When you're chronically ill you can't push your body the way non disabled people do. You have to learn to rest. There's few words more damaging to us than the 'coulda, woulda, shouldas'
Yes to all of it. When I'm trying to rest properly I go for a 4 pillow rest, one under head, one under each arm and one under knees. If I'm in the right headspace I'll listen to a yoga nidra and relax muscles. I should be doing that now but I'm feeling the pull of Substack
Oh I used to do that! Except I needed the pillow under my right arm, not both, because that was the one full of nerve pain, and the pillow that wasn’t under my left arm would go under my head/back so I was kind of propped up a bit. Add a cat & it’s an instant nap.
I'm forced to rest right now. Been battling a sinus infection since Friday. My PCP ordered antibiotics today, without having to see him. I get so many sinus infections that I have a standard plan of care. Otherwise I would have to wait until next week to see him. My temp was 96.6 this morning, and the threshold for sepsis is 96.8. if he couldn't give me a script today, I was probably going to go to the Emergency Room for suspected sepsis.
Never a dull moment in the world of chronic illness.
Oh no! I’m sorry! I used to get sinus infections all the time - they were brutal. Mine thankfully resolved with a major dietary overhaul and controlling my mcas … but I suspect they would come back if either of those things changed.
I hope the meds work their magic and you’re feeling better soon.
Oh I’m so sorry I’m glad they finally sent it. I get a sinus infection or an ear infection almost every fall no matter how hard I try to stay on top of my ragweed allergies I end up with clogged sinuses. Last week I was going to call my doctor for antibiotics, but I think I made it through. I guess it took my immune system a little while longer than usual. I’m not surprised.
Yes to highlighting the gaslighting we do to ourselves!! I’m becoming more aware of this lately. Seeing it in myself, seeing it in others.
I’ve been writing a mini series of short posts on recovery this week and all the gaslighting I did when I was chronically fatigued because recovery of sorts had taken place and I believed I should be doing more. I’m now intrigued with recovery, what it means to us individually, what we believe it to be, how we judge it - in ourselves and others. I’m learned it’s as complex and misunderstood as the illness itself.
Learning to slow down was up there with the greatest challenges on this journey. Learning and relearning to rest is a forever practice - for all the reasons you mention. It’s the most frequent need my body has demanded of me the most in many years. so continuing to bring it back and making it a priority is constant. I’m in the struggle of slowing down and allowing rest again this week - it’s the first time I’ve realised that “it’s ok to be in the struggle”
“It’s ok to be in the struggle” is so perfect. Because as you said you have to learn it and relearn it. Plus individual warning signs and thresholds for needing radical rest will ebb and flow with the severity of one’s condition. Sometimes I can do more - sometimes less. Sometimes the warning signs are incredibly obvious - sometimes I miss them completely.
I think forgiveness is key - and probably what I’m worst at. We need to forgive ourselves when we don’t get it right - and let go of the guilt so we can get back to resting. Guilt and gaslighting just impede healing anyways.
Absolutely forgiveness and self compassion. I’m always being guided towards being tender and compassionate with myself. Another forever practice. As you so aptly shared “I try my best”. I try not to ask any more of myself. Recently fallen into a little self blame. I remind myself I am human. A human being living a human experience.
Yes the blame doesn’t help anyone and yet is a perfectly natural and human response. I feel like guilt, regret and blame are three of the most energy sucking and non productive emotions I struggle with.
Intellectually I can KNOW they’re pointless - but turning them off is a bigger battle.
Gaslighting ourselves is so dangerous. I didn’t even realize I was doing it to myself until 2020 came around and we were forced to not have to run around and do errands and doctors appointments in person. I actually thought I got my MECFS into remission with LDN and some forced rest. Then I started doing more and I realized I wasn’t actually in remission I was just doing the proper level of activity for my pacing.
And I’m upset that doctors are pushing back against telemedicine lately, Medicare approved it until the end of 2025 so I feel like I should be able to have telemedicine until the end of 2025. So I push back too.
it’s so common with mental health patients I’m surprised I didn’t recognize it sooner when I did it to myself.
