August was a very mixed bag of a month for me. In the positive corner, Sebastian and I got married and had a lovely day. In the not-so-positive corner, Sebastian got Covid two weeks before the wedding, there was a heatwave, I massively overdid it socially and work-wise, my Hashimoto’s treatment is turning out to be more difficult than I expected, and my PoTS symptoms got re-triggered after a bath with new salts and over two weeks later they haven’t calmed down. I think that was maybe the straw that broke the camel’s back.
After a hopeful few months where my health was on the upswing, I’m feeling a bit dejected, frustrated and sad because I’ve been feeling rather bloody rubbish once again.
That being said, given everything that has been going on, it probably shouldn’t be a surprise. I have an appointment with my OT in a few weeks to talk about trying to find a better balance with things and get some support for some tangible things I can do to, and then we’re off on honeymoon to the south of France. I cannot put into words how much I am looking forward to that.
For today’s conversation thread, I wanted to discuss something that has been on my mind a lot recently: creativity when you live with chronic illness.
One of the loveliest things about reading through the comments on our last two threads has been seeing how many talented, creative, interesting people are here (thank you <3) and how you’ve all been learning to reconceptualise creative practice in a way that is accessible and manageable with your chronic illnesses.
In a recent interview I did with the Substack team, they asked me: “How do you balance running your Substack alongside your own illness?”
I answered: “It’s hard. You want to get into the flow of things and just write and write because you have so many ideas, but your brain and body is screaming at you to stop. I’m trying to learn a different way of being creative, one that enables me to be more mindful of taking breaks and not pushing myself too far. It’s … a work in progress.”
Finding ways to write and make and do whilst still staying in that flow state is something I have not quite cracked. It’s always “just a little bit more” because that stuff is LITERALLY THERE AND WHAT IF I FORGET IF I DON’T JUST DO IT NOW? Or I can’t get back in the zone? But that “just a little bit more” is what can push you over the edge.
Writing, for me, is how I process things in my life. Whether it’s published or not, I’ve always used writing as a way to work through my thoughts and feelings on things. It gets it out of my head and helps me make sense of the world. I have fragments of essays, of thoughts, littered in all different places across my devices. Most of it never gets used, but when something needs to be written, it just…needs to be written. And enforcing a break, even if I know that I can come back to it later, kind of ruins the moment.
With that in mind, that’s what I’d love to hear from you about today. Here are some prompts, in case that’s helpful:
What does creativity mean to you?
How do you incorporate creative practice into your life?
Do you feel like creativity and your creative practice helps you manage your chronic illness?
What challenges do you come up against when trying to be creative with your chronic illness?
How do you navigate those challenges? Have you learned a new way of being creative? What does that look like?
What has been the biggest lesson you’ve learned about creativity?
Over to you! But first, a quick disclaimer:
This a place to share and discuss topics that can be personal and challenging. We all have different experiences, and that’s ok! Please refrain from offering unsolicited medical advice. Make sure to treat everyone with kindness and respect. Basically, don’t be an internet arsehole.
I look forward to chatting with you in the comments!
August sounds like a lot! Summer and repeated heatwaves have been really rough on me too. I really hope that the next few months will be an improvement for you and that you have a wonderful honeymoon.
Creativity keeps me sane. I have lots of different things that I can pick up, do a little bit and put down again depending on how I feel and there's a definite correlation between feeling good and how creative I've been in a day. With the endless heatwaves I really struggled with having to spend so much time lying down in the dark not being able to do much and it's so nice to be doing more again. I try to do a little of at least one fibre thing (crochet, weaving, cross-stitch) and one arty thing (drawing, colouring, painting) each day. I tidy but don't fully put stuff away to make it easier to get started and to stop. It's also really nice to have that pleased feeling of "I did that!" seeing my open sketchbook on the table when I walk past it.
My big challenge is stopping before my brain and body force me to. I'm trying to remember that doing too much will stop me doing everything for longer and that it sucks to cause myself so much pain that I'm forced to go and lie down with my heat pad and think about what I've done!
Finding natural stopping points for microbreaks and longer breaks helps but that's easier with some things than others. Crochet is the easiest, writing is the hardest. I started a blog a while back and can't manage writing often but when I can I want to write every thought in my head all at once without stopping, which is a recipe for a headache. I'm trying to put thoughts in bullet points to come back to later so I don't forget them and that's going a little better.
I'm sorry to hear you've struggled with the heatwaves as well. They really were awful!
I love that you have a lot of different creative things that you can dip in and out of. I always try to take up something a bit "arty" but they never stick! I'm glad that now the heatwaves have passed you're able to take up some of these things again. And I really like the idea of not fully putting things away (I'm the same!)
I think the challenge of stopping is one of the hardest things, especially if you're really loving what you're doing. It's great to hear that crochet allows for microbreaks and longer breaks - I guess I could see knitting being good for that too - finish a row.
And you're right - bullet points do help a lot with writing - but there is something about that stuff that all needs to get dumped out of your head, isn't therE!
Knitting would work well with allowing for microbreaks, depending on what you're doing stopping mid-row is an option too. I've been using a crochet pattern to make a wavy blanket that just uses the same 12 stitches over and over. I've just finished a baby blanket either 123 stitches per row and have been working on a full size one that's 183 stitches and up to an hour per row. I usually take a microbreak every couple of waves of 12 and a longer break every 5-8 waves. It's nice to have a pattern that's so pacing-friendly.
Hi Emily, I really relate to finding it hard to stop before doing too much. And micro-pacing seems to work better for me with some creative tasks when I feel I need more of flow (ie writing). I darn my wooly socks a lot and that is definitely easier to pace. I think part of why I find it hard to stop when something is going well is because I don't feel I know when the next flare-up might happen - which obvs might be because I've over done it. argh! I like that you leave your sketchbook out to see work you have done - want to try that too xxx
Yes! It's so funny, I've just picked up this monster book in an attempt to have less screen time whilst I'm supposed to be resting and I know that if I don't finish it before I go away, I won't pick it up again :D
I can relate to that! The more I have to use my brain for something the more I want to make the most of it actually working. Reining that in is hard work.
I've repaired stuff like jeans and jumpers before but not tried darning socks. Can you feel where the repair is? The thought of feeling any unevenness has put me off up til now.
