climate, immigration, indigenous justice etc.
You can see some of my stuff here x
https://linktr.ee/ainekc/
It'd be easier to live in my body if I manage to acknowledge that pain/discomfort is always trying to put me in a stress response and that I can try to calm that down rather than thinking it's inevitable and putting it at the back of my mind but then (not-so-mysteriously) not being able to focus on anything else properly lol.
Hi Áine! Wow, what fascinating and important work you are doing! Ah yes, our relationship to pain is so difficult to navigate and it takes a lot of acceptance (and lots of deep breaths) to live with. So glad you’re here 🌸❤️
I also have long covid for the last three years, it comes in waves. I’m glad you’re able to do your studies. I’m growing my Substack which is a good distraction and gives a sense of meaning and building something good!
👋 Hi all! I'm Cassandra and I live on the west coast of Canada. I work from home as a Virtual Assistant and if I'm not working, I'm usually reading! I write Notes from a Kindred Spirit over at cassandrabumpus.substack.com.
I was diagnosed with Cystic Fibrosis as an infant and just turned 31, so I've spent my whole life navigating the healthcare system. I received a double lung transplant in 2016, but still deal with the effects of CF in other areas of my body. A regular exercise routine would be really good for me, even if it's light exercise, so that's something I want to work on this year.
Oops, my link didn't work! https://cassandrabumpus.substack.com/
Hi Cassandra! So good to have you here! That’s a long time navigating healthcare systems, you should be granted a PhD. People don’t realise the special knowledge we as patients have. I’m rooting for your exercise routine!
You're so right! I'm sure I could teach a class on self-advocacy and understanding the system by now! As much as you can understand the system, that is. And thank you for rooting for me! I'd say you're off to a good start with your word of the year here on Substack!
❤️🌸❤️
I learned something new about cystic fibrosis, I didn’t know it was a full body disease. Thank you for educating me 💕
Oh, how I wish it was only the lungs! Sinuses and digestive system are 2 big ones, but it can also affect other organs as well like the liver and kidneys.
No you mention digestive system it rings a bell. I feel like I’m one of the many ignorant, I suppose you get a lot of people not knowing? I have endo and so often here ‘it’s just a bad period’ oh if only, it’s a head to toe problem and every day of the month.
It was worse when I was a kid. Back then, most people had never even heard the name, so there's been progress! Yes, there's so much that's misunderstood about many illnesses! And so many misconceptions!
I can only imagine! How many people are affected by cystic fibrosis, would you know? I imagine more than I think.
I try so hard to be open and not lead in with a misconception sentence. But it’s kind of programmed into us right? I think it’s trying to connect but sometimes it’s so bad 😬
It is considered a rare disease, so they say a little less than 5,000 people in Canada and about 40,000 in the US.
Hello! I'm Mara. I am a person living in chronic pain for nearly 10 years. I am on a journey to live a productive and fulfilling life despite pain and use my experiences and expertise in health policy to advocate for the 50 million chronic pain sufferers in the US. I have written about my pain as a relationship or "Pain Marriage". More on that at my newsletter Chronic Pain Chats: https://chronicpainchats.substack.com/. The one thing I can do to manage daily life is keep advocating and sharing my experience with others. This keeps me going and gives me a feeling that my pain has purpose.
Hi Mara! Love love love that you are finding purpose and meaning within a difficult and painful situation! I too find purpose and meaning in sharing and it helps with acceptance too. So glad you’re here 🌸
Hi Mara, as a person also having been living with chronic pain for a decade, I am excited to subscribe to your emails. I loved the Pain Marriage essay. Thank you so much for writing it!
So glad you’re connecting 🌸❤️
Thank you Emily!
Hi, I’m Barb. I’m a writer living in Chicago with my husband, two dogs, and two cats. I was diagnosed with bipolar disorder in 1995 and have been on disability since 2003. You can read about my first hospitalization here: https://barbnatividad.substack.com/p/misdiagnosed My Substack, called Comedy, Tragedy is about living with this illness, though I strive to make sure it isn’t my whole identity. The most important thing I do to manage this disorder is to take my medication every day at the same times.
Hi Barb! Thank you so much for sharing! Yay dogs and cats! Ooh yes, medication! Even though we have different illness this is most important for me too. So important that my dad organises it all or else I screw it up with my brain fog.
My husband organizes mine!
Thank goodness for our loved ones 🌸
Indeed!
Hello @Barb, used to live in Dublin! My family is from Cavan (cue jokes). Just wanted to say hi! 👋
Hi!
