I cannot be creative in the same way as before my illness turned severe. While I have found ways to be creative without using too much brainpower, I grieve the loss of my inner world.
Thank you Madelleine, for giving me the opportunity to have an insight into your world. And for your guided meditation the other day, reminding me to "appreciate " the many things I have in my life... however small or simple they may be.
Thanks for this post! I struggle with creativity when the day to day work writing responsibilities are technical, sucking the creative juices out of me! I find as I write my manuscript about my chronic journey that leaving my normal work space is essential. Music helps me too!
I totally get this. As well as living with severe ME & FMS +. I’ve been titrating off gabapentin for 17 months. It feels like I can’t access parts of my brain, like imagination or synthesizing information. When I try, it feels like heavy steel doors slam down on all sides. Often, I’m very literal which makes for funny conversations. Mostly I feel dull-minded and flat, unemotive.
I’m a poet so my thing is to write a poetic line, image or metaphor a day. It keeps me trying to think creatively, which brings joy to my mostly bedridden life at the moment. Revising a poem is difficult because it takes higher levels of thinking. Often my line these days is just a brief description of how I feel.
Recently I’ve started microdosing to help with the titration and it’s starting to allow me to access more of my mind again & to feel more like myself, instead of a zombie in a coma.
Thank you so much for sharing your experience! I love that you try to write a line a day. I do that too, although sometimes it may just be two words. Interesting re micro-dosing! It sounds like it’s working? No side-effects?
Oof I feel this in my soul. Creativity is definitely one of the first thing to go with the energy as your brain moves into “what is practical to survive” mode. Never mind how art and creativity feeds our soul and heart and keeps us going with hope. Once it leaves the world gets dark and our hearts beat only to get us through the day. Devastating. I hope the change in meds helps. X
“… brain moves into “what is practical to survive””: this is so true! Hadn’t thought of it like that. But yeah, what about our spiritual survival? I too hope the meds will help!
It’s tough isn’t it? How we cope I don’t know. There have been days with me as bad as yours. When my brain just doesn’t work. And I hate it so much. There have been years where I couldn’t do anything creative, not even copying, it’s such a loss. I wrote a poem about climbing the stairs hubby read it called it dramatic - I sort of understand why he said that cos it’s a poem, but also no, not really the poem was the truth, how it really feels and I think after 15 years he still struggles to truly understand the struggles physical and mental. And he’s one of the good ones.
Thank you so much for sharing ❤️🌸 And yes, it’s not that people are bad it’s just that there is so little awareness about chronic illness. I hopeyou share your poem one day, you can share it here if you want. I hope you continue writing the truth 🥰
Thanks Madelleine, I am so glad you have written about this because it's something that affects me too, and I grieve so much for it.
I always was highly imaginative, I thought in images, I saw in my minds eye in images and now I just can't. It's like I have lost my imagination and it's horrible. It's something I just took for granted before ME.
My previous carers, before I became severe with ME around 10 years ago revolved around using my imagination, art and play, I feel like I have lost a huge part of me and a part of me which bought me so much joy and enriched my life.
I previously loved to paint and draw, particularly imaginative pieces, children's illustrations. Now I can't. I think some medications really affect this too. I also used to be a very spiritual person, it's like I've completely lost access to this part of me too.
What I have found though is that I can still draw from observation and I have taken up realism drawing of wildlife, from my bed. I get so much joy from this particularly because when I am working on a piece for so long, I feel so connected and close to the animal I am drawing, so deeply moved by their beauty and this means so much to me, with not being able to get out in the wild and connect with nature any more.
I have just finished a red squirrel yesterday I've not yet posted it here though. I'm a complete newbie, just beginning to find my way around substack 😊
Thank you ever so much for sharing your experience! I, too, feel the spiritual loss! I’m so glad you’ve found a creatice practice that works for you and keeps you connected to the Earth, even though it’s not your usual creativity, which is such a big loss. I look forward to you sharing your pictures 🌸
Despite the incredible amount of energy required for your creative work, there is a clarity to your writing that is ringing loud and clear right now. I love the idea of tiny creative acts. Many of us get caught up in the idea that we must always be producing, when sometimes small bursts are perfectly acceptable. I am learning this and working to accept that I am more than what I produce. Thank you.
