After the wonderful and unexpected success of our Introduce Yourself chat (check it out if you haven’t already), I’d love to start a monthly community chat thread. So, here it is: our Rest Room Rambles for August!
It has been a bit of a difficult week. Sebastian tested positive for Covid (he’s doing much better, thankfully) and having known so many people whose lives have been turned upside down by post-viral illness, it’s really terrifying every time someone I love gets sick. We’ve been isolating in our rooms, and I’ve been testing negative every day, thank goodness.
So, because I fancy being a little selfish on my own newsletter, I’d love to hear some lovely things…
What has been a big win for you in the last month?
What are you looking forward to this month?
What has been the biggest lesson you’ve learned recently?
Here are mine:
A big win for me has been my progress with Yiddish. Over the last few months I was able to go to a Yiddish weekend and speak in Yiddish pretty much the whole time, take a class online where I thought I’d understand nothing (but I understand pretty much everything) and continue to make slow and consistent progress over time. It has been one of the most satisfying things I’ve done as an adult. Tay.
I’m looking forward to getting married (obv) and that we’ve changed plans to just have some food at home after the service.
And the biggest lesson I’ve learned is that when shit hits the fan, everything I know about pacing and prioritising and resting flies out of the window. I just push and try to get everything done and then end up paying for it in the end. I will definitely write about this more in the future.
That’s me…over to you! But first, some quick house rules:
No unsolicited medical advice. This means making sure to avoid talking about specifics when it comes to treatments, medications, diets etc. It’s ok to talk about your experiences generally, but please be careful and cautious when discussing anything medical. On top of that, treat everyone with kindness and respect. Basically, don’t be an internet arsehole.
I look forward to chatting with you in the comments!
Thanks for these prompts! Such excellent questions.
A big win for me this month was to go through the editorial process with an essay for an upcoming anthology (Sharp Notions: Essays on the Stitching Life). I got the edits done ahead of schedule WHILE pacing myself well during surgery recovery.
This month I’m looking forward to my studio renovations being done. My husband has been hard at work on those and I may be able to start working in there instead of in the living room!
The biggest lesson I’ve learned recently is a renewal of my Stoic philosophy practice of Amor Fati—loving fate. I had a hysterectomy in late May and recovering from that as well as pacing myself well because of ME/CFS has meant accepting where I’m at on any given day.
That IS a big win - well done! Please do share the link (if it's available online!) when it's published. Pacing writing is hard at the best of times, so that's amazing you did it during your surgery recovery.
Can you share a bit about Amor Fati? I enjoy learning about Stoicism and haven't come across this!
Thanks Natasha! The anthology won’t be published until September 2023 but I’ll definitely be sharing the news once it’s out.
Amor Fati is part of the dichotomy of control in Stoicism: being clear on what is and what isn’t within our power. When we radically accept what fate has given us it allows us to flourish because we no longer focus on where we our powerless.
I’ve found Amor Fati to be a really useful practice in chronic illness, especially with the dynamic nature of ME/CFS. On my most symptomatic days, being self-compassionate and giving over to my symptoms allows me to rest well because I stop stressing about what my body is doing. It’s not an easy practice, but oh so helpful in my experience.
That sounds wonderful! One of the things I struggled with when reading books about stoicism is they say things that I'm like "yeah that's awesome! i agree!" but then I'm like...how do I get my brain to also agree beyond in theory :D
Yeah. Not all the books are clear about the practice of Stoicism. Stoic Week is coming up this fall. It’s a free week-long course about the various Stoic practices and I’ve done it numerous times to refresh my practices.
That was super interesting to read - thank you again for sharing. I found this incredibly moving:
"My life is now calm, ordered, and balanced. The exquisite attention I offer in my symptomatology embroideries is a way of dissecting, understanding, and being compassionate about my symptoms. I am overjoyed and grateful I am significantly less symptomatic since the onset of ME/CFS in 2015, but I am also aware how the many self-compassionate and temperate changes I’ve made in my life due to my Stoic practices help me listen deeply to my body’s needs."
And looking at your embroidery again, I really love how you've been able to turn how you're feeling into something so beautiful and evocative. It's funny - when it comes to creativity of that sort, representing visually, I can't do it at all! I really wish I could.
I'm so glad that your stoic practice has helped you. There have definitely been elements of stoicism that have appealed to me over the years - I look forward to exploring it some more.
Huge congratulations on your publication and I would be really interested to read when it’s out. And I’m going to look up the works of the philosophers mentioned below. Thank you again for sharing
Thanks so much, Claire! In my experience Marcus Aurelius is the easiest Stoic philosopher to understand. Though there’s a lot of excellent modern Stoic works out there, too!
My biggest win is also my biggest lesson. I have been working on living with my chronic illnesses rather than against them, or despite them. Changing the preposition in my thinking and languaging has been supportive in allowing for days when I am not able to do things I remember doing in the past, or might even be able to do the next day. I have been allowing for tenderness, sadness-- to grieve is not shameful but rather a way to move forward rather than tread water always waiting for something that might change. In fact, grieving has allowed me to find richer glimpses of joy, pleasure, and finding appreciation for rest, rather than resistance of it. Being less anxious about living with chronic illness has actually helped my symptoms some too-- amongst my alphabet soup of diagnoses, I have dysautonomia, and so often very elevated sympathetic activity. Without so much fear and resistance, I don't amplify the cycle on a flared day.
I needed this prompt to frame it clearly! I am looking forward to some creative work: writing, sewing, music. I have been having a hard time having energy and space for my art practice for nearly two years and especially since things began to really escalate to the point that mobility was an issue last fall. This ongoing flare with such 'dynamic' (put nicely) changing symptoms has had me in a slew of tests, appointments, finding new specialists, drug and supplement 'experiments' -- plus the pain, brainfog, neurological anomalies, gi distress, sensory sensitivity, etc etc ...of it all. I am aware that not making art has depleted me, even though I did not have, and could not have had, energy for it-- it is part of who I am that needs to manifest. This month, I am committed to finding creativity-- in small ways and big. I have little daily practices I have started, which helps me feel connected, like I have done 'something' even in the most flared state. Making small gestures towards creativity gives me profound sustenance, as essential as any treatment or medication!
This is lovely, Hollis. What are your daily creative practices? And congratulations on your big win and your big lesson! This sounds really wonderful - and that's a really interesting point about elevated sympathetic activity with dysautonomia - I've not thought of it that way before!
Natasha: I have a notebook I write one word or phrase that captures a sensation I had -- it sort of serves like a daily sensory flip book. I also try to read one poem out loud (before dinner) and plate my food and take a picture of it (endless meal pics in my insta stories) which helps me feel more excited and appreciative to eat as eating causes more symptoms. And YES managing being less resistant to my symptoms has actually helped the physiologically-- not that I am perfect at this by ANY means. That does not mean thinking they are a 'gift' or even being 'present' to them (distraction from pain is important!)-- just less resistant and fighting of them.