You know, people will take meds because they need them and the meds work so well they feel fine. And after feeling fine for a long time they think “hey I don’t really need these meds I’m fine.” And if they stop taking the meds they remember why they needed them, but it’s problematic and disruptive. Just like when I forget that I have to be better at pacing & that I feel good BECAUSE I have been careful. Now is not the time to stop being careful. ❤️
These are such important insights Maggie! Too often we are gaslighting ourselves so strongly that we may not even realize how sick we've become That's happened to me as well - and when something forces me to slow down I suddenly realize 'oh I wasn't doing as well as I thought'
Telemedicine was/is a huge part of that. Appointments took SO much out of me and I couldn't believe how spoon saving virtual appointments have been. We're still allowing them in Canada - but doctors are paid less for them so some don't want to do it. I push back too.
Oops, I meant thanks not yes! I’m at the optician’s waiting a check on my eye that has had a foreign body embedded and removed from it this week. Things are blurry at the moment in more ways than one…
Oh thanks. It went well. I’m reacting to the antibiotics obvs. 🙄
It hurts to roll my eyes 👀 😭
Of course, I went straight from that to an investigative internal pelvic scan where everything was “normal” yet I’m sure I have progesterone intolerance from my Mirena and it’s trying to kill me via extreme bloating and severe depression.
Progesterone made me so angry. It was fine for a couple months and it really helped with my endometriosis pain, but then the rage crept in and I had no patience with anything or anyone. I couldn’t even stand my cat and he’s my favorite thing in the world.
Yes, it’s an intrauterine device. Does topical progesterone get the best results? Otherwise what about Depo-provera (?) injection or implant? I must say, I have no idea sorry x
“In proportion as the machine is improved and performs man's work with an ever increasing rapidity and exactness, the labourer, instead of prolonging his former rest times, redoubles his ardour, as if he wished to rival the machine. O, absurd and murderous competition!”
Totally, all these tools should in theory help us to work less and hence rest more or do things we like to do. But instead it gets "solved" by creating Bullshit Jobs (according to David Graeber). That book by Lafargue contains many more fantastic quotes.
On top of chronic illness I have ADHD, which adds to the challenge of true rest. Meds, meditation, breathing, can all help a little, but not engaging my brain usually leads to more brain "noise." I try to find a very relaxing audiobook and sometimes that helps.
Thank you for sharing! Do you know Madelleine Muller? She writes The Bed Perspective and publishes some wonderful guided meditations for people with chronic illness. They might be a good option as well?
Do you have a favourite audiobook? I haven't been able to use them - my brain wanders too much.
I don't know Maddelleine Muller but I will definitely check her out! I love anything by Terry Pratchett when I need something light. I know his stories so well that I don't have to listen closely. 🙂
I appreciate this article so much. I used to talk about how when I first contracted mono and I was having MECFS symptoms that wouldn’t go away I did some radical rest for about six months, and then I felt well enough to slowly ease back into work, and after two months I was working full-time again like nothing had ever happened. And I had eight years before an accident that caused a C-spine injury brought it all right back, I woke up the next day feeling like I had mono all over again and I’ve been disabled by MECFS ever since.
But I stopped talking about it after some lady came for me on social media, apparently the words “radical rest” really made her angry. I realize that not everyone can do it, but I didn’t have a choice. I wasn’t well enough to make a choice, I literally had to be in bed with my cat almost all the time.
And kitties really make laying in a dark room doing nothing a lot better. Having a warm purring cat on my lap is really relaxing and I’ll usually fall right to sleep.
Thank you for sharing Maggie. I've had mono flare ups as well and they set back my baseline in a big way. If I don't immediately stop and rest I pay the price.
That's interesting about the term 'radical rest'... I had more unsubscribes off this article than anything else I've written. I try not to think about it because it's out of my control - but I wonder if that term is offensive to some?
I tried to be gentle in the article as I know it's not always possible - but I think all too often when it IS possible we choose not to do it and then cause harm.