I don’t suffer from a chronic physical illness like you, but I suffer from some mental health disorders - PTSD, depression, anxiety, that typically accompany physical and chronic illnesses and I am struck by your newsletter. I’m glad I found you, through the On Substack post, because it’s difficult for me to balance creativity, motivation, mental health, and exterior life.
My energy stores get tapped out pretty rapidly (and if I’m spending time with negative or toxic people or energy sources, that can surely wreck my creative fertility for the present moment) and I often feel guilty or even some shame about my inability to do all the things I want to do, especially creatively.
My creativty spins like a wheel - I’ve learned that by keeping my hands busy, I’m able to keep my brain demons at bay. I don’t always have the mental energy to expend on writing my newsletter or my novel, so I switch it up by doing more hand-laborious things like building small scale war dioramas (I’ve been working on my current one for nearly 15 years!), playing my guitar, or painting (I’m no artist, though) which I find all help build my creative “stock”, allowing me to vacillate between projects.
Enjoy your honeymoon, the time passe so quickly! And thank you, again, for doing this newsletter - for pouring your sleepless nights, hazy mornings, and sometimes painful, sometimes joyous days and experiences with us. SO GLAD I FOUND YOU! <3`
Thanks so much for being here and for your incredibly kind words!
It's interesting what you said about not having the mental energy to write (something I experience a lot) and how doing something more physical helps you. This is something that came up in one of my podcast episodes about pacing - about how switching tasks from physical/cognitive/restful can help us to be able to do a bit more, whilst allowing certain aspects of us to have a break. I've found that I've been able to do a little bit more around the house (washing up, for example) as my "brain rest time" - it's just forcing myself to break away from the cognitive tasks that I find a challenge, as most of the things I enjoy are cognitively demanding!
I love all the different projects you have allow you to do all different types of things!
So sorry to hear of your setback. So many chronic symptoms seem to be exacerbated by stress, don't they?
[Synchronously, I too have been writing about "straws that break the camels" back this week.].
I am with you on the writing. It really helps me to get things out of my system and work through things, and ultimately understand myself. It also gives me a feelgood factor, when readers reply that it has helped them. According to Prof. Andrew Huberman, it is not just being grateful for other people, it is actually being on the receiving end of gratitude which is the real powerhouse of healing.
Interesting, for me, if I can get into the flow state of creative writing, I find I can go longer without the Parkinson's meds wearing off, so I think there is something dopamine generating with this state. Then I will suddenly crash once the piece of writing is finished.
Thank you so much, Gary, and I'm so glad you're here.
Honestly, the stress thing is one of the most frustrating. I've been thinking a lot recently about how much of my "management" requires constant self-control and the thing I'm the worst at controlling is my constant need to overdo it!
A few times I've had things explained to me like a bucket. Like, you can kind of cope with the additional stress and other things for a while, but then the bucket overflows (I've been saying "my bucket hath overfloweth") and then it all just kind of comes crashing down on you for a bit.
I'm glad that you find writing so helpful, too. And that's a really good point about being on the receiving end of gratitude. I think for me if I can write something about something that is challenging but turn it into something that is helpful for others, it gives a purpose to something that is, ultimately, bad luck and has no meaning to it whatsoever!
I can massively relate to the post-writing crash too!
Yes, the sense of purpose from writing is another massive benefit!
On the "over-doing it" aspect, here is something I wrote a while back (I think the piece was entitled "Hammering Ourselves"!) that supports your observations:
"The trouble with being chronically ill is that usually we have lost our interoception, the senses of our own internal states. One of these is sense of tiredness, especially when feeling chronically fatigued a lot as then it is even harder to work out when we are just normally tired. There is also a serious temptation to go hammer and tongs at the neural exercises we hope will make us better. Unfortunately, this is not how neuroplasticity works - too much of a good thing isn't better. This type of healing process can't be rushed. It takes time. Indeed, even only a few minutes a day on any particular neural exercise may be all that is needed for long term benefits, but over-doing do it just exhausts the system more and more, which can actually be detrimental, especially when we find it hard to tell that the work is making us tired. The danger is we just keep hammering a way at it, exhausting our system further and further in a negative spiral of descent.
The second issue is that a very significant factor for many of us becoming ill in the first place is that we hold ourselves to impossible standards. This is often translated to our healing processes, so when we don't manage to fit in a busy schedule of neural exercises into our day (because eventually our body says no), we end up making it all worse by feeling like we're failures, or getting stuck in looping thoughts of self-doubt and guilt. Again, another spiral of descent.
We need to remember that healing is primarily about neuromodulation and neurorelaxation, calming our nervous and endocrine systems, and thus, while relaxation techniques are crucial for healing, being relaxed about our healing activities is also vital for increasing our aliveness. This is why I recommend healing exercises should always be done in the spirit of fun, joy and curiosity - or not at all! It should be part of our day when our inner child can come out to play!"
Thanks for sharing that! The impossible standards thing rings very true, and is part of the frustration of chronic illness (and a lack of representation/lack of data)- I don't even know what a reasonable standard is, given my state is always in flux/unreliable, and there is no 'median' to look at as an example. I'm excited to dig deeper into your blog.
Hmm... that's an interesting point, perhaps its not only that our interoception - sense of internal physiological states - is not well calibrated - but our sense of appropriate standards (perhaps we need a latin or greek word for this type of "-ception" too :-) ) is not well calibrated. A similar concept is that I have noticed we tend to create a lot of what Prof Andrew Huberman refers to as "reward prediction errors" and tend to deny ourselves a sense of reward, and hence dopamine.
Yes! Good point. Just because a creative action may be fulfilling in itself, doesn't mean we shouldn't celebrate every step of progress with it and activate those reward centers of the brain.
Leah, you are not the only one late to the party. I read this post when it first came out, but never had time to respond. But I definitely wanted to. I really recognized myself in this post-- I have the same problem of not being able to stop. I will start to write music or poetry and always think to myself oh just a little bit more and a little bit more and a little bit more translates to staying up all night. Then I’m thrown off balance for the next two days. I need to find my balance. And it sounds like others have similar problems ,which is a help to know. Thank you for this group.
P. S. I am writing on my phone using a voice conversion program because I have a tremor and phone keyboards don’t work very well for me. So please excuse any roughness in this comment of mine. I’m literally talking from the top of my head. :-)
No roughness at all, thank you so much for finding the time to respond! It is really helpful to know lots of people have the same issue with stopping, isn't it?! I definitely think it's a challenging thing to force yourself to stop and it's frustrating because sometimes those timings can be so short!