Yes! I remember writing a piece on tools to help people manage dislocations (years ago) and one of the first tips that was shared by the expert physio was try to stay as calm as possible as if you get really tensed and stressed, it's going to make it so much more difficult. It sounds like an impossible task, doesn't it? But over time, I think learning to accept the symptoms in the moment really can help with the emotional stress that they cause. I definitely noticed that with my PoTS symptoms (interestingly, I was able to unravel the physical anxiety that then caused the brain anxiety as my body was looking for the tiger in the room - and being able to recognise where those symptoms were coming from made me feel less scared and frustrated by them. Or, I suppose, a more extreme example, I used to get very severe and scary psychological feelings before my periods. It used to be extremely upsetting - now I look at my app, know what it is, and whilst it's difficult, I can kind of just be like...ok...this is what it is. It'll be gone soon).
I love those small routines and creative practices - they also seem flexible enough to work depending on how you're feeling on any given day!
Hollis thanks for sharing and for you insight into your creative process. I really resonated with what you said about not fighting your situation, but accepting, that has been the biggest shift for me. And finding small manageable daily creative habits that connects me to myself and my bigger goals are so important to me. Thank you for sharing and good luck with your projects
So grateful, Hollis, for your articulation of grieving. I also identify with the dysautonomia flares being intensified by anxiety. I wish you the best for your creative practices.
hi hollis, find your approach to creativity really inspiring. thank you for sharing. I also try to make art and when I first had to pace that part of myself I found it so, so, so hard. I've also just taken a photo of a pretty part of a leaf in my home or drawn using my phone notes app! I totally relate to you saying 'it's part of who I am that needs to manifest'.
hope your enjoy finding your creativity this month xxx
I have an instagram which is @bryonyattenburrow and share a mix of drawings and photos as I can. Do you share yoit work online as would love to see yours too x
I hope that Sebastian is fully recovered for your wedding and that you both have a fantastic day!
Big win - sold my car after deciding to stop driving and got through the symptom flare up and emotional stress feeling happy with that choice.
Looking forward to - trying out wheelchairs and power attachments next week. I'm very excited for getting these and the freedom they'll give me.
Lesson I've learnt - needing to use my walking stick every time I go out for a solid month is not as big a deal as I thought it would be. I've used a stick for over a year but it lived in my car for when I went to the park and I rarely needed it for short walks from home. When I did I felt really uncomfortable about it because usually I don't look obviously disabled and I was worried people would be rude and nosy. Now I need it more because between stress and heat my mobility's not been great and it's fine! Lots of people are actually friendlier and give me more space when I've got it. Really this is just part of the ongoing lesson of nothing disability-related actually being as bad as I think it's going to be. Which is something I need to keep in mind for being nervous about the wheelchair.
These are all super great! I'm glad you're happy with the choice of selling your car! And good luck with testing out wheelchairs. I can definitely relate with the "big deal" thing - I found the mental weight that lifted off me when I used the right mobility aid (whilst obviously having its own things that come up) was so wonderful. I really hope it helps you!
If it helps, I've found decorating a mobility device to be both a fun way to express yourself *and* a neutralizing conversation piece for people who might be unintentionally rude about your disability. I have to rent scooters when I go on vacation and will be walking more than a few blocks, and I carry vinyl stickers on cardboard and string them around my scooter with ribbon and LED lights. Instead of getting rude looks now, I get to make people bemused and less scared of the girl in the chair. I hope you find a whole delightful realm of freedom in your new mobility aids!
That's brilliant! I love that way of getting round not being able to do anything permanent to a rented scooter. I know I want rainbow wheel spokes but I don't know yet what other decorations I might have. I'm trying chairs and attachments out this morning and very excited for it!
I'm even more excited now! I had so much fun and I can't wait until I've actually got them. Just need to check a couple of things and then I can get them 😁
My biggest win recently was being able to visit my very elderly grandmother in her care home for the first time in two years. I’ve not been able to go before now due to covid rules/distance so was very thankful for being able to see her.
I am looking forward to going on holiday soon and my lesson learnt is to order a travel neck pillow so that I don’t start the holiday with a flare up of awful neck pain from the long car journey 😂 Hoping it will help!
Hope you have a wonderful wedding Natasha and enjoy some chill time before the big day!
Thank you so much! And I'm so happy that you got to see your grandmother - that's so special. And also can I say a million times yes to the neck pillow. I also have one that is broken that I wrap around my waist and I rest my arms on it and it helps so much having that support and not having my arms hanging down!
Praying you continue to test negative! I love these thoughtful questions. Here are my answers (without letting myself overthink my responses):
1. A big win has been having the courage to follow my gut. This past month, I've listened to its preachings as I navigated jumping into freelance, deciding to leave NY, and say no to plans that didn't serve me.
2. I'm looking forward to landing in Italy and reuniting with my friend from the UK! And then heading to my first wedding abroad in the north of France with my family.
3. You can't do it all. And you don't have to do it all. Give yourself the space to rest and recharge. Or else your body will make you rest for you (and wind up sick, which happened to me with a week-long sickness I think was COVID).
Thank you so much! And I love the non-overthought responses, thank you!
Those are all excellent big wins! Do you know where you're going to go when you leave New York?
And your Europe trips sounds BRILLIANT! Delicious food, excellent chilling out cultures and some beautiful stuff all around. I hope you have the loveliest time.
And I agree with Rachel, "You can't do it all. And you don't have to do it all" is such an important lesson. One I failed to recognise when Sebastian got sick this week as I was like RIGHT I'M GOING TO DO EVERYTHING AND LOOK AFTER HIM AND THE FLAT AND MYSELF AND EVERYTHING ELSE THAT WAS GOING ON TOO. It's like everything I knew just flew out the window.
I hope that you're recovering from your potential covid. I'm looking forward to reading your newsletter this week!
You can't do it all - such an important lesson. In a way, being ill has forced to think about what I really want to do, prioritise and enjoy those things more. Hope you enjoy Italy and the wedding in France!
Powerful prompts.... definitely got me thinking. Also made me realise I am not enjoying the little things enough or living mindfully!
My biggest win in July was, finishing a 800 page book - something I never thought I'd be able to do!
This month I am flying home for my dad's retirement, where I'll be giving a speech. The first time I'll be putting my writing in speech form. Hopefully the first of many!
Lessons. I think I am learning that despite challenges and set backs, I will still have happiness on my path. It will come.
Oh and just because I responded late last night, I'm now more brain aware and wanted to say good luck with your speech for your dad's retirement! I hope it goes well! It's so interesting the tweaks you have to make from written to verbal form.
And yay for happiness to come - I love that lesson.
Question for everyone, somewhat related to the discussion. How do you bring structure to your day when life with chronic illness can be so unpredictable and/or limited in what you can do? My dog definitely helps structure my day. But I’m still figuring out what I need (instead of focusing on his needs)!
I'm really bad at doing this when I'm not being mindful about it or when things get in the way. I'm generally better at it in the evening - not so much in the day. At night, I will have dinner, wash my face, put my tech away and spend the evening on the sofa with Sebastian and then go to bed with a little set routine we always do. I really noticed how Sebastian having Covid and being in my room on my laptop before bed really made me feel so much worse.