Oh wow. I wonder if it’s people who are single parents or who can’t stop working, and the term radical rest pisses them off because they can’t even regular rest. I’m sorry to hear about the unsubscribes. 😢
Fabulous article on rest! As a chemo patient I’m stuck too with my brain running like a freight train and my body still on the platform. I’ve been trying box breathing to get my resting heart rate down and some meditation but the other challenge is lying too long and risking blood clots. Right now fighting hives and edema; woke up too early so I took my meds. Also staying off toxic social media.
I hope your day has improved and you got the rest you needed! Would things like ankle pumps and calf raises help to prevent clots while allowing you to remain horizontal? I do them to stave off the deconditionning that is so harmful when you have POTS.
Thank you so much for saying this! It can be hard to put myself out there sometimes - especially with the more vulnerable pieces like this one. It helps to know that it is comforting people in some small way 💜
I hope you got some good rest after commenting - and hopefully I will be doing the same shortly!
You're welcome! Your words have brought me a lot of comfort this month [and many months before then too] as this month has been one of the worst months for me in many years. I can only hope do to the same back to you, the person who has given me a lot of hope when I felt like there was none. ♥ :]
I try my best to live up to a quote I once saw in a meme and have since taken to heart which is:
"Never admire quietly. If I admire something about someone, I tell them. We humans are so fragile. It's important we give people their flowers while they are still here. Never admire quietly" - Chimamanda Adichie
I did get some sleep more or less! I hope you get some good sleep too! I'm gonna be trying here in a few minutes to pass out lol. At least I'm sleeping at night now and not in the middle of the day! [even though it's like midnight right now but hey it's better than yesterday when I didn't fall asleep until like 8 in the morning lmao]
My back/shoulder is still out but not as bad as yesterday! I also could breathe a bit better today. Slowly but surely, one day at a time, things are looking up. Soon enough they'll come crashing down again like always but right now's the good portion of the roller-coaster and I'm going to do my best to enjoy it while it lasts lol.
side note: I just found out how to subscribe to your substack thingy! :D Sorry it took so long, I'm new to substack and barely understand how it works half the time lol
Oh no need to be sorry - I appreciate you subscribing and leaving such a kind comment! We all need encouragement from time to time - putting myself out there like this can be really scary and knowing that it helps others makes it worth it.
I meant to do it when I first commented but didn't know how which is why I wanted to apologize, however I figured it out though >:D !
I appreciate you putting yourself out there! ♥ :] ! Its helped me put myself back out there after spending a very long time being isolated and withdrawn from online spaces that weren't with people I already knew.
So, once again, thank you, for not only putting yourself out there for others like me, but for helping me better myself. ♥
Well said. I love to take extra time to do nothing but solid rest on the weekends once in a while. I'm always confused when people say I'm being "unproductive". I swear my productivity and focus is exponentially better for a long while after, every time.
It makes sense that your productivity would improve - our brains need rest as much as our bodies. Once we get that down time we can often come back clearer and more focused than before!
As per usual, another beautifully written piece. I was very used to doing life like a race horse. And your description of what your brain does mirrors my own experience, it's an avalanche of meaningless random memories like flipping through a disorganized card catalog that Won't. Shut. Up. These days, radical rest has become essential. I often don't catch the early signs that I need it, but am getting better. Somewhat. Sometime I knit on something very simple, I find repetitive motion helps. Sometimes it's the noise canceling headphones with nothing playing and lights low or off, a light cloth draped over my face - total sensory deprivation. Sometimes, it's Trazadone-assisted sleep. I'm learning!
thank you so much for your kind words - I think I needed them extra this week.
I know what you mean about the meaningless card catalogue that just won’t stop. I can’t knit - but sometimes find doing very repetitive lymphatic drainage exercises can help slow things down. The cloth over the face is a great tip (or ice to the back of the neck).
This is so powerful and timely. I am not chronically ill but I have anxiety. I get so mentally fatigued but am wired to just survive and do it. I've been working for years on changing that. It's hard. Your list of warning signs hit me hard. Yes to every one of those. Thank you for sharing.
You’re so welcome! I’m glad you found it helpful. I hate that so many of us suffer through these things - it can be so hard to really turn off and relax. Even when I have every one of the warning signs - there are times I still can’t stop myself from spinning out. But I’m working on it!
