Happy August, everyone!
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.
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!
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.
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!
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).
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.
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)!
This is so great! Thank you for creating this space. Everyone here is so wise and kind.
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.
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!
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.
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!
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.
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.
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 .