Thank you for sharing as always. I’m currently doing a scrap book with photos from signing defacto papers, getting engaged and getting married. I find focusing hard though 🙈 I’m trying to do it every Tuesday, but this week is a high symptom week so not doing much. 💚
Focusing is soooo hard! Glad you’ve got a small creative project to do. It sounds fun! Hope you go into a low symptom week soon — they’re just better those weeks ❤️🌸
It’s so hard!!! I’ve put it in a place to have it handy next to the sofa, trying to make it easier for myself haha 😝 Thank you my dear, I hope you’re having a low symptom day ❤️
A big thank you from me too for your guided meditation the other day! I so wanted to comment on that directly but got lost in the meditation. After lying on my back for years to breath, to meditate, I’m now trying to make it a practice to sit up and meditate - yours was my 2nd one and I’d really like to revisit it.
My favourite go to practice has always been to journal (a tool I describe as one that saved my life back in 2016). I was at my worst in 2018 and learnt from thereonin to “do what I can when I can”. But during a massive relapse I had in 2020 (where i didn’t know what the hell was going on or that relapse was a normal part of the journey), I started writing from a place of severe and agonising pain. One word at a time. Turning my experience into posts (maybe one every 3 weeks or so). It’s al built from there and now I’m generally sharing one blog post a week (plus posts on linked in) and currently writing books. I have 4 in loose draft format (one that burst into life out of nowhere last week which I actually think will be my first published book) and I can see the others will quickly follow suit. I have a feeling it’ll all look like an overnight success to others but the reality is I started writing 7 years ago and have lost everything in that time (mental/physical health, job, career, income, home, relationships, etc). Thank you for sharing your story this morning, I loved reading every word 🙏🩵🦋
Thank you as always for sharing your experiences and reflections! I love how those tiny acts of creativity can turn into something bigger with ease and persistance. Wow! Your first published book is slowly being birthed, I love it!
Thank you Madelleine, for giving me the opportunity to have an insight into your world. And for your guided meditation the other day, reminding me to "appreciate " the many things I have in my life... however small or simple they may be.
🌸❤️🌸
Thanks for this post! I struggle with creativity when the day to day work writing responsibilities are technical, sucking the creative juices out of me! I find as I write my manuscript about my chronic journey that leaving my normal work space is essential. Music helps me too!
Can’t wait to read your book! I’m glad you’ve found ways to help you in your writing 🌸
This piece resonated deeply. Thank you for sharing it.
❤️🌸❤️
I totally get this. As well as living with severe ME & FMS +. I’ve been titrating off gabapentin for 17 months. It feels like I can’t access parts of my brain, like imagination or synthesizing information. When I try, it feels like heavy steel doors slam down on all sides. Often, I’m very literal which makes for funny conversations. Mostly I feel dull-minded and flat, unemotive.
I’m a poet so my thing is to write a poetic line, image or metaphor a day. It keeps me trying to think creatively, which brings joy to my mostly bedridden life at the moment. Revising a poem is difficult because it takes higher levels of thinking. Often my line these days is just a brief description of how I feel.
Recently I’ve started microdosing to help with the titration and it’s starting to allow me to access more of my mind again & to feel more like myself, instead of a zombie in a coma.
Thank you so much for sharing your experience! I love that you try to write a line a day. I do that too, although sometimes it may just be two words. Interesting re micro-dosing! It sounds like it’s working? No side-effects?
Oof I feel this in my soul. Creativity is definitely one of the first thing to go with the energy as your brain moves into “what is practical to survive” mode. Never mind how art and creativity feeds our soul and heart and keeps us going with hope. Once it leaves the world gets dark and our hearts beat only to get us through the day. Devastating. I hope the change in meds helps. X
“… brain moves into “what is practical to survive””: this is so true! Hadn’t thought of it like that. But yeah, what about our spiritual survival? I too hope the meds will help!
Crossing fingers and let us know if you feel up to it :)
It’s tough isn’t it? How we cope I don’t know. There have been days with me as bad as yours. When my brain just doesn’t work. And I hate it so much. There have been years where I couldn’t do anything creative, not even copying, it’s such a loss. I wrote a poem about climbing the stairs hubby read it called it dramatic - I sort of understand why he said that cos it’s a poem, but also no, not really the poem was the truth, how it really feels and I think after 15 years he still struggles to truly understand the struggles physical and mental. And he’s one of the good ones.