I just thought of something that really helps me when I'm feeling angry and frustrated at systems or people: Honest Meditations. You can find a free one on YouTube and they have a paid app that is really worth it for me. Just be warned, they're the most creative and hysterical *swear-filled* meditations you've ever heard...but they're genuinely good meditations! Giggling while meditating is so cathartic!
Maybe also the vitamin D? I used to love laying out in the sun to get my dose of D but now I'm allergic to the sun lol. Supplements just aren't the same.
The more stories I read about what you and so many others are going through, the angrier I get at the callous, misinformed, monsters who have been largely responsible for the situation. I guess anger isn't good, but sometimes it feels good to smash a metaphorical plate against a brick wall.
Just as long as it's metaphorical! I'm angry too - I think we all are. I just posted on Notes about an advert in London about assisted dying. It's wildly inappropriate. We seem to be rapidly moving towards a world where people like me are deemed wholly and completely expendable - and it's terrifying.
Yes to all of it. When I'm trying to rest properly I go for a 4 pillow rest, one under head, one under each arm and one under knees. If I'm in the right headspace I'll listen to a yoga nidra and relax muscles. I should be doing that now but I'm feeling the pull of Substack
I hope you can get back to resting soon - I know the pull of Substack all too well!
Have you ever tried a pregnancy pillow? I’m going to talk about it more in my next post article. It’s basically 4 pillows in one!
I used to have one but is was more beanbag like, I find pillows softer. If it was softer I see how that could work
Oh mind is soft like a pillow. Shame I can't add a photo to the replies!
Nice, yes I can see the attraction then!
Oh I used to do that! Except I needed the pillow under my right arm, not both, because that was the one full of nerve pain, and the pillow that wasn’t under my left arm would go under my head/back so I was kind of propped up a bit. Add a cat & it’s an instant nap.
Pillows and kitties - a prescription for rest!
I'm forced to rest right now. Been battling a sinus infection since Friday. My PCP ordered antibiotics today, without having to see him. I get so many sinus infections that I have a standard plan of care. Otherwise I would have to wait until next week to see him. My temp was 96.6 this morning, and the threshold for sepsis is 96.8. if he couldn't give me a script today, I was probably going to go to the Emergency Room for suspected sepsis.
Never a dull moment in the world of chronic illness.
Oh no! I’m sorry! I used to get sinus infections all the time - they were brutal. Mine thankfully resolved with a major dietary overhaul and controlling my mcas … but I suspect they would come back if either of those things changed.
I hope the meds work their magic and you’re feeling better soon.
Oh I’m so sorry I’m glad they finally sent it. I get a sinus infection or an ear infection almost every fall no matter how hard I try to stay on top of my ragweed allergies I end up with clogged sinuses. Last week I was going to call my doctor for antibiotics, but I think I made it through. I guess it took my immune system a little while longer than usual. I’m not surprised.
Thank you. Yeah, I don't have an immune system as a transplant recipient. Typing this from bed as I continue the enforced resting.
Yes to highlighting the gaslighting we do to ourselves!! I’m becoming more aware of this lately. Seeing it in myself, seeing it in others.
I’ve been writing a mini series of short posts on recovery this week and all the gaslighting I did when I was chronically fatigued because recovery of sorts had taken place and I believed I should be doing more. I’m now intrigued with recovery, what it means to us individually, what we believe it to be, how we judge it - in ourselves and others. I’m learned it’s as complex and misunderstood as the illness itself.
Learning to slow down was up there with the greatest challenges on this journey. Learning and relearning to rest is a forever practice - for all the reasons you mention. It’s the most frequent need my body has demanded of me the most in many years. so continuing to bring it back and making it a priority is constant. I’m in the struggle of slowing down and allowing rest again this week - it’s the first time I’ve realised that “it’s ok to be in the struggle”
“It’s ok to be in the struggle” is so perfect. Because as you said you have to learn it and relearn it. Plus individual warning signs and thresholds for needing radical rest will ebb and flow with the severity of one’s condition. Sometimes I can do more - sometimes less. Sometimes the warning signs are incredibly obvious - sometimes I miss them completely.