I’m a bit late to the discussion but it’s great to read about everyone’s creative processes! I’ve been a multidisciplinary artist my entire life so when I became disabled with ME/CFS in my mid-40s I knew I had to continue making meaning in that way.
I’ve focused on embroidery since I got sick but have been able to add writing back into my practice and a bit of music via piano and some composing. I use a modified pomodoro method to make sure I don’t overdo it. Stitching is a restorative activity for me so I use it as my breaks between writing and music.
Hi Lia! That's so wonderful you've been able to add new creative practices in. I go through phases of using a modified pomodoro technique too - especially for work. I find it really helpful, but I tend to find that I'm over-enthusiastic in the mornings and the breaks end up getting longer and longer as the day goes on :D
Ah yes, I’m familiar with being over enthusiastic in the morning! I try to be as strict as possible and stop within a minute of my pomodoro timer ringing. I often make a note of where I left off so I can pick it up again easily after my break. Some days I’m definitely more successful than others.
For me, creativity is a way of interpreting the world and making meaning from my experience. Creativity is a way of taking the information and sensation I receive and processing it into something to share, hopefully something that connects with others. (you can see and listen here: hollismickey.com).This can be food, textiles, music, performance. My art practice has always been quite physical: chopping, tons of tiny stitches (which looks not physical but is!), playing instruments, using my body as a sculpture. And, often I make things that take a long time to make, and/or share them in long duration (ex performances lasting hours, elaborate meals). I have had a diagnosis of dysautonomia which comes with orthostatic intolerance, me/cfs, chronic pain, hEDS, GI distress etc etc since 2015 but I believe the onset was in 2010 after I got h1N1. Recently, my orthostatic intolerance, pain and all symptoms have escalated to extremes. I really stopped making things like textiles and music and performance that felt like they involved more of my body for a bit. I was actually already enrolled in a low residency MFA in poetry, so I just focused on that. Poetry allowed for me to think visually (how it looks on the page), sonically (how it sounds), and through connection (meaning). I could pace myself more, stop, return, revise and much of it rather reclined. Still, I was waiting to be 'better' to return to my other activities. After over a year of doctors visits I realized that 'better' was no longer a word I wanted to use. I would see improvements, but I needed to let go of that waiting for some body of before. I started learning how to play music again, now entirely seated, cross legged, in short stints (as sometimes sitting up bothers me too). I wanted to share but I cannot perform out (covid, stamina, etc) so I decided to share on Instagram live-- you can catch me there sometimes and in my reels (@apronon). I play now in ways that feel healing and restorative. And, I am working on an album of improvisations since compositions is more than I can take on. I determined that plating my food, which my body does not always willingly consume would be a practice I was proud of, and I post dinner in my stories. I have other little daily practices I have written of before in these threads also. Anyways, this is long, but all this is to say I struggle with creativity as it is such a part of my identity, and often long for 'before' but I also am finding that discovering new ways to make can bring new meaning to me and to others.
"For me, creativity is a way of interpreting the world and making meaning from my experience. Creativity is a way of taking the information and sensation I receive and processing it into something to share, hopefully something that connects with others." I love this. The other day further down the thread we were also talking about how making meaning from our experiences and sharing them with others can give a sense of purpose that can be so vital when you're isolated.
Thanks for sharing your experiences with poetry - I've never thought about it like that before! I think because I'm very not visual, I've often struggled to connect with it, so it was super interesting hearing about it in all different sensorial ways.
Yesterday, at work this notion of the value of creativity came up as part of individual healing. I think that when our experience challenges us — our bodies feel unfamiliar or frightening, we feel alone, we experience trauma etc— we especially need ways of making sense of our world. We need ways to interpret what has happened and make it meaningful (to us, to others). Art offers a tool in those moments we need to transform the impossible non-sense of disability in an able bodied dominated world, perceived illness in a “well” world into sense. In this way it can be a tool for survival of the hardest times and maybe even thriving in them because we can transform a violent or terrible experience into something outside of ourselves to look at, wonder about and in this way make beautiful or at the very least interesting instead of only harmful and internalized. Anyways, just more rambling!
This is all so helpful, Hollis. And I’m loving browsing your website and seeing your textile pieces. They remind me a little of Louise Bourgeois’s vibe. But very much your own.
So far, I like the freedom of playing with fabric. I’d like to be able to interpret my experience through creativity but not sure where to begin...
Oh wow- your parallels of creativity and wisdom are beautiful, and not something I'd considered before. I love that you're publicly holding yourself accountable/setting an example of ways to be creative in spite of limitations. Your flexibility with creative endeavors is definitely inspiring!
Sorry to hear you're not having such a great time - although congrats on the wedding! I hope you have a lovely Honeymoon when it comes
I've always enjoyed being creative but it was never that important until I became ill. Suddenly it shifted from being something nice to do in leisure time to a priority activity that still made me feel like 'me'. It feels so good to do something meaningful, and you can look back at what you have made.
I initially wrote a lot of poetry when I first became ill to try to express how I was feeling - as I felt so alone. It was a really good way to get my feelings out. I've now moved onto knitting and sewing, although I'm having to be super strict when learning new things as it is so cognitively draining, and when using a sewing machine you have to sit upright. Knitting is easier as you can lay on the sofa and do that, plus it is more familiar to me so more like relearning an old skill rather than a completely new one.
I'm loving reading other people's thoughts on this topic!
Thanks so much, Rachel! And I think that's a super interesting and important insight - that it's a way for you to still feel like you. I've never really thought about it before, but I think that's definitely true for me too!
I'm so glad you found poetry helpful when you first got ill, and that you've rediscovered knitting! I've tried a few times to start it but it really hurts my hands so I stopped!
I find so much of my time is spent either at work or illness management - being creative in small bursts are one of few things that I choose to do because I want to, and would choose to continue doing even if someone did come up with a miracle cure tomorrow.
Ah that's rubbish about knitting hurting your hands, glad you have other creative outlets you are able to access!
Love this post Natasha! And thank you for your podcasts on pacing as when I was first taught about pacing it was really hurried and did mot make much sense to me and I was essentially told to only do 20mins of art a day. this more than any other part of treatment or even symptoms had me spiralling into despair as it placed an arbitrary block on something I truly loved doing. And I had no idea how rest either!