Thank you so much for sharing ❤️🌸 And yes, it’s not that people are bad it’s just that there is so little awareness about chronic illness. I hopeyou share your poem one day, you can share it here if you want. I hope you continue writing the truth 🥰
It’s on my Substack I’ll get the link
https://open.substack.com/pub/tamchennell/p/everest-a-poem?r=2mh4vu&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
I LOVE this!! It’s EXACTLY what climbing the stairs with ME/CFS is like. Truth bomb!
Thank you
Thanks Madelleine, I am so glad you have written about this because it's something that affects me too, and I grieve so much for it.
I always was highly imaginative, I thought in images, I saw in my minds eye in images and now I just can't. It's like I have lost my imagination and it's horrible. It's something I just took for granted before ME.
My previous carers, before I became severe with ME around 10 years ago revolved around using my imagination, art and play, I feel like I have lost a huge part of me and a part of me which bought me so much joy and enriched my life.
I previously loved to paint and draw, particularly imaginative pieces, children's illustrations. Now I can't. I think some medications really affect this too. I also used to be a very spiritual person, it's like I've completely lost access to this part of me too.
What I have found though is that I can still draw from observation and I have taken up realism drawing of wildlife, from my bed. I get so much joy from this particularly because when I am working on a piece for so long, I feel so connected and close to the animal I am drawing, so deeply moved by their beauty and this means so much to me, with not being able to get out in the wild and connect with nature any more.
I have just finished a red squirrel yesterday I've not yet posted it here though. I'm a complete newbie, just beginning to find my way around substack 😊
Thank you ever so much for sharing your experience! I, too, feel the spiritual loss! I’m so glad you’ve found a creatice practice that works for you and keeps you connected to the Earth, even though it’s not your usual creativity, which is such a big loss. I look forward to you sharing your pictures 🌸
Despite the incredible amount of energy required for your creative work, there is a clarity to your writing that is ringing loud and clear right now. I love the idea of tiny creative acts. Many of us get caught up in the idea that we must always be producing, when sometimes small bursts are perfectly acceptable. I am learning this and working to accept that I am more than what I produce. Thank you.
Thank you so much for your reflections and kind words ❤️🌸
Thank you for sharing as always. I’m currently doing a scrap book with photos from signing defacto papers, getting engaged and getting married. I find focusing hard though 🙈 I’m trying to do it every Tuesday, but this week is a high symptom week so not doing much. 💚
Focusing is soooo hard! Glad you’ve got a small creative project to do. It sounds fun! Hope you go into a low symptom week soon — they’re just better those weeks ❤️🌸
It’s so hard!!! I’ve put it in a place to have it handy next to the sofa, trying to make it easier for myself haha 😝 Thank you my dear, I hope you’re having a low symptom day ❤️
A big thank you from me too for your guided meditation the other day! I so wanted to comment on that directly but got lost in the meditation. After lying on my back for years to breath, to meditate, I’m now trying to make it a practice to sit up and meditate - yours was my 2nd one and I’d really like to revisit it.
My favourite go to practice has always been to journal (a tool I describe as one that saved my life back in 2016). I was at my worst in 2018 and learnt from thereonin to “do what I can when I can”. But during a massive relapse I had in 2020 (where i didn’t know what the hell was going on or that relapse was a normal part of the journey), I started writing from a place of severe and agonising pain. One word at a time. Turning my experience into posts (maybe one every 3 weeks or so). It’s al built from there and now I’m generally sharing one blog post a week (plus posts on linked in) and currently writing books. I have 4 in loose draft format (one that burst into life out of nowhere last week which I actually think will be my first published book) and I can see the others will quickly follow suit. I have a feeling it’ll all look like an overnight success to others but the reality is I started writing 7 years ago and have lost everything in that time (mental/physical health, job, career, income, home, relationships, etc). Thank you for sharing your story this morning, I loved reading every word 🙏🩵🦋
Thank you as always for sharing your experiences and reflections! I love how those tiny acts of creativity can turn into something bigger with ease and persistance. Wow! Your first published book is slowly being birthed, I love it!