So reading again realise my heads a mess, lol and you’re talking about brain fog 😶🌫️ I mixed up my people. Hello nonetheless and thank you for being kind and saying hi back and not correcting me 🙈
It’s okay! 😊
Hehe 🤭
☺️☺️☺️
Hello all! It’s an absolute pleasure reading all these introductions and knowing a little about the community you’ve built Madeline 💕
I’m English Irish living in Spain and a woman of the world having lived in 5 different countries and travelled many more.
I have the holy trinity of infertility of endometriosis (the one that gives me my chronic illness), adenymosis and fibroids. I’ve recently found out I can’t have children after a long and difficult journey, which you can read about here: https://open.substack.com/pub/sheilaiswriting/p/the-week-i-heard-my-biggest-fear?r=2uqaml&utm_medium=ios&utm_campaign=post
(Warning it’s a heavy read).
Exploring ADHD diagnosis, dyslexic (and a writer! I’m full of contradictions) and feminist.
I need to stop people pleasing and learn to regulate my emotions more, the two being very interconnected. Them emotions really affect my symptoms (she writes two pain killers deep, wrapped in blankets, water bottled up and sofa bound after a heavy emotional day yesterday!).
Wow a lot came out!
Hi Sheila! So good to have you here and thank you for sharing! That sure sounds like a long and difficult journey 🌸 Aah yes, people pleasing and emotional regulation, that’s big.
Thank you for creating this lovely community and sharing your experience.
Oh yes the people pleasing and emotional regulation is a big one! 💕
I’m Tamsin, wannabe writer and poet, old now. Married, 3 adult kids, living in Yorkshire. Neurodivergent. Diagnosed with ME 2011/12, but probably had it mildly from 1984 and then got EBV again and then swine flu in 2005/2008 and now moderate to severe, now also suffering with some Long Covid lung issues. Life is slow. Sometimes delightfully so. Retired teacher, but not worked since 2010. 2 cats, 1 dog, 8 bantams, and a tank full of tropical fish. https://tamchennell.substack.com/
Hi Tamsin! So good to have you here (it seems to me you’re a writer and poet and not a wannabe…). Ooh sounds like you’re surrounded by beautiful and loving animals 🌸
Hi, I’m Kate, I live on the outskirts of London with my teen daughter and sausage-Jack Russell cross Pepper.
I have had long covid for 3 years and just when I think I’m recovered it hits me again. I’m going to be more disciplined about pacing myself (I’m still recovering from Christmas!) and trying to nap more in the day to recharge, and go to bed earlier.
I’m grateful to have found Substack where I’m growing my readership of Letters from Therapy here. https://lettersfromtherapy.substack.com
I was a therapist for a long time but had to give up. ✨💛✨
Hi Kate! Lovely to have you here 🌸❤️ I’m so glad you’ve found a creative outlet that also aligns with your skillset. For me, it gives so much purpose and meaning. Good luck on the pacing — pacing is hard.
Elly here. Mother of kittlets, Pan and Poly. Most likely have ME with maybe sarcoidosis and/or fibromyalgia- getting diagnosed hard blooming work. Lost my business this past year due to it. 50% bedbound on average. Learning a new way of being in this world that does involve productivity or money.
Hi again Elly! So good to have you here 🌸 Urgh diagnosis can be a nghtmare. So sorry for all the loss, it’s so heartbreaking and tough — especially to learn new ways of being 💙
This is not quite what you asked, but I have a question about ME that I'm not sure where else to take. Does anyone else get hit with intense fatigue quite suddenly? For years my fatigue has been the kind where it's present from waking, yet I'm having more and more of these episodes. I don't yet have any kind of diagnosis (I was told not to pursue one by a doctor) but I'm thinking of getting one because I'm afraid of getting worse.
It could be PEM — post exertional malaise, which comes when you do more than your body can handle. If you have ME you need to be doing 70% of what you are capable of before crashing. Which country are you in? I would get diagnosed with an ME specialist, you need to know if you have ME so you can get serious and dilligent with your pacing and maybe medication if you have additional symptoms that take up energy. So sorry you’re going through this.
Thank you so much for taking the time and energy to respond. I'm from the UK but currently in Japan, so it will be an extra fun journey. Having said that, all my experience with the Japanese healthcare system so far has been amazing. It was my GP who said not to go forward with an ME diagnosis though he agreed with me that was probably what it is. To be fair to him, this was like 10 years ago and there wasn't any medication and instead it was just GED which was already being criticised. I've heard it's no longer meant to be prescribed, at least in the UK.