Overtime I found that my creativity wasn't just this one activity 'at a desk' and that reading or listening to audiobooks/radio/podcasts that related to what I was making were also part of the whole process. I've built up a library of books which helps me as a visual reference that I am learning more about making art + stories even if I haven't put a mark on paper or picked up drawing styles that day or days or weeks.
I also decided to embrace technology which I felt was a bit taboo in the art world as a 'cheat' approach but I started to wonder why this was? Especially as technology isn't a problem with writing as much?! I've been starting to research different art movements throughout history and around the world to understand more about which ideas I have absorbed and which I want to keep hold of about the ways to make art or tell stories.
I love your multi-disciplinary approach Natasha and also hearing your actual voice as well as your writing voice too!
I really hope you have a lovely time on honeymoon and that you are able to enjoy all the patisserie you can find! And I'm so sorry to hear you've been through such a rubbish time. I hope that changes soon too x
Thanks Bryony. Oh gosh, what a horrid thing to be told - and it sounds so arbitrary. I remember very distinctly the thing that sent me into a spiral - and it was being told to expect less of my life. Not, what are the things that are important to you and how can we work on incorporating them. Just...expect less. I can totally understand why that was the thing that sent you spiralling!
I love that you have found ways to expand what being creative means to you - I think we really underestimate that. So much of creative work (and the creative work of people I know who are, for example, physicists) requires a lot of time away from the work itself, thinking, reading. We really underestimate that, and I think this is a great reminder. I also love that you've been able to embrace technology. I think just finding ways that can make something easier, more accessible (or even doable for you) is so important! Annoyingly, I hate reading on an e-reader, but it would make my life so much easier.
And thank you - I am very much looking forward to two weeks away!
I want to second this that it is the labor market that makes us think that creativity is only 'doing' when we are visibly active. Cy Twombly says, “When I work, I work very fast, but preparing to work can take any length of time." I think this is important-- it is something art can show and model for capitalist society (though of course this does not resolve issues of paychecks). I honestly and often say a loud now, to myself: I worked on my project XXX today by [listening to music, reading, allowing for mental space]. It might sound goofy but truly recognizing what I have accomplished by intangible activity matters to fight the ever present drive for quantity and output.
My heart aches to hear that you’re having such a hard time. I just have to say that I especially love this piece, as you are one of the most creative people I know. You have wonderful ideas and you make terrific connections and you bring them into the world and articulate them beautifully. You are also quite amazing at creating solutions to problems. Honeymoon in the south of France sounds like just what the schrayber ordered ♥️
Thank you, Mirl. I have definitely missed Yiddish over the last little while, too. Clara very kindly took my roles in yesterday's performance as I knew I wouldn't be able to prepare. I'm looking forward to coming back to our shmues-krayz and seeing you and everyone. I hope your busy end of summer stuff is calming down and you're able to get some well-deserved rest!
I relate so much to others’ thoughts on fiber as a chronic illness friendly thing to do. Sometimes I can’t follow the threads of my thoughts, but I can always come back to a line of rope because it’s physically there.
You can take it so slow. With macrame, you can take a break almost any time as each knot tends to secure itself. I will sometimes set timers to remind myself to stop - that really is the difficult part!
Oh and this: I went to a posh art school, worked in art galleries and museums, and write for art magazines. Because of this, I think, I’ve always been intimidated by making my own art. I get stuck in thinking it has to be super intellectual or theory based or large scale or fit within some art world theme etc. There’s something freeing about making fiber things because it’s already a marginalized practice in contemporary art, which still favors painting, sculpture, installation etc. And it’s just string, really. I hope if I keep making stringy things, I will eventually find my creative voice and be able to make something that could be in a gallery, something that has a point of view. But that’s not the primary goal anymore - at the moment it’s about having the freedom to play and experiment.
This is timely for me, as this week my brain suddenly went into creative overdrive mode (which is also a big danger, because that often happens as a distraction technique for me, and because I tend to fall into the 'trap' of jumping into a new creative endeavor, get overwhelmed and exhausted, and end up dropping it and feeling guilty for years afterward).
Creativity used to be big ideas, but since the recent change in my ME/CFS (to be constant, rather than cyclical/manageable) it's morphed to encompass anything from "oh, I have this funny story idea that can exist without me actually writing it down or writing said story" to "I'm going to use a shimmery gold ink to journal my thoughts and symptoms today". Creativity has always been, for me, very hope-affirming, empowering, and strengthening. When I'm able to be creative, I feel 'tapped in' to the magic of wonder in the world. And I've always valued creativity in people (and wit/cleverness) so when I have it I feel capable and worthy in ways I do not, without it.
All that said, my expressions of creativity in terms of projects are absolutely antithetical to managing my chronic illnesses. I've had to learn to be satisfied with using interesting colors of fountain pen ink as my only daily creative practice, because taking a creative idea and running with it (baking something, cooking a new dish, sewing an outfit for my dog, hosting a readathon on my blog, etc.) require *so* much energy management, always more than I anticipate. And while ideally I'd give myself plenty of run-up time to accomplish said creative task, once the newness of a creative idea wears off, the whole thing feels stale and pointless, so I'm always trying to prioritize that creative project once it's in my head.
Right now I'm struggling a lot with needing to consider ways to earn money (I don't qualify for disability, but I'm not capable of working even a part-time job right now), and my brain keeps latching onto ideas for creative new hobbies. Perhaps there's an intersection there, where a creative hobby could make me money, but I did that once (for 5 years) and it wasn't an income *and* it soured me on the creative hobby itself because I was obligated to do it. Yet this hyperfixation continues.
Oh my gosh I could relate so much to that first paragraph - distraction as a coping mechanism can be so brilliant - up to that point where it's overdone!
The challenge of turning a creative pursuit, or something we love, into something for work is such a challenge, isn't it. It changes from being something restorative, something just for you, into something that is loaded with so many other things. I really hope you're able to figure something out!
Good luck with those! I considered a YouTube channel for that, but it *is* a lot of energy. And when monetization requires you to be regularly posting and engaging with your audience, that feels like something that could easily become a threat to rest and health. I hope you're able to balance everything in a way that works best for you!
