I love love love your channel and there’s such a productive sense of getting well but equally sharing the struggles and YES I’ve literally had a relapse myself and it was cognitive drain that got me there
Ah thanks so much Khatija - glad you're enjoying the channel. It's so hard to measure cognitive exertion - it's more of an art than a science and get it wrong more often then not. Hope your relapse passes soon 💛
The work ethic is drilled into many of us, from an early age, and with ME, FMS and Acute Long Covid the opposite is required. Less is more. The brain uses up huge amounts of energy, as does digesting the wrong type of foods. If on Nicotonic Acid you can get a flush after using up brain power as much as physical energy. The banking and going overdrawn analogy is one that I've tried to use over the years but it's challenging. Listening to ones body is hard. I need to listen to calming apps more - hard for an adult having to run a house/home etc. I was taught that there are four types of basic fatigue; mental, emotional, physical and 'spiritual' (which can mean different things to different people).
Thanks for sharing! Honestly this work ethic and pushing through ability that I’ve had from a young age has been my undoing with long covid. It’s very hard to unlearn. I like the overdrawn analogy as well as thinking of myself like a phone battery. Some days we wake up at 30% and we have to spend all day trying not to get to 0. Definitely I imagine it must add several layers of challenge getting quiet time with kids around. I really like the curable app (especially if you have chronic pain as one of your symptoms) and insight timer. I hope you’re having a good day 💛
@@naimaella Thanks. Hope you're having a good day too😊👍 A strong work ethic is a double edged sword - everything in balance is best (I learned that too late - after throwing myself into work after certain traumatic experiences). In addition, any relationship can affect people who's energy has to be managed, with mitochondria type damage (permanent or impermanent), one has to be very careful to not be dragged into toxic relationships or situations. Having Acute long Covid, ME, FMS, teaches one a lot about the world and people. I'm not a religious person, per se, spiritual though, I read a few months back that the Biblical Job, appeared to have FMS type symptoms, I went and re-read Job and such seems so. Florence Nightingale had FMS symptoms after being exposed to stress, trauma, the flu type illnesses affecting the soldiers she treated. My own research, which I've conducted on and off since 2000, along with certain scientists post 2020, indicates that most people are vitamin B deficient - despite NHS testing - due to the "empty tank scenario", especially B12 and B3 in its Nicotinic Acid form (for Long Covid in particular). Being deplete in B vitamins will knock ones energy for six😕😕😕 Thanks for the tip, re the App too👍✌️😊 I've downloaded it. Did you pay for the extra services may I ask, please?🤔🤔
Yes Naima, it takes a long time to learn how to pace. Normally, if you have something wrong you get to a point of feeling better and immediately continue as if recovered. With this you can't, I've had two prolonged crashes due to overdoing after a good period, hopefully I have now learnt. Upwards and onwards, as they say....Good luck.
I'm in completely the same boat. Felt amazing March - June and thought I was coming out the other side. The good periods can trip you up more than the bad. Best of luck to you too!
‘Learn to rest, not to quit’ Banksy. I’m learning to rest, Post Covid Clinic insistent this is lying down eyes closed with no stimulation four times a day for me. Look forward to hearing from your guest. My question is what’s the most effect way to learn when to stop being too active when things are going well? It’s kinda hard to just stop when I’m feeling good, then I find I’ve overdone it.
Love that quote! Four times a day... interesting I've been told to do the same, but so far have only been doing it twice. We almost have to reframe what resting means with long COVID. And great question I'll add that to the list 😊
@@naimaella haha- yup, I’ve only managed three rests a couple of times, two is just about manageable. I only had six appointments with the post covid clinic, the clinician said that was all the funding they had. Did you get some guidance on box breathing, the long slow diaphragm in and out six reps in a minute? Sounds like something to calm the autonomic nervous system down. Also have you checked out Gez Mendinger’s UA-cam on Long Covid, it’s worth a look.
@@ianseaweed I think three is just about doable on a very quiet day. I'm due a call soon, but have not had many appointments at all either. I love box breathing, but found that myself while doing research - not from the post-covid clinic. I've just found this www.stasis.life which is well worth checking out even if you only do the on-boarding videos. I've found so many breathing exercises that (I think) have really helped recently. And yes I love Gez's channel - he's doing some great work and love his videos!
Thanks for another great video! I find timing an important part of pacing. Some chores will take less spoons or energy dollars at 10am than 7am or 3pm, so this can be super in making limited energy budget go farther. I also find time of year has an impact on energy reserves, so limit expectations in deep winter and high summer. I'd love to hear further thoughts about this with your upcoming guest! Solidarity and best wishes to you!!!
I like the banking analogy. So far I've gone with the battery but I suppose with that you can never get into the negative and it's harder to think at what percentage I am than feeling like oh today cost me so much energy and now I need to regain balance and need X amount to continue again. Just a bit of a switch in thinking.
Yes I like the battery analogy too, but there have been many times where I’ve felt overdrawn and the battery analogy doesn’t quite cover it! Hope you’re having a good day 😊
I’ve spoken to so many doctors and all have said I will make a full recovery. They just don’t know when. I’ve improved a lot since getting my initial treatment.