I think forgiveness is key - and probably what I’m worst at. We need to forgive ourselves when we don’t get it right - and let go of the guilt so we can get back to resting. Guilt and gaslighting just impede healing anyways.
Absolutely forgiveness and self compassion. I’m always being guided towards being tender and compassionate with myself. Another forever practice. As you so aptly shared “I try my best”. I try not to ask any more of myself. Recently fallen into a little self blame. I remind myself I am human. A human being living a human experience.
Yes the blame doesn’t help anyone and yet is a perfectly natural and human response. I feel like guilt, regret and blame are three of the most energy sucking and non productive emotions I struggle with.
Intellectually I can KNOW they’re pointless - but turning them off is a bigger battle.
Gaslighting ourselves is so dangerous. I didn’t even realize I was doing it to myself until 2020 came around and we were forced to not have to run around and do errands and doctors appointments in person. I actually thought I got my MECFS into remission with LDN and some forced rest. Then I started doing more and I realized I wasn’t actually in remission I was just doing the proper level of activity for my pacing.
And I’m upset that doctors are pushing back against telemedicine lately, Medicare approved it until the end of 2025 so I feel like I should be able to have telemedicine until the end of 2025. So I push back too.
Wow, that is really insightful! Thanks for sharing that because I’m starting to feel like there’s a pattern and many of us maybe experiencing it.
I am sorry to hear about the telemedicine. You’d think it was to their advantage, as well as your own, to continue with it.
it’s so common with mental health patients I’m surprised I didn’t recognize it sooner when I did it to myself.
You know, people will take meds because they need them and the meds work so well they feel fine. And after feeling fine for a long time they think “hey I don’t really need these meds I’m fine.” And if they stop taking the meds they remember why they needed them, but it’s problematic and disruptive. Just like when I forget that I have to be better at pacing & that I feel good BECAUSE I have been careful. Now is not the time to stop being careful. ❤️
These are such important insights Maggie! Too often we are gaslighting ourselves so strongly that we may not even realize how sick we've become That's happened to me as well - and when something forces me to slow down I suddenly realize 'oh I wasn't doing as well as I thought'
Telemedicine was/is a huge part of that. Appointments took SO much out of me and I couldn't believe how spoon saving virtual appointments have been. We're still allowing them in Canada - but doctors are paid less for them so some don't want to do it. I push back too.
Yes for writing this. My body and mind need to rest but it always seems so out of reach 😭
Oops, I meant thanks not yes! I’m at the optician’s waiting a check on my eye that has had a foreign body embedded and removed from it this week. Things are blurry at the moment in more ways than one…
Yikes! How did the appointment go? Honestly my brain is so tired it didn’t even notice the error lol
Oh thanks. It went well. I’m reacting to the antibiotics obvs. 🙄
It hurts to roll my eyes 👀 😭
Of course, I went straight from that to an investigative internal pelvic scan where everything was “normal” yet I’m sure I have progesterone intolerance from my Mirena and it’s trying to kill me via extreme bloating and severe depression.
But you know, all fine. My labs look great ☠️
I know that feeling all too well - antibiotics and me do not get along.
And the dreaded “your tests are all normal”. I always want to scream “then you didn’t run the right tests!”
Yes! Argh! 😭
Progesterone made me so angry. It was fine for a couple months and it really helped with my endometriosis pain, but then the rage crept in and I had no patience with anything or anyone. I couldn’t even stand my cat and he’s my favorite thing in the world.
I’m pretty much simmering with rage at all times 😡
I've been debating trying it for my MCAS but you guys have definitely given me second thoughts. I already get ragey when my neuroinflammation acts up!
Yes, it’s an intrauterine device. Does topical progesterone get the best results? Otherwise what about Depo-provera (?) injection or implant? I must say, I have no idea sorry x
Thanks for the reminder of the importance of rest. Bob
It’s such a simple concept in theory - much harder in practice!
“In proportion as the machine is improved and performs man's work with an ever increasing rapidity and exactness, the labourer, instead of prolonging his former rest times, redoubles his ardour, as if he wished to rival the machine. O, absurd and murderous competition!”