I tend to find in terms of things I want to do (like learning Yiddish) or need to do (PT) is best when I can outsource it to other people so I have something in my diary and I just have to show up. Obviously, this isn't financially feasible for everyone, but if I was feeling a bit meh but could have done something adapted I might not do it if I didn't have a class/session.
I did have a nice morning routine until we moved and had a noisy neighbour in the morning when I started opening my laptop and just started working since I coudln't do anything restful - but actually I quite like just getting work done asap, but then I tend not to give myself more time to rest in the back end of the day. Trying to figure out how to build in rest, more than anything else. I do find timers helpful and I used to literally calendar block my entire day and that helped a lot - just haven't done it for a while!
My need to rest forms a lot of my structure. I try to be up around 9-9.30am, have a 15-30 minute lie down at lunch time, have an afternoon sleep and have another 15 minute lie down to meditate I'm the evening. Everything else is more unpredictable but that need stays pretty much constant.
I build in as much flexibility as possible. I try to remove all immediacy from tasks (I ask myself, "can I do this tomorrow instead?" and the answer is almost always yes, even if I have to then get creative with what I'm eating because the task is grocery shopping, or wear pajamas because I've run out of clean clothes). It's not an efficient life, but it's freeing to remember that I can run the dishes twice if I need to, or wait 3 weeks before I vacuum.
Because my nervous system in general throws tantrums when I lack schedule, my body has trained itself to wake between 6 and 7 every morning and sleep between 9 and 10 every evening. I set alarms on my phone to eat at regular intervals. I've outsourced some things (like putting my dog in a daycare 3 times a week, because I don't have the energy to play with her every time she's bored), so that adds some structure. And I like to read before bed as part of my easing-to-sleep routine.
I enjoy feeling productive/accomplished, so I journal ever day and I track: symptoms, what I did (and whether it was primarily physical, cognitive, or restful), and a list of 3-5 things I want to accomplish that day. Then I cross those off when I do them, and if I don't do them, I write them on the next day's list. That helps lessen the general stress of "so much to do" that can happen when specific tasks become vague obligations. And I write with fountain pens and pretty ink, so I feel creative in my journaling.
All that said, I've never been good at forming habits, so if it's something I think I should do regularly, I set alarms and create calendar items (even for things like "use facial scrub" or "get out the leftovers to thaw".
Thanks for asking this Bea! I feel like I too really struggle with this and also feel the sense of 'now' that all tasks seem to have the moment I open my eyes - which actually tends to be when my symptoms are most intense. I used to be a morning person and then want an early night but this has now changed and I did have a hard time accepting that shift. I tried to keep doing things to specific times but it suddenly clicked that it felt too constrictive although I knew it really helped others - so I came up with trying to just book end my days with one or two things ie make tea, eat banana and ten mins of meditation (lying down!) and then ten mins of meditation and hand mask before bed and once I found those generally stuck I could add one or two more extra things but I built it up slowly. also I try to add something as a treat everyday so it doesn't feel like every task is a chore. sometimes it's not doing the washing up or extra time in bed but just something to feel nice. does anyone else build in treats/me time?! x
I try to make sure I have something nice to do every day, usually something creative and listening to No Such Thing As A Fish when I eat lunch so I have something funny to enjoy. The thing that made the most difference was having a "day off" once a week. I can't work but looking after myself and my home is exhausting and I get fed up of relentlessly having to feed myself and do household jobs. Having a day just to do things that make me happy, with the bare minimum required for food and cleaning up, is brilliant. It breaks the week up and has been amazing for my mental health.
This is so great! Thank you for creating this space. Everyone here is so wise and kind.
Win:
After my best chihuahua friend, Bella, passed away earlier this year, we adopted a shepherd-mix whom we named Yoshi (after Mario’s pet dinosaur). He came to us from a shelter in Texas 1800 miles away, and so we only saw photos before he arrived. Annoyingly, the shelter slightly fibbed and told us he was 24 pounds and 24 inches fully grown. Turns out Yoshi is a giant, long-legged, long-bodied 40 pound baby with plenty of room to expand—and no training! He is adorable though :)
My win is that I’ve experienced such a sense of accomplishment training him. With a bigger, stronger dog than expected, we know it’s even more important that he’s well mannered. I’m not able to work in a job at present, so I often feel unproductive. And so it’s been just amazing to see Yoshi learn and improve his doggie life skills. I’ve taught him sit, lie down, stay, come, and leave it. I usually have the energy to walk him around the block once a day (my partner does the long walks), and Yoshi is learning to match my slow pace and sit patiently beside me when I need to rest. POTS dog!
Looking forward to:
Next week, I’m flying down to Nashville to participate in a four-day POTS study at Vanderbilt University. I’m really nervous about it. But I’m super excited for the week after when Mike and I will spend a week alone together in his parents’ beach house. I feel so lucky to have access to a beautiful, calm space by the sea where I can recover from two flights and three consecutive days of tilt table tests. I plan to lie in the shade on the balcony and watch the waves; consume as much home-renovation TV as my light/sound sensitivity will allow; and have lots of cups of tea and cuddles.
Lesson:
With my therapist, I’m learning to feel my emotions. I really don’t like it. I keep feeling like crying but I can’t cry, or I have weird cries with no tears. I’m at the beginning of Hollis’s grieving lesson, I think, and am heartened that you can possibly get to a place of more acceptance through feeling the grief. I’ve learned so far that to feel my emotions, I need to stop thinking as much (in that moment) and try to tune in with my body. It’s really hard. I’ve always numbed out from my body for various reasons. And now, feeling betrayed by my body with chronic illness, I’m even more reluctant to tune into it. But it does help. And I will keep trying.
Thanks again, Natasha, for the prompts! Wishing you a lovely wedding and Sebastian a speedy recovery!
I'm so sorry to hear about Bella, but also congratulations on finding Yoshi (bloody brilliant name!) and training him. I can see how that would be super rewarding.
I hope things go well with your PoTS study, and it's lovely to hear you have somewhere restful to recover. There's something so restorative about being by the water. We're going to the south of France for our honeymoon and I literally cannot wait.
That's a big job with your therapist - and it's really brave to get started on that. I always used to joke that I have no emotions, but I've had to work on that too. I hope your therapist is supportive and helps you to start to unlock those feelings.
Yay Yoshi! Are you training him to be a Service Dog? He sounds like he has a great temperament for it. And well done you, on the obedience and leash skills training. Sounds like you make a good team.
I just want to say that grief is for sure a process, and although feelings are annoying (or I think so, anyway), there is a beauty and a lightness in the journey of acceptance, patience, and release that grief teaches us. And I hope you find that to be the case, too.
Sorry to hear that Sebastian has Covid - really hope he feels better soon and that you keep testing negative.
How exciting that your wedding day is nearly here!
Congrats on your progress with Yiddish. It's so magical when something suddenly clicks and you're like, wait a minute I can understand this!
It's such a lovely idea to use these prompts to share with the chat room. Here are mine below:
Big Win: really enjoyed a favourite film I hadn't watched in a good long while, and it had me laughing and beaming at its happy mood. (It was 'Singing in the Rain'!)
