I wonder if perhaps next swimming session you can sit to the side and just hang out and chill? Then maybe add 15 mins of swimming at a time just to gauge. I think the social aspect of being in a space where everyone is in a comparable situation is definitely very valuable, but I would also not be thrilled about losing an entire week for an hour of swimming. 💛
That's a very good idea! Thank you 🙏 I hadn't even considered doing that. Or even just doing 15 mins. It's silly how I still forget I can do less and break things down further. I think often it's the frustration of having to go so slow and I just want to do it! Thank you so much for your thoughtful comment
Haapppy birthdaaaayyyy Finn woop woop!!!! 🥳Thank you so so much for your amazingly detailed descriptions of the impact of your disability on your life. I have AuDHD, and although obviously very different from ME, your descriptions of post exertional malaise hit the nail on the head. My life is spent calculating energy costs and recovery. I'm currently applying for universal credit and PIP, whilst also juggling my employment tribunal case and trying find a job. Your videos have been invaluable for helping to analyse, verbalise and validate the impact of my own condition. Bravo thank you!!! 👏
Thank you for the birthday wishes and for the lovely comment. Yes, managing all of this is so hard, and leaves us little room for the really important things, self care, relaxation, life! Trying to explain all of this to folks who don't have to calculate their daily energy spend is really hard. I'm sending love and energy for all you are managing. I hope you carve out some quality time for yourself in between! Much love
Same here, AuDHD and recovering from clinical burnout. Calculating your energy & recovery is a big thing. And I've learned lots from Finn about pacing! Not just useful for ME/CFS, but also for other conditions where energy is an issue.
Your home looks so cozy! You describe me/cfs and pem to a T! Never heard of rolling pem but makes sense. I used to go to the pool and walk, it was easy to walk in the warm water but what kills me is taking a shower and getting dressed before and after. Then walking to and from the car. Please give Pim extra cuddle from his fans.
Bless you. Yes, it's exactly all of these additional elements isn't it? I showered the night before, and I didn't shower after the pool ( yes I know! ) And I had Chris's help, but still, it was A LOT wasn't it! It's off the table for this month, I'm going to try it again one more time next month, for even 15 mins, but if the same happens then I'll have to just accept it's above my energy capabilities. Thank you re our home. We love our little home. It's so tiny, which makes it very ME friendly! Much love to you!
I found the beginning a but jarring I'm afraid. It felt like it started halfway through a sentence and my foggy brain was very confused until the normal starting part. The interlude with pip was gorgeous. What a good boy. I've been borderline crash for a week or so, just managing to stave it off. When i crash it feels like being drugged, i can't wait up for days. It sucks all the swear words in the world. Do you have an hrv monitor (you may have talked about it but you know what me/cfs memory is like!). Mine gives me a readiness score out of 10 each morning and i find it helpful to be careful that day if a bad reading. Whenever i think of pem now i think post exertional mayonnaise from the you tube channel. And it makes me laugh. Think we've gotta find anything we can laugh about with this illness! Highly recommend that channel if you haven't seen it before. A cross over with you both would be epic.
This has really helped raise my awareness of what’s been going on for me, and why. Thank you 🙏🏻 for creating this ❤ Sending you love, light and healing ❤
Bless you, it ook me a while to notice this, then when I heard the term it made complete sense. I have a lot of this happening right now and I dont seem to be able to stop t, so just being mindful of it is very helpful, Im glad t was helpful for you too and thanks for watching and for letting me know!