Have you ever seen The Fall with Lee Pace? The main character has to convalesce in a hospital and that period of forced recovery and isolation becomes an intensely creative story-within-a-story. There's a similar thread there, where all that physical, mental, and emotional pain can still go through an alchemical process in creativity to become something beautiful and valuable for the self and others.
Oh my gosh that sounds terrifying! The mental fortitude that you have, to survive all of that, is incredible. I'm really glad that The Chosen was such a rallying point for you, to help in your getting through so much stress and uncertainty (along with your faith, of course....but we always hope faith gives us strength, and a movie giving strength is something special). I'm glad you made it through that!
August sounds like a lot! Summer and repeated heatwaves have been really rough on me too. I really hope that the next few months will be an improvement for you and that you have a wonderful honeymoon.
Creativity keeps me sane. I have lots of different things that I can pick up, do a little bit and put down again depending on how I feel and there's a definite correlation between feeling good and how creative I've been in a day. With the endless heatwaves I really struggled with having to spend so much time lying down in the dark not being able to do much and it's so nice to be doing more again. I try to do a little of at least one fibre thing (crochet, weaving, cross-stitch) and one arty thing (drawing, colouring, painting) each day. I tidy but don't fully put stuff away to make it easier to get started and to stop. It's also really nice to have that pleased feeling of "I did that!" seeing my open sketchbook on the table when I walk past it.
My big challenge is stopping before my brain and body force me to. I'm trying to remember that doing too much will stop me doing everything for longer and that it sucks to cause myself so much pain that I'm forced to go and lie down with my heat pad and think about what I've done!
Finding natural stopping points for microbreaks and longer breaks helps but that's easier with some things than others. Crochet is the easiest, writing is the hardest. I started a blog a while back and can't manage writing often but when I can I want to write every thought in my head all at once without stopping, which is a recipe for a headache. I'm trying to put thoughts in bullet points to come back to later so I don't forget them and that's going a little better.
Hi Emily,
I'm sorry to hear you've struggled with the heatwaves as well. They really were awful!
I love that you have a lot of different creative things that you can dip in and out of. I always try to take up something a bit "arty" but they never stick! I'm glad that now the heatwaves have passed you're able to take up some of these things again. And I really like the idea of not fully putting things away (I'm the same!)
I think the challenge of stopping is one of the hardest things, especially if you're really loving what you're doing. It's great to hear that crochet allows for microbreaks and longer breaks - I guess I could see knitting being good for that too - finish a row.
And you're right - bullet points do help a lot with writing - but there is something about that stuff that all needs to get dumped out of your head, isn't therE!
Knitting would work well with allowing for microbreaks, depending on what you're doing stopping mid-row is an option too. I've been using a crochet pattern to make a wavy blanket that just uses the same 12 stitches over and over. I've just finished a baby blanket either 123 stitches per row and have been working on a full size one that's 183 stitches and up to an hour per row. I usually take a microbreak every couple of waves of 12 and a longer break every 5-8 waves. It's nice to have a pattern that's so pacing-friendly.
That's great!
Hi Emily, I really relate to finding it hard to stop before doing too much. And micro-pacing seems to work better for me with some creative tasks when I feel I need more of flow (ie writing). I darn my wooly socks a lot and that is definitely easier to pace. I think part of why I find it hard to stop when something is going well is because I don't feel I know when the next flare-up might happen - which obvs might be because I've over done it. argh! I like that you leave your sketchbook out to see work you have done - want to try that too xxx
Yes! It's so funny, I've just picked up this monster book in an attempt to have less screen time whilst I'm supposed to be resting and I know that if I don't finish it before I go away, I won't pick it up again :D
I can relate to that! The more I have to use my brain for something the more I want to make the most of it actually working. Reining that in is hard work.
I've repaired stuff like jeans and jumpers before but not tried darning socks. Can you feel where the repair is? The thought of feeling any unevenness has put me off up til now.
I don’t suffer from a chronic physical illness like you, but I suffer from some mental health disorders - PTSD, depression, anxiety, that typically accompany physical and chronic illnesses and I am struck by your newsletter. I’m glad I found you, through the On Substack post, because it’s difficult for me to balance creativity, motivation, mental health, and exterior life.
My energy stores get tapped out pretty rapidly (and if I’m spending time with negative or toxic people or energy sources, that can surely wreck my creative fertility for the present moment) and I often feel guilty or even some shame about my inability to do all the things I want to do, especially creatively.
My creativty spins like a wheel - I’ve learned that by keeping my hands busy, I’m able to keep my brain demons at bay. I don’t always have the mental energy to expend on writing my newsletter or my novel, so I switch it up by doing more hand-laborious things like building small scale war dioramas (I’ve been working on my current one for nearly 15 years!), playing my guitar, or painting (I’m no artist, though) which I find all help build my creative “stock”, allowing me to vacillate between projects.
Enjoy your honeymoon, the time passe so quickly! And thank you, again, for doing this newsletter - for pouring your sleepless nights, hazy mornings, and sometimes painful, sometimes joyous days and experiences with us. SO GLAD I FOUND YOU! <3`
Hi Adrian,
Thanks so much for being here and for your incredibly kind words!
It's interesting what you said about not having the mental energy to write (something I experience a lot) and how doing something more physical helps you. This is something that came up in one of my podcast episodes about pacing - about how switching tasks from physical/cognitive/restful can help us to be able to do a bit more, whilst allowing certain aspects of us to have a break. I've found that I've been able to do a little bit more around the house (washing up, for example) as my "brain rest time" - it's just forcing myself to break away from the cognitive tasks that I find a challenge, as most of the things I enjoy are cognitively demanding!
I love all the different projects you have allow you to do all different types of things!
So sorry to hear of your setback. So many chronic symptoms seem to be exacerbated by stress, don't they?
[Synchronously, I too have been writing about "straws that break the camels" back this week.].
I am with you on the writing. It really helps me to get things out of my system and work through things, and ultimately understand myself. It also gives me a feelgood factor, when readers reply that it has helped them. According to Prof. Andrew Huberman, it is not just being grateful for other people, it is actually being on the receiving end of gratitude which is the real powerhouse of healing.
Interesting, for me, if I can get into the flow state of creative writing, I find I can go longer without the Parkinson's meds wearing off, so I think there is something dopamine generating with this state. Then I will suddenly crash once the piece of writing is finished.