Looking forward to: finding joy in the small things. this last month has seen so many plans fall through (some symptom related, some related to other things). I started to just refocus on the tiny things I liked about my home. my bookcase. my plants. my soft furnishings. postcards on my fridge. really hope to keep finding this curiosity throughout the next month and looking forward to the difference this can make.
Lesson I have learnt: becoming a tiny bit better at not blaming myself and being horrible to myself in my own mind when symptoms cause me to cancel something I've been looking forward to. It felt like this was a theme this last month and I was actually really proud of myself for realising that I was a lot less mean to myself about it.
Thank you so much and thank you for sharing your lovely win and what you're lookig forward to. Learning to appreciate the small things (especially if you're not someone who naturally notices them) can be a really big step and quite game-changing. I've been finding a lot of joy in the giant sunflowers I bought last week. Every time I see them I'm like "OH HOW NICE ARE THESE SUNFLOWERS". It has been several days of it so far!
And you should be super proud for being less mean to yourself - like with everything that is a process, isn't it. Recognising when things aren't your fault, or when you're doing it for a restorative and kind reason.
Thank you Natasha. Sunflowers are especially captivating aren't they? Nice to think of them brightening up your day too. I definitely used to be more aware of simple pleasures but have lost touch with that a bit. Nice to be refinding it again. It seems to make everything have more space and joy in it.
Bryony thank you for sharing your lessons learnt, it really resonated with me, I’m recovering from the harsh inner critic that often won, slowly trying to move towards self acceptance and self love. It sounds a bit woo woo, or it does to a northern Brit, but it really turned around my approach and life felt a lot less hostile
I feel you with the 'woo woo' bit. It's taken the most conscious rethinking on my part to become kinder to myself. I'm glad that you have found that too.
My big win is that I finished sewing my beach robie. It felt so good to accomplish something, and is my first finished piece of sewing since relearning how to sew. Just need to actually get the energy to use it!
I’m really looking forward to going on a camping holiday this month, and just a change of scene from my sofa :D
My biggest lesson has been about how important my routine is. This month I’ve swapped around days of work and rest days to fit other people’s schedules, resulting in crashing and PEM every time. Sometimes I doubt how ill I am, but when I chuck my management strategies out the window it doesn’t go well!
Not taken one yet - thanks for the reminder! Although no idea how to post on here, be lovely if we could as sounds like lots of creative people here!
I'm going camping on two islands called Eigg and Canna off the West coast of Scotland. Both remote and with tiny populations (having to take all my food with me), but hopefully very quiet and chill. Looking forward to either reading/ sewing in the fields and on the beach, and maybe some short walks if energy allows
It's so hard with routine as sometimes it is unavoidable, but definitely need to put my foot down when there is the option
Second that, would love to see your sewing, I share a lot of my projects on Instagram @restandrestoration and sewing brings such a sense of accomplishment that I never knew existed and continued joy when you wear the thing! Happy making and happy holidays
Yep, just need to stick to our guns and stick to the routine. I've definitely read somewhere that the more often we do things in routine, the less the brain has to think about it and lowers the cognitive load, which would totally make sense (and also why we need to follow them)
Hello again! I hope Sebastian is on the mend and that you've stayed healthy *and* not exhausted yourself trying to do everything whilst he's ill.
July flew by for me. My biggest win was going to a week-long camp and not crashing there or after I got home. I was very merrily surprised! I hope this means I'm getting better about managing my physical form. I *ought* to say I'm looking forward to my birthday, which is at the end of this month, but I find myself so easily overwhelmed these days that I'm preferring not to even think about it. My anxiety has been high, thanks to new meds my doc put me on for the cognitive function decline I've been experiencing sharply this year, so I'd say my biggest lesson learned recently is to ground myself every day. Being in touch with my body, feeling my connection to the world around me, helps remind me to prioritize myself over all the distracting stress white noise bouncing around my brain.
Hello hello! Thank you - he's testing negative and I'm literally waiting for what will be my last daily Covid test as we speak.
That's wonderful news about the week-long camp! I'm sorry to hear you've been experiencing a lot of anxiety recently, side effects can often feel worse than what we're dealing with huh. I'm glad that you've found grounding to be helpful. Even if you're not looking forward to your birthday, a very quiet whisper of a Happy Birthday for later this month.
My big win has been sharing my writing and experience of living with chronic illness over on Substack, I didn’t realize how much shame I carried around with me, wishing I had ‘a more fixable’ less invisible illness. I didn’t get any negative backlash instead I just connected with other people in a similar boat. I’m looking forward to a trip to Rome next month, third time lucky going on this trip. The biggest lesson I’ve learnt or rather relearnt is the power of staying in your own lane. I really loved these prompts, it’s so important to celebrate any wins, especially when progress is not always visible. Wishing your partner a speedy recovery and hope you can enjoy the build up to your wedding.
I am Kai , a care giver in Australia . My client has Tourette syndrome . The swearing varient . It has it's moments in the sun . In full obnoxious glory . My client lost one eye on a bus from assault by a drunk. No excuse for that. Her other eye has had eight long surgeries while she has been fully awake. I cannot imagine her terror . Anesthesia was deemed too dangerous due to lung debilities . Chronic Obstructive Pulmonary Disease
( COPD ) . My client cannot be named here. I must respect privacy and protect her . Why am I talking here ? I like to think of it this way good people ; I was bitching about the hot asphalt , once while barefoot at the local icecream van outside a swimming pool. I got my icecream cone . A guy in a wheelchair had no legs . He could not move himself . He had a child acout 8 or 9 years old pushing him. The child asked for icecream , but the young man in the was too poor and had only enough for bread. I stopped to chat and bought both an icecream . He had crashed a motorcycle and was quad disabled . The child was his son and primary carer . His wife left him and took their older daughter after the accident . The divorce took nearly all his compensation . I never saw them after that , but I remember the moment and always say " No matter how bad it is , or gets , some poor soul is out there worse off than me .Battle it out . I can live with this , or , beat it. What is , is. Accept it ." Words are cheap , I know . I care for someone who cannot care for themselves . I have done so for over 30 years. Why , No ,she is not related. She wasa perfect stranger . I know in myself that social injustice needs fixing. If I do not act , then I am part of the injustice but condoning it by ignoring it. Thankfully the wheels are turning .Australia has the National Disability Insurance Scheme
( NDIS) whereby elegible recognised disability clients are endowed a lump sum of government cash to use on services such as physio , cleaning , laundry , night nurses , meal preparation , social activities , homecare in general . What a wonderful idea . Where there is life , there is hope. Hope is eternal . I end with prayers for your healing lwith ove and gace . Power to you all .
Thanks for these prompts! Such excellent questions.
A big win for me this month was to go through the editorial process with an essay for an upcoming anthology (Sharp Notions: Essays on the Stitching Life). I got the edits done ahead of schedule WHILE pacing myself well during surgery recovery.
This month I’m looking forward to my studio renovations being done. My husband has been hard at work on those and I may be able to start working in there instead of in the living room!
