I’m honestly finding pacing, the most difficult thing to learn. My husband is my carer—he recently gave up work to set up a food business from home—the feelings I am having over my inability to help him are grim. Recent neuro symptoms have forced the penny to drop, prioritising rest(preferably guilt free) is not a whimsical luxury…my body literally stops functioning—meaning I fall(drop attack) or most recently, lose ability to speak.
I’m a mother to 3 children, it’s a near impossible task to balance.
I cannot imagine how to pace with three children, if you manage just a bit of pacing I think that would be a triumph. I learnt pacing the hard way, too. My body would just drop, literally.
This is so true, and something I've been thinking about a lot lately as I have had the privilege of some time to completely convalesce. I can't imagine what my life would be like if I were responsible for children or parents, or if my circumstances were different. And we absolutely need to be lifting each other up, not policing each other. Thanks for this!
I could have written this comment myself, word for word. It’s indeed been a great privilege for me as well. I don’t know how parents or caretakers do it.
For years we supported our daughter like your parents. We even moved country to a better climate for her. All was going very well till covid now we take turns taking care of eachother 😢
Fascinating and insightful read as always Madelleine.
Collectively, we have Such a complicated relationship with rest. The messages come thick and fast through school - you’re unable to keep up, you’re lazy.
You’re in bed, you’re lazy. You’re not working, you’re lazy. You’re chronically ill, you’re lazy. Your body is a machine, Rest when you retire.
I can see the confusion with rest being confused with cure. Rest was prescribed in the early medicine days as a cure for women. Forced rest.
And now like you say it’s been politicised.
It’s not too difficult to see why we have such a complicated relationship with it. Have we ever really understood it?
Slowing down was up there with one of the greatest struggles I had. Made possible by privilege. Yet still seen as selfish.
I eventually wrote an article on it that brought up some almighty grief. It went into my highest read and engaged overnight so this one really landed… is that why we Perhaps have such a complicated relationship with rest? Because it forces you to face parts of yourself that have long since been pushed down, ignored?
Loving your thoughts here Amber! And YES, it’s been mixed up as a cure for women who were blamed for not being able to handle modern life. I definitely do think that it can be uncomfortable to rest as we are faced with inner demons.
With Elhers-Danlos, the best strategy that works for me is "one day on, one day off." My body has shown me 100% the need for this strategy. It is critical for my real well-being not just the smile I wear. Truth is, as brilliant as it is for me, I can't always manage to actually pull it off!
Thank you for your wise words, Madelleine. Rest when I’m forced to it, when body and mind just can’t (like in a bad migraine or drop attack) is easy—and unavoidable— but pacing? Learning to stop before you have to, then learning to stop before you WANT to just to slowly build up a tiny reserve against the next time you can’t stop?
And having a dynamic illness, those lines will be different every day.
Part of the issue is that if a human can get up and do something, they will, yet we continue to call ourselves lazy thanks to internalized ableism. We beat ourselves up about all the tasks we haven’t been able to do… but recently I’ve noticed most people with ‘normal’ amounts of energy keep putting more on their to do list than they can possibly achieve, and then measure their self-worth against that too.
Rest is radical. And resting while anxious or guilty (or bored) isn’t very restful. I’m working on ways to make rest actually restful, while I have the privilege.
I have a carer for 2-3 hrs weekly and a fortnightly cleaner and still I know that I really need a couple more hours of carer. In fact if I had a housekeeper who would cook, clean, shop and do basic maintenance I suspect I would be able to rest properly and eventually work part time work again, maybe. A girl can dream…
I love this! And yes, it’s easy to rest when your body breaks…. but before that… arg! Honestly, it is such a sound investment to give disabled and chronically ill people more care hours, some of us would be able to work a bit or just feel better.
Absolutely. They’ll give buckets of cash to send a cancer kiddie to Disneyland, but won’t fund the chronically ill to the level of dignity. (I think our societies can probably manage both if they stop subsidizing billionaires.)
Pacing was also very difficult for me to learn - learning to stop and rest before I’ve pushed it to 100% and need to rest took a long time. I’m lucky to have a husband who supports me with this - I can’t imagine how I’d have got here without the support.
There are some people in my life who give me the side eye when I rest and others who tell me when they think they spots signs that I need to rest. Some people don't seem to understand bodies behave differently than their own and that is completely okay.
Never heard of pacing until long covid. Now 4 years in, couldn't do without it! Even on days that I feel pretty good, I pace. I also lie down in the afternoon for an hour at least. Hubby sometimes has to make me, he knows when I'm about to hit the preferable wall. I am blessed to have him that is for sure.
“Pacing is labour, but a kind of labour that is devalued, frowned upon even, because it doesn’t generate economic profit.” Yess! So good, thanks for this piece
Pacing literally saved me from the downward spiral I was in. My psychologist taught me how to do it (before I was even properly diagnosed with MECFS).
I too have a lot of privilege. My spouse stepped up in ways I would never have imagined and protects my baseline as if it was his own.
And you’re correct - it’s a tool, not a cure. But if it keeps me from getting worse, it will have to do.
Keep it up!
Yup, for many of us it’s the best tool in the box. I love that your spouse is helping you! 🩷💙
My husband does the same for me and I agree too that it's such a privilege to have that level of unwavering support.
Pacing is hard but I have to do it!
It’s the hardest thing I’ve ever done, and I’ve done a lot of difficult things. Consistency. Planning. Monitoring. Cancelling when needed.
We’re very lucky. Too many men leave when their wives become permanently sick.
Agreed!
I also do consistency, planning, tracking... you name it! There are no days off from this.