I am grateful to have found your substack.
Thank you so much, Gary, and I'm so glad you're here.
Honestly, the stress thing is one of the most frustrating. I've been thinking a lot recently about how much of my "management" requires constant self-control and the thing I'm the worst at controlling is my constant need to overdo it!
A few times I've had things explained to me like a bucket. Like, you can kind of cope with the additional stress and other things for a while, but then the bucket overflows (I've been saying "my bucket hath overfloweth") and then it all just kind of comes crashing down on you for a bit.
I'm glad that you find writing so helpful, too. And that's a really good point about being on the receiving end of gratitude. I think for me if I can write something about something that is challenging but turn it into something that is helpful for others, it gives a purpose to something that is, ultimately, bad luck and has no meaning to it whatsoever!
I can massively relate to the post-writing crash too!
Yes, the sense of purpose from writing is another massive benefit!
On the "over-doing it" aspect, here is something I wrote a while back (I think the piece was entitled "Hammering Ourselves"!) that supports your observations:
"The trouble with being chronically ill is that usually we have lost our interoception, the senses of our own internal states. One of these is sense of tiredness, especially when feeling chronically fatigued a lot as then it is even harder to work out when we are just normally tired. There is also a serious temptation to go hammer and tongs at the neural exercises we hope will make us better. Unfortunately, this is not how neuroplasticity works - too much of a good thing isn't better. This type of healing process can't be rushed. It takes time. Indeed, even only a few minutes a day on any particular neural exercise may be all that is needed for long term benefits, but over-doing do it just exhausts the system more and more, which can actually be detrimental, especially when we find it hard to tell that the work is making us tired. The danger is we just keep hammering a way at it, exhausting our system further and further in a negative spiral of descent.
The second issue is that a very significant factor for many of us becoming ill in the first place is that we hold ourselves to impossible standards. This is often translated to our healing processes, so when we don't manage to fit in a busy schedule of neural exercises into our day (because eventually our body says no), we end up making it all worse by feeling like we're failures, or getting stuck in looping thoughts of self-doubt and guilt. Again, another spiral of descent.
We need to remember that healing is primarily about neuromodulation and neurorelaxation, calming our nervous and endocrine systems, and thus, while relaxation techniques are crucial for healing, being relaxed about our healing activities is also vital for increasing our aliveness. This is why I recommend healing exercises should always be done in the spirit of fun, joy and curiosity - or not at all! It should be part of our day when our inner child can come out to play!"
I hope it is also ok to share with you my latest substack article https://garysharpe.substack.com/p/lessons-learned-on-a-journey-into - because this speaks to the "meaningless" or "why me?" questions and what I found.
Thanks Gary - I look forward to reading it!
Thanks for sharing that! The impossible standards thing rings very true, and is part of the frustration of chronic illness (and a lack of representation/lack of data)- I don't even know what a reasonable standard is, given my state is always in flux/unreliable, and there is no 'median' to look at as an example. I'm excited to dig deeper into your blog.
Hmm... that's an interesting point, perhaps its not only that our interoception - sense of internal physiological states - is not well calibrated - but our sense of appropriate standards (perhaps we need a latin or greek word for this type of "-ception" too :-) ) is not well calibrated. A similar concept is that I have noticed we tend to create a lot of what Prof Andrew Huberman refers to as "reward prediction errors" and tend to deny ourselves a sense of reward, and hence dopamine.
Yes! Good point. Just because a creative action may be fulfilling in itself, doesn't mean we shouldn't celebrate every step of progress with it and activate those reward centers of the brain.
I love “my bucket hath overfloweth” - will start using!
ahahaha do!
Leah, you are not the only one late to the party. I read this post when it first came out, but never had time to respond. But I definitely wanted to. I really recognized myself in this post-- I have the same problem of not being able to stop. I will start to write music or poetry and always think to myself oh just a little bit more and a little bit more and a little bit more translates to staying up all night. Then I’m thrown off balance for the next two days. I need to find my balance. And it sounds like others have similar problems ,which is a help to know. Thank you for this group.
P. S. I am writing on my phone using a voice conversion program because I have a tremor and phone keyboards don’t work very well for me. So please excuse any roughness in this comment of mine. I’m literally talking from the top of my head. :-)
No roughness at all, thank you so much for finding the time to respond! It is really helpful to know lots of people have the same issue with stopping, isn't it?! I definitely think it's a challenging thing to force yourself to stop and it's frustrating because sometimes those timings can be so short!
I’m a bit late to the discussion but it’s great to read about everyone’s creative processes! I’ve been a multidisciplinary artist my entire life so when I became disabled with ME/CFS in my mid-40s I knew I had to continue making meaning in that way.
I’ve focused on embroidery since I got sick but have been able to add writing back into my practice and a bit of music via piano and some composing. I use a modified pomodoro method to make sure I don’t overdo it. Stitching is a restorative activity for me so I use it as my breaks between writing and music.
Hi Lia! That's so wonderful you've been able to add new creative practices in. I go through phases of using a modified pomodoro technique too - especially for work. I find it really helpful, but I tend to find that I'm over-enthusiastic in the mornings and the breaks end up getting longer and longer as the day goes on :D
Ah yes, I’m familiar with being over enthusiastic in the morning! I try to be as strict as possible and stop within a minute of my pomodoro timer ringing. I often make a note of where I left off so I can pick it up again easily after my break. Some days I’m definitely more successful than others.
That's a good idea!