The biggest lesson I’ve learned recently is a renewal of my Stoic philosophy practice of Amor Fati—loving fate. I had a hysterectomy in late May and recovering from that as well as pacing myself well because of ME/CFS has meant accepting where I’m at on any given day.
Hi Lia,
That IS a big win - well done! Please do share the link (if it's available online!) when it's published. Pacing writing is hard at the best of times, so that's amazing you did it during your surgery recovery.
Can you share a bit about Amor Fati? I enjoy learning about Stoicism and haven't come across this!
Thanks Natasha! The anthology won’t be published until September 2023 but I’ll definitely be sharing the news once it’s out.
Amor Fati is part of the dichotomy of control in Stoicism: being clear on what is and what isn’t within our power. When we radically accept what fate has given us it allows us to flourish because we no longer focus on where we our powerless.
I’ve found Amor Fati to be a really useful practice in chronic illness, especially with the dynamic nature of ME/CFS. On my most symptomatic days, being self-compassionate and giving over to my symptoms allows me to rest well because I stop stressing about what my body is doing. It’s not an easy practice, but oh so helpful in my experience.
That sounds wonderful! One of the things I struggled with when reading books about stoicism is they say things that I'm like "yeah that's awesome! i agree!" but then I'm like...how do I get my brain to also agree beyond in theory :D
Yeah. Not all the books are clear about the practice of Stoicism. Stoic Week is coming up this fall. It’s a free week-long course about the various Stoic practices and I’ve done it numerous times to refresh my practices.
I also wrote an essay about Stoicism and chronic illness that you might like! In it I talk about how I integrated Stoicism into my day to day. https://classicalwisdom.com/philosophy/stoicism/when-illness-becomes-the-way-stoicism-as-a-way-through-chronic-illness-and-disability/
I’ve gone deep into Stoicism (as might be obvious here!) and am happy to talk about it more!
Oh thank you! I'll give it a read tomorrow!
That was super interesting to read - thank you again for sharing. I found this incredibly moving:
"My life is now calm, ordered, and balanced. The exquisite attention I offer in my symptomatology embroideries is a way of dissecting, understanding, and being compassionate about my symptoms. I am overjoyed and grateful I am significantly less symptomatic since the onset of ME/CFS in 2015, but I am also aware how the many self-compassionate and temperate changes I’ve made in my life due to my Stoic practices help me listen deeply to my body’s needs."
And looking at your embroidery again, I really love how you've been able to turn how you're feeling into something so beautiful and evocative. It's funny - when it comes to creativity of that sort, representing visually, I can't do it at all! I really wish I could.
I'm so glad that your stoic practice has helped you. There have definitely been elements of stoicism that have appealed to me over the years - I look forward to exploring it some more.
I need to get my hands on Amor Fati. This sounds incredible.
Keep looking after yourself Lia x
I can't wait to read it!
Huge congratulations on your publication and I would be really interested to read when it’s out. And I’m going to look up the works of the philosophers mentioned below. Thank you again for sharing
Thanks so much, Claire! In my experience Marcus Aurelius is the easiest Stoic philosopher to understand. Though there’s a lot of excellent modern Stoic works out there, too!
Lia, this is brilliant. I hope to read your essay when it’s published, and would also like to learn more about stoicism.
Thanks Bea! I mentioned a couple resources about Stoicism in my reply to Natasha just moments ago.
My biggest win is also my biggest lesson. I have been working on living with my chronic illnesses rather than against them, or despite them. Changing the preposition in my thinking and languaging has been supportive in allowing for days when I am not able to do things I remember doing in the past, or might even be able to do the next day. I have been allowing for tenderness, sadness-- to grieve is not shameful but rather a way to move forward rather than tread water always waiting for something that might change. In fact, grieving has allowed me to find richer glimpses of joy, pleasure, and finding appreciation for rest, rather than resistance of it. Being less anxious about living with chronic illness has actually helped my symptoms some too-- amongst my alphabet soup of diagnoses, I have dysautonomia, and so often very elevated sympathetic activity. Without so much fear and resistance, I don't amplify the cycle on a flared day.
I needed this prompt to frame it clearly! I am looking forward to some creative work: writing, sewing, music. I have been having a hard time having energy and space for my art practice for nearly two years and especially since things began to really escalate to the point that mobility was an issue last fall. This ongoing flare with such 'dynamic' (put nicely) changing symptoms has had me in a slew of tests, appointments, finding new specialists, drug and supplement 'experiments' -- plus the pain, brainfog, neurological anomalies, gi distress, sensory sensitivity, etc etc ...of it all. I am aware that not making art has depleted me, even though I did not have, and could not have had, energy for it-- it is part of who I am that needs to manifest. This month, I am committed to finding creativity-- in small ways and big. I have little daily practices I have started, which helps me feel connected, like I have done 'something' even in the most flared state. Making small gestures towards creativity gives me profound sustenance, as essential as any treatment or medication!
This is lovely, Hollis. What are your daily creative practices? And congratulations on your big win and your big lesson! This sounds really wonderful - and that's a really interesting point about elevated sympathetic activity with dysautonomia - I've not thought of it that way before!
Natasha: I have a notebook I write one word or phrase that captures a sensation I had -- it sort of serves like a daily sensory flip book. I also try to read one poem out loud (before dinner) and plate my food and take a picture of it (endless meal pics in my insta stories) which helps me feel more excited and appreciative to eat as eating causes more symptoms. And YES managing being less resistant to my symptoms has actually helped the physiologically-- not that I am perfect at this by ANY means. That does not mean thinking they are a 'gift' or even being 'present' to them (distraction from pain is important!)-- just less resistant and fighting of them.
Ooh i love your idea of a daily creative practice!
Yes! I remember writing a piece on tools to help people manage dislocations (years ago) and one of the first tips that was shared by the expert physio was try to stay as calm as possible as if you get really tensed and stressed, it's going to make it so much more difficult. It sounds like an impossible task, doesn't it? But over time, I think learning to accept the symptoms in the moment really can help with the emotional stress that they cause. I definitely noticed that with my PoTS symptoms (interestingly, I was able to unravel the physical anxiety that then caused the brain anxiety as my body was looking for the tiger in the room - and being able to recognise where those symptoms were coming from made me feel less scared and frustrated by them. Or, I suppose, a more extreme example, I used to get very severe and scary psychological feelings before my periods. It used to be extremely upsetting - now I look at my app, know what it is, and whilst it's difficult, I can kind of just be like...ok...this is what it is. It'll be gone soon).
I love those small routines and creative practices - they also seem flexible enough to work depending on how you're feeling on any given day!
I love this and have similar practices, Hollis! Creating easefulness in body and mind is a huge part of my symptom management too.
Hollis thanks for sharing and for you insight into your creative process. I really resonated with what you said about not fighting your situation, but accepting, that has been the biggest shift for me. And finding small manageable daily creative habits that connects me to myself and my bigger goals are so important to me. Thank you for sharing and good luck with your projects
Thank you, Claire!
So grateful, Hollis, for your articulation of grieving. I also identify with the dysautonomia flares being intensified by anxiety. I wish you the best for your creative practices.