Totally understand this. I find it's the biggest challenge, particularly because simple 'activities' can't be scheduled or planned for; like talking to my children, or unusually heavy traffic on simple drive, or sunshine, or being delayed at medical appointment. If find I need to plan much larger buffer zones than originally. It's all the little things that take energy which contribute to pem. Can I suggest that you do way way way less for a while then just add one thing. Swimming is seriously high energy (even just the thought of changing and getting to pool). Social contact probably more important than exercise so even a zoom chat could be an option. And I found it helpful to look at the not obvious things than drained my energy, like having to phone doctor or speak to relatives that worried about. Found that just lying down regularly (no screens etc) only thing that works to keep in balance. Keep positive though, you've totally got this, and will find what works for you 💕
So glad this was helpful! It's not something I see written/talked about a lot but definitely seems to be a thing and now I know about it l can definitely see it in action in my life. I'm in a rolling PEM phase right now. I can't get enough rest no matter how much I try, so the smallest thing is wiping me out. I'm having to be extra extra careful so knowing about this has been really helpful to not be blind sided!!!
Happy belated birthday you sweet handsome man! 🎊🥳🎉🎁 Hello Pip! Good boy! I love your rainbow bow tie! ☺Give him some extra loves and pets from me! 🐩 I haven't experienced specifically what you describe, but I can say for sure, it sounds maddening to deal with! You describe it well enough that I understand what you're trying to say. I wish they could figure out what's going on with that so they can help anyone with ME/CFS better. I do that with sleep, the deprivation catches up with me and I crash for a few days to a week. I don't do it on purpose, my geriatric cat has a hard time sleeping these days, and my friends schedules plus my schedule just don't work out the way my body needs them all to be. I will send you any extra energy I may have to help you out good buddy!
Hello lovely man! Thanks for the birthday wishes! I had such a great time! I recovered from the crash just in time, though I did get a cold instead, typical 😁🤣. It is so hard managing fatigue and symptoms isn't it? So much with these conditions is still unknown and with ME that's largely due to years of research being badly under funded. Things are moving forward at the moment so I'm hopeful! Birthday vlog is in the making! Much love fella!
@@FinnTheInfinncible My rheumatologist admitted that they don't know what's going on in about 75% of cases since they're so underfunded/not enough research. It's a bummer because so many people would be so much better off knowing how to treat their symptoms instead of being called names or scoffed at by doctors as "attention seekers" or that whole "it's all in your head" business.
So the energy output (loss), build up over time, when you dont rest enough and then crash?? Im sure you use a lot of energy during your anxiety moments too Finn, because I know that mental exersion costs spoons. Maybe do the swimming once a fortnight for 20 minutes??? Take a timer with you when you go out and STICK to it? And you may have to take mental exersion into account too. You will become a master time-keeper. That damn condition is from a horror film. It grates my damn cheddar. I expect a Pip trick day too lol. 🧡❤💛💚💙💜
Yep it is a horror shite show! It's so tricky to manage and absolutely yes, the anxiety of the newness of it will have factored into it too. So yes, with this rolling PEM, it's like when you rest and recover a bit, but not quite enough to get back to your baseline , so that when you do another activity , one that normally wouldn't impact you, you have a disproportionate reaction to it and you crash then, do a delayed delayed crash. It seems to only happen to me when I change my activities and thus my baseline. The answer is definitely short sessions. Swimming is a lot. Getting there, getting changed, getting in, using my body, getting out, getting dressed, getting home. So yes, much shorter sessions is the answer. And that's what I shall do next time. I am just going to even try 15 mins and see what happens after that. This is all a new experiment! And when I do Pips year vlog I'll get him to run through his tricks 😁
@@FinnTheInfinncibleThanks for the explanation Finn. Now you have to use spoons to think about spoon-saving ways!!! I'll be looking forward to the new discoveries you find to save spoons and see Mr Pip do his tricks!!!
In this state I'd say that really deep rest is needed. I'm having to be so careful right now as the smallest thing is tipping me into a crash. I'm still working with this rolling state and learning how to manage it and I think it's a time when our base line needs to be recalibrated, and we need to relook at our activities and what they take from us and what things we can and cannot manage and generally dial everything back for a while and just be extra extra slow.