For me, creativity is a way of interpreting the world and making meaning from my experience. Creativity is a way of taking the information and sensation I receive and processing it into something to share, hopefully something that connects with others. (you can see and listen here: hollismickey.com).This can be food, textiles, music, performance. My art practice has always been quite physical: chopping, tons of tiny stitches (which looks not physical but is!), playing instruments, using my body as a sculpture. And, often I make things that take a long time to make, and/or share them in long duration (ex performances lasting hours, elaborate meals). I have had a diagnosis of dysautonomia which comes with orthostatic intolerance, me/cfs, chronic pain, hEDS, GI distress etc etc since 2015 but I believe the onset was in 2010 after I got h1N1. Recently, my orthostatic intolerance, pain and all symptoms have escalated to extremes. I really stopped making things like textiles and music and performance that felt like they involved more of my body for a bit. I was actually already enrolled in a low residency MFA in poetry, so I just focused on that. Poetry allowed for me to think visually (how it looks on the page), sonically (how it sounds), and through connection (meaning). I could pace myself more, stop, return, revise and much of it rather reclined. Still, I was waiting to be 'better' to return to my other activities. After over a year of doctors visits I realized that 'better' was no longer a word I wanted to use. I would see improvements, but I needed to let go of that waiting for some body of before. I started learning how to play music again, now entirely seated, cross legged, in short stints (as sometimes sitting up bothers me too). I wanted to share but I cannot perform out (covid, stamina, etc) so I decided to share on Instagram live-- you can catch me there sometimes and in my reels (@apronon). I play now in ways that feel healing and restorative. And, I am working on an album of improvisations since compositions is more than I can take on. I determined that plating my food, which my body does not always willingly consume would be a practice I was proud of, and I post dinner in my stories. I have other little daily practices I have written of before in these threads also. Anyways, this is long, but all this is to say I struggle with creativity as it is such a part of my identity, and often long for 'before' but I also am finding that discovering new ways to make can bring new meaning to me and to others.
"For me, creativity is a way of interpreting the world and making meaning from my experience. Creativity is a way of taking the information and sensation I receive and processing it into something to share, hopefully something that connects with others." I love this. The other day further down the thread we were also talking about how making meaning from our experiences and sharing them with others can give a sense of purpose that can be so vital when you're isolated.
Thanks for sharing your experiences with poetry - I've never thought about it like that before! I think because I'm very not visual, I've often struggled to connect with it, so it was super interesting hearing about it in all different sensorial ways.
Yesterday, at work this notion of the value of creativity came up as part of individual healing. I think that when our experience challenges us — our bodies feel unfamiliar or frightening, we feel alone, we experience trauma etc— we especially need ways of making sense of our world. We need ways to interpret what has happened and make it meaningful (to us, to others). Art offers a tool in those moments we need to transform the impossible non-sense of disability in an able bodied dominated world, perceived illness in a “well” world into sense. In this way it can be a tool for survival of the hardest times and maybe even thriving in them because we can transform a violent or terrible experience into something outside of ourselves to look at, wonder about and in this way make beautiful or at the very least interesting instead of only harmful and internalized. Anyways, just more rambling!
And what lovely rambling it is!
This is all so helpful, Hollis. And I’m loving browsing your website and seeing your textile pieces. They remind me a little of Louise Bourgeois’s vibe. But very much your own.
So far, I like the freedom of playing with fabric. I’d like to be able to interpret my experience through creativity but not sure where to begin...
I’m so crashed lately I’ve had a hard time finding inspiration myself!
I’d say just find something that you’re drawn to and don’t feel you must show results to anyone— just explore material without a product in mind!
Oh wow- your parallels of creativity and wisdom are beautiful, and not something I'd considered before. I love that you're publicly holding yourself accountable/setting an example of ways to be creative in spite of limitations. Your flexibility with creative endeavors is definitely inspiring!
Sorry to hear you're not having such a great time - although congrats on the wedding! I hope you have a lovely Honeymoon when it comes
I've always enjoyed being creative but it was never that important until I became ill. Suddenly it shifted from being something nice to do in leisure time to a priority activity that still made me feel like 'me'. It feels so good to do something meaningful, and you can look back at what you have made.
I initially wrote a lot of poetry when I first became ill to try to express how I was feeling - as I felt so alone. It was a really good way to get my feelings out. I've now moved onto knitting and sewing, although I'm having to be super strict when learning new things as it is so cognitively draining, and when using a sewing machine you have to sit upright. Knitting is easier as you can lay on the sofa and do that, plus it is more familiar to me so more like relearning an old skill rather than a completely new one.
I'm loving reading other people's thoughts on this topic!
Thanks so much, Rachel! And I think that's a super interesting and important insight - that it's a way for you to still feel like you. I've never really thought about it before, but I think that's definitely true for me too!
I'm so glad you found poetry helpful when you first got ill, and that you've rediscovered knitting! I've tried a few times to start it but it really hurts my hands so I stopped!
I find so much of my time is spent either at work or illness management - being creative in small bursts are one of few things that I choose to do because I want to, and would choose to continue doing even if someone did come up with a miracle cure tomorrow.
Ah that's rubbish about knitting hurting your hands, glad you have other creative outlets you are able to access!
Thank you! And yes that's brilliant!
Ah. “Me feel like ‘me’”-- yes! That’s such a part of what I find when I make these days. I appreciate this articulation of that experience.
Love this post Natasha! And thank you for your podcasts on pacing as when I was first taught about pacing it was really hurried and did mot make much sense to me and I was essentially told to only do 20mins of art a day. this more than any other part of treatment or even symptoms had me spiralling into despair as it placed an arbitrary block on something I truly loved doing. And I had no idea how rest either!
Overtime I found that my creativity wasn't just this one activity 'at a desk' and that reading or listening to audiobooks/radio/podcasts that related to what I was making were also part of the whole process. I've built up a library of books which helps me as a visual reference that I am learning more about making art + stories even if I haven't put a mark on paper or picked up drawing styles that day or days or weeks.
I also decided to embrace technology which I felt was a bit taboo in the art world as a 'cheat' approach but I started to wonder why this was? Especially as technology isn't a problem with writing as much?! I've been starting to research different art movements throughout history and around the world to understand more about which ideas I have absorbed and which I want to keep hold of about the ways to make art or tell stories.
I love your multi-disciplinary approach Natasha and also hearing your actual voice as well as your writing voice too!
I really hope you have a lovely time on honeymoon and that you are able to enjoy all the patisserie you can find! And I'm so sorry to hear you've been through such a rubbish time. I hope that changes soon too x
Thanks Bryony. Oh gosh, what a horrid thing to be told - and it sounds so arbitrary. I remember very distinctly the thing that sent me into a spiral - and it was being told to expect less of my life. Not, what are the things that are important to you and how can we work on incorporating them. Just...expect less. I can totally understand why that was the thing that sent you spiralling!
I love that you have found ways to expand what being creative means to you - I think we really underestimate that. So much of creative work (and the creative work of people I know who are, for example, physicists) requires a lot of time away from the work itself, thinking, reading. We really underestimate that, and I think this is a great reminder. I also love that you've been able to embrace technology. I think just finding ways that can make something easier, more accessible (or even doable for you) is so important! Annoyingly, I hate reading on an e-reader, but it would make my life so much easier.