And I you, Bea!
hi hollis, find your approach to creativity really inspiring. thank you for sharing. I also try to make art and when I first had to pace that part of myself I found it so, so, so hard. I've also just taken a photo of a pretty part of a leaf in my home or drawn using my phone notes app! I totally relate to you saying 'it's part of who I am that needs to manifest'.
hope your enjoy finding your creativity this month xxx
Do you have a way of sharing your photography- I'd love to see!
I have an instagram which is @bryonyattenburrow and share a mix of drawings and photos as I can. Do you share yoit work online as would love to see yours too x
I am at hollismickey.com and @apronon at Instagram (mostly just me and large veggies)
that'a great I look forward to checking them out
I hope that Sebastian is fully recovered for your wedding and that you both have a fantastic day!
Big win - sold my car after deciding to stop driving and got through the symptom flare up and emotional stress feeling happy with that choice.
Looking forward to - trying out wheelchairs and power attachments next week. I'm very excited for getting these and the freedom they'll give me.
Lesson I've learnt - needing to use my walking stick every time I go out for a solid month is not as big a deal as I thought it would be. I've used a stick for over a year but it lived in my car for when I went to the park and I rarely needed it for short walks from home. When I did I felt really uncomfortable about it because usually I don't look obviously disabled and I was worried people would be rude and nosy. Now I need it more because between stress and heat my mobility's not been great and it's fine! Lots of people are actually friendlier and give me more space when I've got it. Really this is just part of the ongoing lesson of nothing disability-related actually being as bad as I think it's going to be. Which is something I need to keep in mind for being nervous about the wheelchair.
Thank you, Emily!
These are all super great! I'm glad you're happy with the choice of selling your car! And good luck with testing out wheelchairs. I can definitely relate with the "big deal" thing - I found the mental weight that lifted off me when I used the right mobility aid (whilst obviously having its own things that come up) was so wonderful. I really hope it helps you!
If it helps, I've found decorating a mobility device to be both a fun way to express yourself *and* a neutralizing conversation piece for people who might be unintentionally rude about your disability. I have to rent scooters when I go on vacation and will be walking more than a few blocks, and I carry vinyl stickers on cardboard and string them around my scooter with ribbon and LED lights. Instead of getting rude looks now, I get to make people bemused and less scared of the girl in the chair. I hope you find a whole delightful realm of freedom in your new mobility aids!
That's brilliant! I love that way of getting round not being able to do anything permanent to a rented scooter. I know I want rainbow wheel spokes but I don't know yet what other decorations I might have. I'm trying chairs and attachments out this morning and very excited for it!
Rainbow wheel spokes sounds delightful! I hope your found some good chairs and attachments, and that the excitement continues.
I'm even more excited now! I had so much fun and I can't wait until I've actually got them. Just need to check a couple of things and then I can get them 😁
Eeeeeee congrats!
I love this! It brings a smile to my face just envisioning it!
My dream is to one day attach a bubble wand to my ECV. :D
Your awareness of needs and supports inspires me- thank you for sharing.
My biggest win recently was being able to visit my very elderly grandmother in her care home for the first time in two years. I’ve not been able to go before now due to covid rules/distance so was very thankful for being able to see her.
I am looking forward to going on holiday soon and my lesson learnt is to order a travel neck pillow so that I don’t start the holiday with a flare up of awful neck pain from the long car journey 😂 Hoping it will help!
Hope you have a wonderful wedding Natasha and enjoy some chill time before the big day!
Thank you so much! And I'm so happy that you got to see your grandmother - that's so special. And also can I say a million times yes to the neck pillow. I also have one that is broken that I wrap around my waist and I rest my arms on it and it helps so much having that support and not having my arms hanging down!
Praying you continue to test negative! I love these thoughtful questions. Here are my answers (without letting myself overthink my responses):
1. A big win has been having the courage to follow my gut. This past month, I've listened to its preachings as I navigated jumping into freelance, deciding to leave NY, and say no to plans that didn't serve me.
2. I'm looking forward to landing in Italy and reuniting with my friend from the UK! And then heading to my first wedding abroad in the north of France with my family.
3. You can't do it all. And you don't have to do it all. Give yourself the space to rest and recharge. Or else your body will make you rest for you (and wind up sick, which happened to me with a week-long sickness I think was COVID).
Hi Tatiana,
Thank you so much! And I love the non-overthought responses, thank you!
Those are all excellent big wins! Do you know where you're going to go when you leave New York?
And your Europe trips sounds BRILLIANT! Delicious food, excellent chilling out cultures and some beautiful stuff all around. I hope you have the loveliest time.
And I agree with Rachel, "You can't do it all. And you don't have to do it all" is such an important lesson. One I failed to recognise when Sebastian got sick this week as I was like RIGHT I'M GOING TO DO EVERYTHING AND LOOK AFTER HIM AND THE FLAT AND MYSELF AND EVERYTHING ELSE THAT WAS GOING ON TOO. It's like everything I knew just flew out the window.
I hope that you're recovering from your potential covid. I'm looking forward to reading your newsletter this week!
So resonating with not doing it all- which can be hard for a doer (as I find most of us are) to honor!
You can't do it all - such an important lesson. In a way, being ill has forced to think about what I really want to do, prioritise and enjoy those things more. Hope you enjoy Italy and the wedding in France!
It’s so true. Thank you so much!
Powerful prompts.... definitely got me thinking. Also made me realise I am not enjoying the little things enough or living mindfully!
My biggest win in July was, finishing a 800 page book - something I never thought I'd be able to do!
This month I am flying home for my dad's retirement, where I'll be giving a speech. The first time I'll be putting my writing in speech form. Hopefully the first of many!
Lessons. I think I am learning that despite challenges and set backs, I will still have happiness on my path. It will come.
Wow - that's a huge win! What book did you finish?
1Q84! 😱 book 1 and 2 combined, book 3 next ! Highly recommend by the way x
Ah that has been on my list for years!
Oh and just because I responded late last night, I'm now more brain aware and wanted to say good luck with your speech for your dad's retirement! I hope it goes well! It's so interesting the tweaks you have to make from written to verbal form.
And yay for happiness to come - I love that lesson.
Haaa well make sure you read it - this is your sign to read it!
'More brain aware' - my new fav saying.
hehe!
Question for everyone, somewhat related to the discussion. How do you bring structure to your day when life with chronic illness can be so unpredictable and/or limited in what you can do? My dog definitely helps structure my day. But I’m still figuring out what I need (instead of focusing on his needs)!
I'm really bad at doing this when I'm not being mindful about it or when things get in the way. I'm generally better at it in the evening - not so much in the day. At night, I will have dinner, wash my face, put my tech away and spend the evening on the sofa with Sebastian and then go to bed with a little set routine we always do. I really noticed how Sebastian having Covid and being in my room on my laptop before bed really made me feel so much worse.
I tend to find in terms of things I want to do (like learning Yiddish) or need to do (PT) is best when I can outsource it to other people so I have something in my diary and I just have to show up. Obviously, this isn't financially feasible for everyone, but if I was feeling a bit meh but could have done something adapted I might not do it if I didn't have a class/session.