Stopped for coffee and a cake!!! Could be the trigger, surely would send me into crash . Sugar and gluten gets me every time. Something else to examine, perhaps the swimming is fine, the snack bit your butt
I woke up, which is very difficult now. I have to get up and take my Service Dog Finn out and SLOWLY wake up. My Dearest Friend I get completely where you are at. I used to swim. I love water. What if you only do things you love. I know we must do things that are not loveable, like reading mail, Advocating for things you NEED, phone calls etc. Mail for me is so difficult. I TRULY am so bummed out to hear that you are in the extremely dreadful part of this most Horrible Dusease. As I opened my eyes today, one of the first things I thought about goes as follows, I need to and hope Finn uploaded. OH BOY, HE DID!! Pip is your beastie indeed ❤🐾🔥🫂❤️🩹
You are such a sweetheart . Yes that's this year's plan, only doing things I love, as little stress and pressure as I can. Swimming was hopefully something I could love, well not swimming but floating, but even that might just be too much! Arg it's such a balancing act isn't it! But, there is still much to be celebrated with these life changes I've made this year. Less pressures, more time for resting and relaxing meant that I had time to recover and really enjoy my birthday. There will be a vlog about that coming soon! Much love you you and your Finn! Xxx
I wonder if perhaps next swimming session you can sit to the side and just hang out and chill? Then maybe add 15 mins of swimming at a time just to gauge. I think the social aspect of being in a space where everyone is in a comparable situation is definitely very valuable, but I would also not be thrilled about losing an entire week for an hour of swimming. 💛
That's a very good idea! Thank you 🙏 I hadn't even considered doing that. Or even just doing 15 mins. It's silly how I still forget I can do less and break things down further. I think often it's the frustration of having to go so slow and I just want to do it! Thank you so much for your thoughtful comment
Haapppy birthdaaaayyyy Finn woop woop!!!! 🥳Thank you so so much for your amazingly detailed descriptions of the impact of your disability on your life. I have AuDHD, and although obviously very different from ME, your descriptions of post exertional malaise hit the nail on the head. My life is spent calculating energy costs and recovery. I'm currently applying for universal credit and PIP, whilst also juggling my employment tribunal case and trying find a job. Your videos have been invaluable for helping to analyse, verbalise and validate the impact of my own condition.
Bravo thank you!!! 👏
Thank you for the birthday wishes and for the lovely comment. Yes, managing all of this is so hard, and leaves us little room for the really important things, self care, relaxation, life! Trying to explain all of this to folks who don't have to calculate their daily energy spend is really hard. I'm sending love and energy for all you are managing. I hope you carve out some quality time for yourself in between! Much love
Same here, AuDHD and recovering from clinical burnout. Calculating your energy & recovery is a big thing. And I've learned lots from Finn about pacing! Not just useful for ME/CFS, but also for other conditions where energy is an issue.
Your home looks so cozy! You describe me/cfs and pem to a T! Never heard of rolling pem but makes sense. I used to go to the pool and walk, it was easy to walk in the warm water but what kills me is taking a shower and getting dressed before and after. Then walking to and from the car. Please give Pim extra cuddle from his fans.
Bless you. Yes, it's exactly all of these additional elements isn't it? I showered the night before, and I didn't shower after the pool ( yes I know! ) And I had Chris's help, but still, it was A LOT wasn't it!
It's off the table for this month, I'm going to try it again one more time next month, for even 15 mins, but if the same happens then I'll have to just accept it's above my energy capabilities.
Thank you re our home. We love our little home. It's so tiny, which makes it very ME friendly!
Much love to you!
I found the beginning a but jarring I'm afraid. It felt like it started halfway through a sentence and my foggy brain was very confused until the normal starting part.
The interlude with pip was gorgeous. What a good boy.
I've been borderline crash for a week or so, just managing to stave it off. When i crash it feels like being drugged, i can't wait up for days. It sucks all the swear words in the world.
Do you have an hrv monitor (you may have talked about it but you know what me/cfs memory is like!). Mine gives me a readiness score out of 10 each morning and i find it helpful to be careful that day if a bad reading.