Yeah, graded exercise is a big no-go for ME. That’s why it’s so important you get diagnosed so you know what you’re dealing with. With every PEM episode you risk loosing function, so you need to avoid it. That’s partly what landed me in bed… I didn’t know I had ME and I wasn’t aware of how dangerous PEM really is. Not to scare you, just to inform you. When you get back to the UK you could talk to the ME Association and ask where it’s best to be diagnosed, preferably somewhere they use proper diagnostic criteria and some kind of objective test like a hand grip test or something. It’s gotten safer in the UK to have an ME diagnosis since the new NICE guidelines.
Thank you
Hi, I’m mamie ( my name rhymes with Jamie). I have m.e/ Cfs, fibromyalgia Addison disease. I love being creative, found my joy in crocheting and knitting for years and then even that become to painful so at the moment I’ve gone back to written and doodling with pencils and paint. One thing that is helping me is realising what I’m not good at doing some things. One of these things is putting appointments in the diary. I have brain fog due to my conditions and I’m also dyslexic. We kept finding that I would put things in the diary wrong. Wrong month, right day and time. Write month and day wrong time. You get the picture. I was beating myself up about it one one day and my husband just said we need to just find a different way of doing this. There was no you need to just do… and problem solved. So now he puts appointments in diary or checks I’ve done it right. But it was freeing in his comment of needing to change how we did things it let me off the hook for being the one who needs to change.
Hi Mamie! So good to have you here!! I love that you’re finding tiny ways to be creative 🌸 Bless your husband for not making you wrong but finding a way to help you and do what he is good at. Help can give us so much well-being 🌸❤️
Hi Michelle. I am Janet, a dream psychologist and a complementary care practitioner. There is no one cause of illness, help arriving not only with proper medical care but also with dream work, seeking connections which guide and comfort from the healer inside. As a Virgo with Aquarius rising and Moon in Pisces, I encourage dreamwork to aid in the journey through ailments, chronic and acute. True healing is connecting with the inner healer found in the sanctuary of dreams. I share thoughts on the wide world of dreaming at https://janetpiedilato.substack.com/p/welcome-to-sanctuary-of-alchemical
Hi Janet! Welcome, so glad to have you here! Wow, your work sounds fascinating 🌸
Hi I’m Laura Lee, I’m a Scorpion ♏️ I’m 57 and I’m married and have 2 adult children and 4 grandchildren. I was diagnosed 8 years ago with Fibromyalgia and then not long after with ME/CFS.I suspect I have had mild ME/CFS since I was around 12. I’ve had to leave my career and stop most of the things I’ve loved to do. So now I’m trying to find less energy using things to love. I’m horrible at pacing,if I wake up with a 1/2 decent day I will sometimes try to suck as much out of it as I can. Which now has left worse. So I’m making my self worse. So I’m need to stop this. So I’ve been online more investigating things to read and to listen to. That how I stumbled on to here. I’m excited to read more of your articles with my reader and listening to more Podcasts something else I’m enjoying. Thank for doing this. 🩷
Hi Laura! So good to have you here 🌸 Pacing is soooooo hard, I can really understand you’re having a difficult time with it. It goes against every fiber of our being to have to stop before our souls are ready to stop — there’s a constant dissonance between soul and body some how, so sorry to hear about all of your losses. I really hope you find a way of pacing that suits you and daily routines to help you out. Lots of support and care 🌸❤️
Hello, I'm Anne. I am the caregiver for my terminally ill husband. (Not the same as a chronic illness, I know.) I work on practicing gratitude and finding joy while living with perpetual grief and ambiguous loss. Focusing on the positives in my life help make living in my body easier. Looking forward to interacting and learning with you all.
Hi Anne, lovely to have you here! It’s always great with the perspective of caregivers 🌸 What a difficult and heart-breaking situation you’re both in. Sending lots of support and care ❤️
Hi, I am.Maria. I read all posts yesterday and I was amazed by the strong sense of community and shared experiences.
I have M.E I was diagnosed in 2003 when I was 20 years. I was told there is no medicine, no cure and maybe I would heal on my own - I felt my world fell apart. Today I have a 15 % permanent disability and my symptoms are what you would call "mild". I have had relapses throughout the 20 years and never have I not worried about my health or battled w trying to keep up w everyone else and not being able to do so. For many years I felt it was easier to let people think I am a bit lazy rather than trying to explain M.E to them.
I would like to be better at listening to the signals my body gives me.. when its time to rest, eat better etc.