I did have a nice morning routine until we moved and had a noisy neighbour in the morning when I started opening my laptop and just started working since I coudln't do anything restful - but actually I quite like just getting work done asap, but then I tend not to give myself more time to rest in the back end of the day. Trying to figure out how to build in rest, more than anything else. I do find timers helpful and I used to literally calendar block my entire day and that helped a lot - just haven't done it for a while!
My need to rest forms a lot of my structure. I try to be up around 9-9.30am, have a 15-30 minute lie down at lunch time, have an afternoon sleep and have another 15 minute lie down to meditate I'm the evening. Everything else is more unpredictable but that need stays pretty much constant.
I build in as much flexibility as possible. I try to remove all immediacy from tasks (I ask myself, "can I do this tomorrow instead?" and the answer is almost always yes, even if I have to then get creative with what I'm eating because the task is grocery shopping, or wear pajamas because I've run out of clean clothes). It's not an efficient life, but it's freeing to remember that I can run the dishes twice if I need to, or wait 3 weeks before I vacuum.
Because my nervous system in general throws tantrums when I lack schedule, my body has trained itself to wake between 6 and 7 every morning and sleep between 9 and 10 every evening. I set alarms on my phone to eat at regular intervals. I've outsourced some things (like putting my dog in a daycare 3 times a week, because I don't have the energy to play with her every time she's bored), so that adds some structure. And I like to read before bed as part of my easing-to-sleep routine.
I enjoy feeling productive/accomplished, so I journal ever day and I track: symptoms, what I did (and whether it was primarily physical, cognitive, or restful), and a list of 3-5 things I want to accomplish that day. Then I cross those off when I do them, and if I don't do them, I write them on the next day's list. That helps lessen the general stress of "so much to do" that can happen when specific tasks become vague obligations. And I write with fountain pens and pretty ink, so I feel creative in my journaling.
All that said, I've never been good at forming habits, so if it's something I think I should do regularly, I set alarms and create calendar items (even for things like "use facial scrub" or "get out the leftovers to thaw".
Thanks for asking this Bea! I feel like I too really struggle with this and also feel the sense of 'now' that all tasks seem to have the moment I open my eyes - which actually tends to be when my symptoms are most intense. I used to be a morning person and then want an early night but this has now changed and I did have a hard time accepting that shift. I tried to keep doing things to specific times but it suddenly clicked that it felt too constrictive although I knew it really helped others - so I came up with trying to just book end my days with one or two things ie make tea, eat banana and ten mins of meditation (lying down!) and then ten mins of meditation and hand mask before bed and once I found those generally stuck I could add one or two more extra things but I built it up slowly. also I try to add something as a treat everyday so it doesn't feel like every task is a chore. sometimes it's not doing the washing up or extra time in bed but just something to feel nice. does anyone else build in treats/me time?! x
I try to make sure I have something nice to do every day, usually something creative and listening to No Such Thing As A Fish when I eat lunch so I have something funny to enjoy. The thing that made the most difference was having a "day off" once a week. I can't work but looking after myself and my home is exhausting and I get fed up of relentlessly having to feed myself and do household jobs. Having a day just to do things that make me happy, with the bare minimum required for food and cleaning up, is brilliant. It breaks the week up and has been amazing for my mental health.
This is so great! Thank you for creating this space. Everyone here is so wise and kind.
Win:
After my best chihuahua friend, Bella, passed away earlier this year, we adopted a shepherd-mix whom we named Yoshi (after Mario’s pet dinosaur). He came to us from a shelter in Texas 1800 miles away, and so we only saw photos before he arrived. Annoyingly, the shelter slightly fibbed and told us he was 24 pounds and 24 inches fully grown. Turns out Yoshi is a giant, long-legged, long-bodied 40 pound baby with plenty of room to expand—and no training! He is adorable though :)
My win is that I’ve experienced such a sense of accomplishment training him. With a bigger, stronger dog than expected, we know it’s even more important that he’s well mannered. I’m not able to work in a job at present, so I often feel unproductive. And so it’s been just amazing to see Yoshi learn and improve his doggie life skills. I’ve taught him sit, lie down, stay, come, and leave it. I usually have the energy to walk him around the block once a day (my partner does the long walks), and Yoshi is learning to match my slow pace and sit patiently beside me when I need to rest. POTS dog!
Looking forward to:
Next week, I’m flying down to Nashville to participate in a four-day POTS study at Vanderbilt University. I’m really nervous about it. But I’m super excited for the week after when Mike and I will spend a week alone together in his parents’ beach house. I feel so lucky to have access to a beautiful, calm space by the sea where I can recover from two flights and three consecutive days of tilt table tests. I plan to lie in the shade on the balcony and watch the waves; consume as much home-renovation TV as my light/sound sensitivity will allow; and have lots of cups of tea and cuddles.
Lesson:
With my therapist, I’m learning to feel my emotions. I really don’t like it. I keep feeling like crying but I can’t cry, or I have weird cries with no tears. I’m at the beginning of Hollis’s grieving lesson, I think, and am heartened that you can possibly get to a place of more acceptance through feeling the grief. I’ve learned so far that to feel my emotions, I need to stop thinking as much (in that moment) and try to tune in with my body. It’s really hard. I’ve always numbed out from my body for various reasons. And now, feeling betrayed by my body with chronic illness, I’m even more reluctant to tune into it. But it does help. And I will keep trying.
Thanks again, Natasha, for the prompts! Wishing you a lovely wedding and Sebastian a speedy recovery!
Hi Bea,
I'm so sorry to hear about Bella, but also congratulations on finding Yoshi (bloody brilliant name!) and training him. I can see how that would be super rewarding.
I hope things go well with your PoTS study, and it's lovely to hear you have somewhere restful to recover. There's something so restorative about being by the water. We're going to the south of France for our honeymoon and I literally cannot wait.
That's a big job with your therapist - and it's really brave to get started on that. I always used to joke that I have no emotions, but I've had to work on that too. I hope your therapist is supportive and helps you to start to unlock those feelings.
And thank you so much!
Yay Yoshi! Are you training him to be a Service Dog? He sounds like he has a great temperament for it. And well done you, on the obedience and leash skills training. Sounds like you make a good team.
I just want to say that grief is for sure a process, and although feelings are annoying (or I think so, anyway), there is a beauty and a lightness in the journey of acceptance, patience, and release that grief teaches us. And I hope you find that to be the case, too.
Sorry to hear that Sebastian has Covid - really hope he feels better soon and that you keep testing negative.
How exciting that your wedding day is nearly here!
Congrats on your progress with Yiddish. It's so magical when something suddenly clicks and you're like, wait a minute I can understand this!
It's such a lovely idea to use these prompts to share with the chat room. Here are mine below:
Big Win: really enjoyed a favourite film I hadn't watched in a good long while, and it had me laughing and beaming at its happy mood. (It was 'Singing in the Rain'!)
Looking forward to: finding joy in the small things. this last month has seen so many plans fall through (some symptom related, some related to other things). I started to just refocus on the tiny things I liked about my home. my bookcase. my plants. my soft furnishings. postcards on my fridge. really hope to keep finding this curiosity throughout the next month and looking forward to the difference this can make.