Whenever i think of pem now i think post exertional mayonnaise from the you tube channel. And it makes me laugh. Think we've gotta find anything we can laugh about with this illness! Highly recommend that channel if you haven't seen it before.
A cross over with you both would be epic.
Pip is such a good boy. You’ll figure this PEM out. I hope you have a great week.
Thanks so much my friend
Ah, the Pip cuddles at the end 🥰 💜xx
I know. He's such a softie
That precious Pip is truly a gift while you navigate this debilitating condition. Sending healing and loving vibes. ❤
He really is. Every day is a wonderful day with him in it! Much love to you!
This has really helped raise my awareness of what’s been going on for me, and why. Thank you 🙏🏻 for creating this ❤
Sending you love, light and healing ❤
Bless you, it ook me a while to notice this, then when I heard the term it made complete sense. I have a lot of this happening right now and I dont seem to be able to stop t, so just being mindful of it is very helpful, Im glad t was helpful for you too and thanks for watching and for letting me know!
Totally understand this. I find it's the biggest challenge, particularly because simple 'activities' can't be scheduled or planned for; like talking to my children, or unusually heavy traffic on simple drive, or sunshine, or being delayed at medical appointment. If find I need to plan much larger buffer zones than originally. It's all the little things that take energy which contribute to pem. Can I suggest that you do way way way less for a while then just add one thing. Swimming is seriously high energy (even just the thought of changing and getting to pool). Social contact probably more important than exercise so even a zoom chat could be an option. And I found it helpful to look at the not obvious things than drained my energy, like having to phone doctor or speak to relatives that worried about. Found that just lying down regularly (no screens etc) only thing that works to keep in balance. Keep positive though, you've totally got this, and will find what works for you 💕
Pip is the goodest boy and his bow tie suits him very well. I hope you have a lovely birthday xxx
Thank you! There will be a vlog about it asap! And um blessed with Pip, he's out little star!
I just want to tell you that I love you sweet man 💓
Love you too you gorgeous human
Damn I never knew this was a thing and I've had CFS for 12 years 😅 Very helpful, thank you! ❤
So glad this was helpful! It's not something I see written/talked about a lot but definitely seems to be a thing and now I know about it l can definitely see it in action in my life. I'm in a rolling PEM phase right now. I can't get enough rest no matter how much I try, so the smallest thing is wiping me out. I'm having to be extra extra careful so knowing about this has been really helpful to not be blind sided!!!
Happy belated birthday you sweet handsome man! 🎊🥳🎉🎁
Hello Pip! Good boy! I love your rainbow bow tie! ☺Give him some extra loves and pets from me! 🐩
I haven't experienced specifically what you describe, but I can say for sure, it sounds maddening to deal with! You describe it well enough that I understand what you're trying to say. I wish they could figure out what's going on with that so they can help anyone with ME/CFS better.
I do that with sleep, the deprivation catches up with me and I crash for a few days to a week. I don't do it on purpose, my geriatric cat has a hard time sleeping these days, and my friends schedules plus my schedule just don't work out the way my body needs them all to be.
I will send you any extra energy I may have to help you out good buddy!
Hello lovely man! Thanks for the birthday wishes! I had such a great time! I recovered from the crash just in time, though I did get a cold instead, typical 😁🤣.
It is so hard managing fatigue and symptoms isn't it? So much with these conditions is still unknown and with ME that's largely due to years of research being badly under funded. Things are moving forward at the moment so I'm hopeful!
Birthday vlog is in the making!
Much love fella!
@@FinnTheInfinncible My rheumatologist admitted that they don't know what's going on in about 75% of cases since they're so underfunded/not enough research. It's a bummer because so many people would be so much better off knowing how to treat their symptoms instead of being called names or scoffed at by doctors as "attention seekers" or that whole "it's all in your head" business.
Ooohhhh I hope you have a spectacular birthday Finn!!