~ Paul Lafargue, The Right to Be Lazy
What a great quote! Thank you for sharing. Feels extra apt in these times of rising AI too…
Totally, all these tools should in theory help us to work less and hence rest more or do things we like to do. But instead it gets "solved" by creating Bullshit Jobs (according to David Graeber). That book by Lafargue contains many more fantastic quotes.
Another example of just how much we look down on resting - even when it's possible and preferable we find a way to make it not permitted.
On top of chronic illness I have ADHD, which adds to the challenge of true rest. Meds, meditation, breathing, can all help a little, but not engaging my brain usually leads to more brain "noise." I try to find a very relaxing audiobook and sometimes that helps.
Thank you for sharing! Do you know Madelleine Muller? She writes The Bed Perspective and publishes some wonderful guided meditations for people with chronic illness. They might be a good option as well?
Do you have a favourite audiobook? I haven't been able to use them - my brain wanders too much.
I don't know Maddelleine Muller but I will definitely check her out! I love anything by Terry Pratchett when I need something light. I know his stories so well that I don't have to listen closely. 🙂
I appreciate this article so much. I used to talk about how when I first contracted mono and I was having MECFS symptoms that wouldn’t go away I did some radical rest for about six months, and then I felt well enough to slowly ease back into work, and after two months I was working full-time again like nothing had ever happened. And I had eight years before an accident that caused a C-spine injury brought it all right back, I woke up the next day feeling like I had mono all over again and I’ve been disabled by MECFS ever since.
But I stopped talking about it after some lady came for me on social media, apparently the words “radical rest” really made her angry. I realize that not everyone can do it, but I didn’t have a choice. I wasn’t well enough to make a choice, I literally had to be in bed with my cat almost all the time.
And kitties really make laying in a dark room doing nothing a lot better. Having a warm purring cat on my lap is really relaxing and I’ll usually fall right to sleep.
Thank you for sharing Maggie. I've had mono flare ups as well and they set back my baseline in a big way. If I don't immediately stop and rest I pay the price.
That's interesting about the term 'radical rest'... I had more unsubscribes off this article than anything else I've written. I try not to think about it because it's out of my control - but I wonder if that term is offensive to some?
I tried to be gentle in the article as I know it's not always possible - but I think all too often when it IS possible we choose not to do it and then cause harm.
Oh wow. I wonder if it’s people who are single parents or who can’t stop working, and the term radical rest pisses them off because they can’t even regular rest. I’m sorry to hear about the unsubscribes. 😢
Fabulous article on rest! As a chemo patient I’m stuck too with my brain running like a freight train and my body still on the platform. I’ve been trying box breathing to get my resting heart rate down and some meditation but the other challenge is lying too long and risking blood clots. Right now fighting hives and edema; woke up too early so I took my meds. Also staying off toxic social media.
I hope your day has improved and you got the rest you needed! Would things like ankle pumps and calf raises help to prevent clots while allowing you to remain horizontal? I do them to stave off the deconditionning that is so harmful when you have POTS.
Thank you, Kelly. For this article and for sharing your journey constantly.
For showing me and others with chronic illness that we are not alone. It has helped me greatly during my times of strife.
I'm doing my best to unlearn these toxic behaviors, and I hope others do too.
♥
Be sure to rest too when you can.
I'm gonna be doing that here after I finish writing this.
Have a goodnight or good day, whenever you read this - and thank you for being an advocate I look up to.
Thank you so much for saying this! It can be hard to put myself out there sometimes - especially with the more vulnerable pieces like this one. It helps to know that it is comforting people in some small way 💜
I hope you got some good rest after commenting - and hopefully I will be doing the same shortly!
You're welcome! Your words have brought me a lot of comfort this month [and many months before then too] as this month has been one of the worst months for me in many years. I can only hope do to the same back to you, the person who has given me a lot of hope when I felt like there was none. ♥ :]
I try my best to live up to a quote I once saw in a meme and have since taken to heart which is:
"Never admire quietly. If I admire something about someone, I tell them. We humans are so fragile. It's important we give people their flowers while they are still here. Never admire quietly" - Chimamanda Adichie
I did get some sleep more or less! I hope you get some good sleep too! I'm gonna be trying here in a few minutes to pass out lol. At least I'm sleeping at night now and not in the middle of the day! [even though it's like midnight right now but hey it's better than yesterday when I didn't fall asleep until like 8 in the morning lmao]
My back/shoulder is still out but not as bad as yesterday! I also could breathe a bit better today. Slowly but surely, one day at a time, things are looking up. Soon enough they'll come crashing down again like always but right now's the good portion of the roller-coaster and I'm going to do my best to enjoy it while it lasts lol.