Lesson I have learnt: becoming a tiny bit better at not blaming myself and being horrible to myself in my own mind when symptoms cause me to cancel something I've been looking forward to. It felt like this was a theme this last month and I was actually really proud of myself for realising that I was a lot less mean to myself about it.
B x
Thank you so much and thank you for sharing your lovely win and what you're lookig forward to. Learning to appreciate the small things (especially if you're not someone who naturally notices them) can be a really big step and quite game-changing. I've been finding a lot of joy in the giant sunflowers I bought last week. Every time I see them I'm like "OH HOW NICE ARE THESE SUNFLOWERS". It has been several days of it so far!
And you should be super proud for being less mean to yourself - like with everything that is a process, isn't it. Recognising when things aren't your fault, or when you're doing it for a restorative and kind reason.
Thank you Natasha. Sunflowers are especially captivating aren't they? Nice to think of them brightening up your day too. I definitely used to be more aware of simple pleasures but have lost touch with that a bit. Nice to be refinding it again. It seems to make everything have more space and joy in it.
Bryony thank you for sharing your lessons learnt, it really resonated with me, I’m recovering from the harsh inner critic that often won, slowly trying to move towards self acceptance and self love. It sounds a bit woo woo, or it does to a northern Brit, but it really turned around my approach and life felt a lot less hostile
I feel you with the 'woo woo' bit. It's taken the most conscious rethinking on my part to become kinder to myself. I'm glad that you have found that too.
My big win is that I finished sewing my beach robie. It felt so good to accomplish something, and is my first finished piece of sewing since relearning how to sew. Just need to actually get the energy to use it!
I’m really looking forward to going on a camping holiday this month, and just a change of scene from my sofa :D
My biggest lesson has been about how important my routine is. This month I’ve swapped around days of work and rest days to fit other people’s schedules, resulting in crashing and PEM every time. Sometimes I doubt how ill I am, but when I chuck my management strategies out the window it doesn’t go well!
Hi Rachel - oh that sounds lovely! Do you have a picture of it?
I hope you have a lovely time camping - where will you be setting your tent?!
And oh gosh I can relate to the issues with moving routine SO much!
Not taken one yet - thanks for the reminder! Although no idea how to post on here, be lovely if we could as sounds like lots of creative people here!
I'm going camping on two islands called Eigg and Canna off the West coast of Scotland. Both remote and with tiny populations (having to take all my food with me), but hopefully very quiet and chill. Looking forward to either reading/ sewing in the fields and on the beach, and maybe some short walks if energy allows
It's so hard with routine as sometimes it is unavoidable, but definitely need to put my foot down when there is the option
Second that, would love to see your sewing, I share a lot of my projects on Instagram @restandrestoration and sewing brings such a sense of accomplishment that I never knew existed and continued joy when you wear the thing! Happy making and happy holidays
Just given you a follow, your stuff is so cool!
Absolutely! And wow, that sounds perfect. I hope you have a lovely time and can really get that rest that you deserve!
Thanks! Have a lovely August too and wishing you the best for your wedding
Thank you!
Totally routine has been essential for me, though it can be frustrating for those around, creating patterns helps support each moment.
Yep, just need to stick to our guns and stick to the routine. I've definitely read somewhere that the more often we do things in routine, the less the brain has to think about it and lowers the cognitive load, which would totally make sense (and also why we need to follow them)
Yes!
Hello again! I hope Sebastian is on the mend and that you've stayed healthy *and* not exhausted yourself trying to do everything whilst he's ill.
July flew by for me. My biggest win was going to a week-long camp and not crashing there or after I got home. I was very merrily surprised! I hope this means I'm getting better about managing my physical form. I *ought* to say I'm looking forward to my birthday, which is at the end of this month, but I find myself so easily overwhelmed these days that I'm preferring not to even think about it. My anxiety has been high, thanks to new meds my doc put me on for the cognitive function decline I've been experiencing sharply this year, so I'd say my biggest lesson learned recently is to ground myself every day. Being in touch with my body, feeling my connection to the world around me, helps remind me to prioritize myself over all the distracting stress white noise bouncing around my brain.
Hello hello! Thank you - he's testing negative and I'm literally waiting for what will be my last daily Covid test as we speak.
That's wonderful news about the week-long camp! I'm sorry to hear you've been experiencing a lot of anxiety recently, side effects can often feel worse than what we're dealing with huh. I'm glad that you've found grounding to be helpful. Even if you're not looking forward to your birthday, a very quiet whisper of a Happy Birthday for later this month.
Awww thank you. :)
My big win has been sharing my writing and experience of living with chronic illness over on Substack, I didn’t realize how much shame I carried around with me, wishing I had ‘a more fixable’ less invisible illness. I didn’t get any negative backlash instead I just connected with other people in a similar boat. I’m looking forward to a trip to Rome next month, third time lucky going on this trip. The biggest lesson I’ve learnt or rather relearnt is the power of staying in your own lane. I really loved these prompts, it’s so important to celebrate any wins, especially when progress is not always visible. Wishing your partner a speedy recovery and hope you can enjoy the build up to your wedding.
I feel you-- such a challenge to be seen with chronic illness in many places, virtual community has been a balm to me.
Seconded.
Yes Claire!!!!
Hey yaz good peeps ,
I am Kai , a care giver in Australia . My client has Tourette syndrome . The swearing varient . It has it's moments in the sun . In full obnoxious glory . My client lost one eye on a bus from assault by a drunk. No excuse for that. Her other eye has had eight long surgeries while she has been fully awake. I cannot imagine her terror . Anesthesia was deemed too dangerous due to lung debilities . Chronic Obstructive Pulmonary Disease
( COPD ) . My client cannot be named here. I must respect privacy and protect her . Why am I talking here ? I like to think of it this way good people ; I was bitching about the hot asphalt , once while barefoot at the local icecream van outside a swimming pool. I got my icecream cone . A guy in a wheelchair had no legs . He could not move himself . He had a child acout 8 or 9 years old pushing him. The child asked for icecream , but the young man in the was too poor and had only enough for bread. I stopped to chat and bought both an icecream . He had crashed a motorcycle and was quad disabled . The child was his son and primary carer . His wife left him and took their older daughter after the accident . The divorce took nearly all his compensation . I never saw them after that , but I remember the moment and always say " No matter how bad it is , or gets , some poor soul is out there worse off than me .Battle it out . I can live with this , or , beat it. What is , is. Accept it ." Words are cheap , I know . I care for someone who cannot care for themselves . I have done so for over 30 years. Why , No ,she is not related. She wasa perfect stranger . I know in myself that social injustice needs fixing. If I do not act , then I am part of the injustice but condoning it by ignoring it. Thankfully the wheels are turning .Australia has the National Disability Insurance Scheme
( NDIS) whereby elegible recognised disability clients are endowed a lump sum of government cash to use on services such as physio , cleaning , laundry , night nurses , meal preparation , social activities , homecare in general . What a wonderful idea . Where there is life , there is hope. Hope is eternal . I end with prayers for your healing lwith ove and gace . Power to you all .
Kai .