I’m honestly finding pacing, the most difficult thing to learn. My husband is my carer—he recently gave up work to set up a food business from home—the feelings I am having over my inability to help him are grim. Recent neuro symptoms have forced the penny to drop, prioritising rest(preferably guilt free) is not a whimsical luxury…my body literally stops functioning—meaning I fall(drop attack) or most recently, lose ability to speak.
I’m a mother to 3 children, it’s a near impossible task to balance.
I cannot imagine how to pace with three children, if you manage just a bit of pacing I think that would be a triumph. I learnt pacing the hard way, too. My body would just drop, literally.
This is so true, and something I've been thinking about a lot lately as I have had the privilege of some time to completely convalesce. I can't imagine what my life would be like if I were responsible for children or parents, or if my circumstances were different. And we absolutely need to be lifting each other up, not policing each other. Thanks for this!
I think I would be in a semi-coma were it not for my parents’ care.
I could have written this comment myself, word for word. It’s indeed been a great privilege for me as well. I don’t know how parents or caretakers do it.
For years we supported our daughter like your parents. We even moved country to a better climate for her. All was going very well till covid now we take turns taking care of eachother 😢
Oh no! So you and your daughter are both sick now? That must be a difficult situation 🩷💙
And my husband!
Arg no! That’s a lot. So sorry about this 🩷🌸
BTW love your voice😉
Aw thank you 🩷💙
Fascinating and insightful read as always Madelleine.
Collectively, we have Such a complicated relationship with rest. The messages come thick and fast through school - you’re unable to keep up, you’re lazy.
You’re in bed, you’re lazy. You’re not working, you’re lazy. You’re chronically ill, you’re lazy. Your body is a machine, Rest when you retire.
I can see the confusion with rest being confused with cure. Rest was prescribed in the early medicine days as a cure for women. Forced rest.
And now like you say it’s been politicised.
It’s not too difficult to see why we have such a complicated relationship with it. Have we ever really understood it?
Slowing down was up there with one of the greatest struggles I had. Made possible by privilege. Yet still seen as selfish.
I eventually wrote an article on it that brought up some almighty grief. It went into my highest read and engaged overnight so this one really landed… is that why we Perhaps have such a complicated relationship with rest? Because it forces you to face parts of yourself that have long since been pushed down, ignored?
https://open.substack.com/pub/warriorwithin/p/on-slowing-down
Loving your thoughts here Amber! And YES, it’s been mixed up as a cure for women who were blamed for not being able to handle modern life. I definitely do think that it can be uncomfortable to rest as we are faced with inner demons.
With Elhers-Danlos, the best strategy that works for me is "one day on, one day off." My body has shown me 100% the need for this strategy. It is critical for my real well-being not just the smile I wear. Truth is, as brilliant as it is for me, I can't always manage to actually pull it off!
That sounds like a great strategy! And yes it’s hard to do in real life.
Thank you for your wise words, Madelleine. Rest when I’m forced to it, when body and mind just can’t (like in a bad migraine or drop attack) is easy—and unavoidable— but pacing? Learning to stop before you have to, then learning to stop before you WANT to just to slowly build up a tiny reserve against the next time you can’t stop?
And having a dynamic illness, those lines will be different every day.
Part of the issue is that if a human can get up and do something, they will, yet we continue to call ourselves lazy thanks to internalized ableism. We beat ourselves up about all the tasks we haven’t been able to do… but recently I’ve noticed most people with ‘normal’ amounts of energy keep putting more on their to do list than they can possibly achieve, and then measure their self-worth against that too.
Rest is radical. And resting while anxious or guilty (or bored) isn’t very restful. I’m working on ways to make rest actually restful, while I have the privilege.
I have a carer for 2-3 hrs weekly and a fortnightly cleaner and still I know that I really need a couple more hours of carer. In fact if I had a housekeeper who would cook, clean, shop and do basic maintenance I suspect I would be able to rest properly and eventually work part time work again, maybe. A girl can dream…
I love this! And yes, it’s easy to rest when your body breaks…. but before that… arg! Honestly, it is such a sound investment to give disabled and chronically ill people more care hours, some of us would be able to work a bit or just feel better.
Absolutely. They’ll give buckets of cash to send a cancer kiddie to Disneyland, but won’t fund the chronically ill to the level of dignity. (I think our societies can probably manage both if they stop subsidizing billionaires.)
Ahmen!!
Pacing was also very difficult for me to learn - learning to stop and rest before I’ve pushed it to 100% and need to rest took a long time. I’m lucky to have a husband who supports me with this - I can’t imagine how I’d have got here without the support.
I so hear you!
There are some people in my life who give me the side eye when I rest and others who tell me when they think they spots signs that I need to rest. Some people don't seem to understand bodies behave differently than their own and that is completely okay.
So true!
Never heard of pacing until long covid. Now 4 years in, couldn't do without it! Even on days that I feel pretty good, I pace. I also lie down in the afternoon for an hour at least. Hubby sometimes has to make me, he knows when I'm about to hit the preferable wall. I am blessed to have him that is for sure.
I just love that there are partners out there helping their loved ones to pace — it’s so hard to do on your own 🩷💙
“Pacing is labour, but a kind of labour that is devalued, frowned upon even, because it doesn’t generate economic profit.” Yess! So good, thanks for this piece
Thank you ❤️🩵
Pacing takes awhile to learn for sure. I used to fight it. When I felt pretty good, I'd tackle a to-do list until I drained my energy.
Now I keep track of my energy. When I feel pretty good, I keep a gentle pace and when possible, I take a nap anyway.
Sounds like a great strategy 👌
Sometimes taking a rest can feel luxurious, but sometimes it's hard to do and I have to make myself do it.
Exactly! Except it’s not luxurious, but vital. And booooring!