And thank you - I am very much looking forward to two weeks away!
I want to second this that it is the labor market that makes us think that creativity is only 'doing' when we are visibly active. Cy Twombly says, “When I work, I work very fast, but preparing to work can take any length of time." I think this is important-- it is something art can show and model for capitalist society (though of course this does not resolve issues of paychecks). I honestly and often say a loud now, to myself: I worked on my project XXX today by [listening to music, reading, allowing for mental space]. It might sound goofy but truly recognizing what I have accomplished by intangible activity matters to fight the ever present drive for quantity and output.
My heart aches to hear that you’re having such a hard time. I just have to say that I especially love this piece, as you are one of the most creative people I know. You have wonderful ideas and you make terrific connections and you bring them into the world and articulate them beautifully. You are also quite amazing at creating solutions to problems. Honeymoon in the south of France sounds like just what the schrayber ordered ♥️
Thank you, Mirl. I have definitely missed Yiddish over the last little while, too. Clara very kindly took my roles in yesterday's performance as I knew I wouldn't be able to prepare. I'm looking forward to coming back to our shmues-krayz and seeing you and everyone. I hope your busy end of summer stuff is calming down and you're able to get some well-deserved rest!
I just wanted to circle back and (finally) share some of the fiber stuff I’ve been making.
My little Etsy: longmorestudioco.etsy.com
The first wall hanging I actually finished: https://www.instagram.com/p/Cjd21BQplgN7pfkmCM9-cRFPgvBbhsHC2qrLc00/?igshid=MDJmNzVkMjY=
A fun fringey plant hanger: https://share.icloud.com/photos/00bIb36E4G-wP_ZoLr1QIxwVg
I relate so much to others’ thoughts on fiber as a chronic illness friendly thing to do. Sometimes I can’t follow the threads of my thoughts, but I can always come back to a line of rope because it’s physically there.
You can take it so slow. With macrame, you can take a break almost any time as each knot tends to secure itself. I will sometimes set timers to remind myself to stop - that really is the difficult part!
Oh and this: I went to a posh art school, worked in art galleries and museums, and write for art magazines. Because of this, I think, I’ve always been intimidated by making my own art. I get stuck in thinking it has to be super intellectual or theory based or large scale or fit within some art world theme etc. There’s something freeing about making fiber things because it’s already a marginalized practice in contemporary art, which still favors painting, sculpture, installation etc. And it’s just string, really. I hope if I keep making stringy things, I will eventually find my creative voice and be able to make something that could be in a gallery, something that has a point of view. But that’s not the primary goal anymore - at the moment it’s about having the freedom to play and experiment.
Ahh thank you for sharing - these are all lovely! Congratulations :D
And yes, that makes a lot of sense - finding a way to break out of that in a medium that is adaptable for you is so wonderful.
This is timely for me, as this week my brain suddenly went into creative overdrive mode (which is also a big danger, because that often happens as a distraction technique for me, and because I tend to fall into the 'trap' of jumping into a new creative endeavor, get overwhelmed and exhausted, and end up dropping it and feeling guilty for years afterward).
Creativity used to be big ideas, but since the recent change in my ME/CFS (to be constant, rather than cyclical/manageable) it's morphed to encompass anything from "oh, I have this funny story idea that can exist without me actually writing it down or writing said story" to "I'm going to use a shimmery gold ink to journal my thoughts and symptoms today". Creativity has always been, for me, very hope-affirming, empowering, and strengthening. When I'm able to be creative, I feel 'tapped in' to the magic of wonder in the world. And I've always valued creativity in people (and wit/cleverness) so when I have it I feel capable and worthy in ways I do not, without it.
All that said, my expressions of creativity in terms of projects are absolutely antithetical to managing my chronic illnesses. I've had to learn to be satisfied with using interesting colors of fountain pen ink as my only daily creative practice, because taking a creative idea and running with it (baking something, cooking a new dish, sewing an outfit for my dog, hosting a readathon on my blog, etc.) require *so* much energy management, always more than I anticipate. And while ideally I'd give myself plenty of run-up time to accomplish said creative task, once the newness of a creative idea wears off, the whole thing feels stale and pointless, so I'm always trying to prioritize that creative project once it's in my head.
Right now I'm struggling a lot with needing to consider ways to earn money (I don't qualify for disability, but I'm not capable of working even a part-time job right now), and my brain keeps latching onto ideas for creative new hobbies. Perhaps there's an intersection there, where a creative hobby could make me money, but I did that once (for 5 years) and it wasn't an income *and* it soured me on the creative hobby itself because I was obligated to do it. Yet this hyperfixation continues.
Oh my gosh I could relate so much to that first paragraph - distraction as a coping mechanism can be so brilliant - up to that point where it's overdone!
The challenge of turning a creative pursuit, or something we love, into something for work is such a challenge, isn't it. It changes from being something restorative, something just for you, into something that is loaded with so many other things. I really hope you're able to figure something out!
Good luck with those! I considered a YouTube channel for that, but it *is* a lot of energy. And when monetization requires you to be regularly posting and engaging with your audience, that feels like something that could easily become a threat to rest and health. I hope you're able to balance everything in a way that works best for you!
Thank you so much, Marian! I've not seen that film - would you recommend it?
Yes - that's so true - everything I've done that I'm most proud of started off a way to distract/process a really bad time!
I will! Thanks so much for the recommendation.
I just reviewed that book, and the impacts on it had on me! ( https://garysharpe.substack.com/p/book-review-when-the-body-says-no )
Have you ever seen The Fall with Lee Pace? The main character has to convalesce in a hospital and that period of forced recovery and isolation becomes an intensely creative story-within-a-story. There's a similar thread there, where all that physical, mental, and emotional pain can still go through an alchemical process in creativity to become something beautiful and valuable for the self and others.
Oh how interesting - I will definitely add that to my list!
Oh my gosh that sounds terrifying! The mental fortitude that you have, to survive all of that, is incredible. I'm really glad that The Chosen was such a rallying point for you, to help in your getting through so much stress and uncertainty (along with your faith, of course....but we always hope faith gives us strength, and a movie giving strength is something special). I'm glad you made it through that!
Thank you so much, Marian!