Thank you, it was wonderful! I can't wait to tell you all about it!
So the energy output (loss), build up over time, when you dont rest enough and then crash??
Im sure you use a lot of energy during your anxiety moments too Finn, because I know that mental exersion costs spoons.
Maybe do the swimming once a fortnight for 20 minutes??? Take a timer with you when you go out and STICK to it? And you may have to take mental exersion into account too. You will become a master time-keeper.
That damn condition is from a horror film. It grates my damn cheddar.
I expect a Pip trick day too lol. 🧡❤💛💚💙💜
Yep it is a horror shite show! It's so tricky to manage and absolutely yes, the anxiety of the newness of it will have factored into it too.
So yes, with this rolling PEM, it's like when you rest and recover a bit, but not quite enough to get back to your baseline , so that when you do another activity , one that normally wouldn't impact you, you have a disproportionate reaction to it and you crash then, do a delayed delayed crash. It seems to only happen to me when I change my activities and thus my baseline.
The answer is definitely short sessions. Swimming is a lot. Getting there, getting changed, getting in, using my body, getting out, getting dressed, getting home. So yes, much shorter sessions is the answer. And that's what I shall do next time. I am just going to even try 15 mins and see what happens after that.
This is all a new experiment!
And when I do Pips year vlog I'll get him to run through his tricks 😁
@@FinnTheInfinncibleThanks for the explanation Finn. Now you have to use spoons to think about spoon-saving ways!!! I'll be looking forward to the new discoveries you find to save spoons and see Mr Pip do his tricks!!!
How does one know how much rest is enough to balance Rolling?
In this state I'd say that really deep rest is needed. I'm having to be so careful right now as the smallest thing is tipping me into a crash. I'm still working with this rolling state and learning how to manage it and I think it's a time when our base line needs to be recalibrated, and we need to relook at our activities and what they take from us and what things we can and cannot manage and generally dial everything back for a while and just be extra extra slow.
Despite everything you look great
I appreciate that. Thanks my friend!
He is a handsome lad 😉
Look into the work of Dr John Sarno, his insights on the body have been mind blowing for me. Its another tool in your kit.
im wondering/do trans men go through menopause?some of your symptoms sound peri./menopausal
We kind of do as testosterone wipes out the eastrogen but this isn't menopause , I have ME, hypothyroidism, and PoTS
Stopped for coffee and a cake!!! Could be the trigger, surely would send me into crash . Sugar and gluten gets me every time. Something else to examine, perhaps the swimming is fine, the snack bit your butt
Sugar doesn't send me into a full on crash. It can make me extra fatigued, but not full on PEM crashed. Definitely the swimming!
Do you think the covid vaccine or covd might have caused your condition?
No my ME started long before Covid started
I woke up, which is very difficult now. I have to get up and take my Service Dog Finn out and SLOWLY wake up. My Dearest
Friend I get completely where you are at. I used to swim. I love water. What if you only do things you love.
I know we must do things that are not loveable, like reading mail, Advocating for things you NEED, phone calls etc. Mail for me is so difficult. I TRULY am so bummed out to hear that you are in the extremely dreadful part of this most Horrible Dusease. As I opened my eyes today, one of the first things I thought about goes as follows, I need to and hope Finn uploaded.
OH BOY, HE DID!! Pip is your beastie indeed
❤🐾🔥🫂❤️🩹
You are such a sweetheart . Yes that's this year's plan, only doing things I love, as little stress and pressure as I can. Swimming was hopefully something I could love, well not swimming but floating, but even that might just be too much!
Arg it's such a balancing act isn't it! But, there is still much to be celebrated with these life changes I've made this year. Less pressures, more time for resting and relaxing meant that I had time to recover and really enjoy my birthday. There will be a vlog about that coming soon! Much love you you and your Finn! Xxx
Im so sorry ME is so bad for you. Im glad you found some joy in this clip. 💙💜