Thanks for the opportunity to share and to all of you that write so that others do not need to feel alone 🙂
So glad you’re here Maria! ❤️🌸 Living in the ‘real world’ with this illness and no one really getting it is really difficult! ‘Mild’ (I don’t think it’s mild) ME comes with a certain set of challenges as you are seen as able-bodied by people, but you are not at all — and no one really gets it. Being made invisible like and not have your disability acknowledged is difficult to navigate in. That’s what I experienced when I had mild ME.
Thank you so much for recognising that there is nothing mild about "mild" M.E. The symptoms are always there and there is no day where I don't worry about some symptom such as a strange feeling in the head / brain, sore throats, strange headaches etc. And still I feel I owe it to my younger self to be grateful so I try to be when I can (on bad days I look at LinkedIn profiles of people my age and I compare myself w others and mourn the lost years I have had in my 20s - very toxic but we are only humans).
Ah yes those comparisons are so heartbreaking… I still do it too, and then I get a spiritual hangover and need to wean myself off it again… urgh… it’s not easy.
Hi! I’m Cheryl and I’m a retired elementary teacher, former freelance journalist, current dog mom, community volunteer, and writer working on a picture book for all ages and getting ready to jump in with my own Substack.
I have Advanced Sjogren’s Syndrome, Lupus, Fibromyalgia, ADHD, asthma, and assorted other chronic health conditions that jumped on board for the ride. Oh, and I’m an INFP, Pisces, and Highly Sensitive. I love connecting with people who understand the chronic illness life - the good and the not so good.
Welcome Cheryl!! So good to have you here 🌻 Wow, a picture book, that sounds amazing. And do remember to send us your link to your Substack once it’s up.
Hi y'all! I'm Yvonne. Since the summer of 2022, I've been living with Long Covid/ME in Vienna, Austria, where I'm from (Austria, not Vienna). BC (Before Covid) I worked in academia and literature and NPOs, would travel a lot, go on long-distance hikes. Now I've started dedicating time to writing more regularly, I finally got two feline roomies, and I am living a mostly house-bound life distilled to its essence. The ongoing process of "decluttering" my life is painful and exhausting and heartbreaking, yet the people who are in my life are IN it; the activities I can do, I enjoy.
One thing I've found that helps me is taking a little bit of extra time in the morning and night for my skin care. Usually sitting, I massage facial oils in and try to pay attention to the sense of touch, to the smell. It helps me get back into my body when I worry too much; it's a little luxury that brings essential moments of bliss before and after these long days.
I also write about my experience with Long Covid & depresion & neurodivergence: https://writewhatremains.substack.com/
Hi Yvonne! Welcome! So glad to have you here 🌸❤️ It’s so heartbreaking and rough to declutter your life from a busy life to mostly housebound. I’m so glad you’ve found writing and things you enjoy, despite the grif. Oh wow, what a fantastic bit of self-care — facial massage, that sounds like essential self-care… although I’m sure it feels luxurious too.
Yeah, since showering and other related activities are often too exhausting to bring a much-needed moment of pampering, I have found my facial care to hit the spot. Just taking a few extra seconds to luxuriate in the smell and touch makes such a difference for me 😊
Hi! Dave here. 2-dimensional Zoom head by day and weekend writer of The Unremarkable Brain here on Substack (www.unremarkablebrain.com) where I write about living with and thriving despite epilepsy, thanks in part to the ketogenic diet. One thing I could do to make living in my body easier? Hmm. Get up the nerve and schedule the hip replacement therapy that I’ve been putting off for years!
Hi Dave! So lovely to have you here 🌸 Yay, so glad the ketogenic diet works for you and you get to thrive despite illness, that makes me happy. Hip replacement, yikes! Sounds tough. Hope you muster the nerve to get it done if it can help you.
hi all!
i'm christa (they/she.) INFJ/P, depending on the day ;) libra sun, scorpio moon and leo rising. i have a newsletter also writing about being a fat, disabled, queer, polyam POC and relational care at https://isthiswhatyouwant.org. I live in Brooklyn with my spouse and our two dogs. I love dancing in my underwear, talking for hours, reading, singing, and boxing. I have a host of ailments, including PCOS, cPTSD, ADHD and chronic pelvic pain which I suspect is endo (though not been diagnosed yet.) I found this newsletter while searching for more community, and one of the things I do to make my body more easeful is just listening to it and breathing with it. Grateful to have found this space and can't wait to engage more.
Hi Christa! So glad you’re here! Yay, a fellow INFJ. Thank you for sharing a piece of yourself here 🌸
Thanks for having me! So nice to have other spoonies to commiserate, write, and build community with