Sleep well, and thank you again for everything. ♥
side note: I just found out how to subscribe to your substack thingy! :D Sorry it took so long, I'm new to substack and barely understand how it works half the time lol
Oh no need to be sorry - I appreciate you subscribing and leaving such a kind comment! We all need encouragement from time to time - putting myself out there like this can be really scary and knowing that it helps others makes it worth it.
I meant to do it when I first commented but didn't know how which is why I wanted to apologize, however I figured it out though >:D !
I appreciate you putting yourself out there! ♥ :] ! Its helped me put myself back out there after spending a very long time being isolated and withdrawn from online spaces that weren't with people I already knew.
So, once again, thank you, for not only putting yourself out there for others like me, but for helping me better myself. ♥
Well said. I love to take extra time to do nothing but solid rest on the weekends once in a while. I'm always confused when people say I'm being "unproductive". I swear my productivity and focus is exponentially better for a long while after, every time.
It makes sense that your productivity would improve - our brains need rest as much as our bodies. Once we get that down time we can often come back clearer and more focused than before!
As per usual, another beautifully written piece. I was very used to doing life like a race horse. And your description of what your brain does mirrors my own experience, it's an avalanche of meaningless random memories like flipping through a disorganized card catalog that Won't. Shut. Up. These days, radical rest has become essential. I often don't catch the early signs that I need it, but am getting better. Somewhat. Sometime I knit on something very simple, I find repetitive motion helps. Sometimes it's the noise canceling headphones with nothing playing and lights low or off, a light cloth draped over my face - total sensory deprivation. Sometimes, it's Trazadone-assisted sleep. I'm learning!
thank you so much for your kind words - I think I needed them extra this week.
I know what you mean about the meaningless card catalogue that just won’t stop. I can’t knit - but sometimes find doing very repetitive lymphatic drainage exercises can help slow things down. The cloth over the face is a great tip (or ice to the back of the neck).
This is so powerful and timely. I am not chronically ill but I have anxiety. I get so mentally fatigued but am wired to just survive and do it. I've been working for years on changing that. It's hard. Your list of warning signs hit me hard. Yes to every one of those. Thank you for sharing.
You’re so welcome! I’m glad you found it helpful. I hate that so many of us suffer through these things - it can be so hard to really turn off and relax. Even when I have every one of the warning signs - there are times I still can’t stop myself from spinning out. But I’m working on it!
I'll certainly be working on it too!
I just thought of something that really helps me when I'm feeling angry and frustrated at systems or people: Honest Meditations. You can find a free one on YouTube and they have a paid app that is really worth it for me. Just be warned, they're the most creative and hysterical *swear-filled* meditations you've ever heard...but they're genuinely good meditations! Giggling while meditating is so cathartic!
I’m so glad you’ve found good ones that work for you! That’s half the battle - if you enjoy it you’re so much more likely to do it.
I became sicker after giving up sunbathing. I think that was my radical rest! 🤔😎
Maybe also the vitamin D? I used to love laying out in the sun to get my dose of D but now I'm allergic to the sun lol. Supplements just aren't the same.
Yes, supplements help somewhat. I have a therapeutic grade light box but nothing equals sunlight for me.
The more stories I read about what you and so many others are going through, the angrier I get at the callous, misinformed, monsters who have been largely responsible for the situation. I guess anger isn't good, but sometimes it feels good to smash a metaphorical plate against a brick wall.
Just as long as it's metaphorical! I'm angry too - I think we all are. I just posted on Notes about an advert in London about assisted dying. It's wildly inappropriate. We seem to be rapidly moving towards a world where people like me are deemed wholly and completely expendable - and it's terrifying.