@@dongee1664 hi yes .I'm sorry..I've been dealing with long covid for almost a year and I'm frustrated and depressed..and don't see people recovering..so when I see these recovery videos it's like false hope
I love love love your channel and there’s such a productive sense of getting well but equally sharing the struggles and YES I’ve literally had a relapse myself and it was cognitive drain that got me there
Ah thanks so much Khatija - glad you're enjoying the channel. It's so hard to measure cognitive exertion - it's more of an art than a science and get it wrong more often then not. Hope your relapse passes soon 💛
The work ethic is drilled into many of us, from an early age, and with ME, FMS and Acute Long Covid the opposite is required. Less is more.
The brain uses up huge amounts of energy, as does digesting the wrong type of foods. If on Nicotonic Acid you can get a flush after using up brain power as much as physical energy.
The banking and going overdrawn analogy is one that I've tried to use over the years but it's challenging.
Listening to ones body is hard. I need to listen to calming apps more - hard for an adult having to run a house/home etc.
I was taught that there are four types of basic fatigue; mental, emotional, physical and 'spiritual' (which can mean different things to different people).
Thanks for sharing! Honestly this work ethic and pushing through ability that I’ve had from a young age has been my undoing with long covid. It’s very hard to unlearn.
I like the overdrawn analogy as well as thinking of myself like a phone battery. Some days we wake up at 30% and we have to spend all day trying not to get to 0.
Definitely I imagine it must add several layers of challenge getting quiet time with kids around. I really like the curable app (especially if you have chronic pain as one of your symptoms) and insight timer.
I hope you’re having a good day 💛
@@naimaella Thanks. Hope you're having a good day too😊👍 A strong work ethic is a double edged sword - everything in balance is best (I learned that too late - after throwing myself into work after certain traumatic experiences). In addition, any relationship can affect people who's energy has to be managed, with mitochondria type damage (permanent or impermanent), one has to be very careful to not be dragged into toxic relationships or situations. Having Acute long Covid, ME, FMS, teaches one a lot about the world and people. I'm not a religious person, per se, spiritual though, I read a few months back that the Biblical Job, appeared to have FMS type symptoms, I went and re-read Job and such seems so. Florence Nightingale had FMS symptoms after being exposed to stress, trauma, the flu type illnesses affecting the soldiers she treated. My own research, which I've conducted on and off since 2000, along with certain scientists post 2020, indicates that most people are vitamin B deficient - despite NHS testing - due to the "empty tank scenario", especially B12 and B3 in its Nicotinic Acid form (for Long Covid in particular). Being deplete in B vitamins will knock ones energy for six😕😕😕
Thanks for the tip, re the App too👍✌️😊 I've downloaded it. Did you pay for the extra services may I ask, please?🤔🤔
Thank you for the video.
Yes Naima, it takes a long time to learn how to pace. Normally, if you have something wrong you get to a point of feeling better and immediately continue as if recovered. With this you can't, I've had two prolonged crashes due to overdoing after a good period, hopefully I have now learnt. Upwards and onwards, as they say....Good luck.
I'm in completely the same boat. Felt amazing March - June and thought I was coming out the other side. The good periods can trip you up more than the bad. Best of luck to you too!
‘Learn to rest, not to quit’ Banksy. I’m learning to rest, Post Covid Clinic insistent this is lying down eyes closed with no stimulation four times a day for me. Look forward to hearing from your guest. My question is what’s the most effect way to learn when to stop being too active when things are going well? It’s kinda hard to just stop when I’m feeling good, then I find I’ve overdone it.
Love that quote! Four times a day... interesting I've been told to do the same, but so far have only been doing it twice. We almost have to reframe what resting means with long COVID. And great question I'll add that to the list 😊
@@naimaella haha- yup, I’ve only managed three rests a couple of times, two is just about manageable. I only had six appointments with the post covid clinic, the clinician said that was all the funding they had. Did you get some guidance on box breathing, the long slow diaphragm in and out six reps in a minute? Sounds like something to calm the autonomic nervous system down. Also have you checked out Gez Mendinger’s UA-cam on Long Covid, it’s worth a look.
@@ianseaweed I think three is just about doable on a very quiet day. I'm due a call soon, but have not had many appointments at all either.
I love box breathing, but found that myself while doing research - not from the post-covid clinic. I've just found this www.stasis.life which is well worth checking out even if you only do the on-boarding videos. I've found so many breathing exercises that (I think) have really helped recently.
And yes I love Gez's channel - he's doing some great work and love his videos!
Thanks for another great video!
I find timing an important part of pacing. Some chores will take less spoons or energy dollars at 10am than 7am or 3pm, so this can be super in making limited energy budget go farther. I also find time of year has an impact on energy reserves, so limit expectations in deep winter and high summer. I'd love to hear further thoughts about this with your upcoming guest!
Solidarity and best wishes to you!!!
Thanks! Yes that’s a great point - I’ll be sure to mention that with my guest. Have a great weekend 😊
I like the banking analogy. So far I've gone with the battery but I suppose with that you can never get into the negative and it's harder to think at what percentage I am than feeling like oh today cost me so much energy and now I need to regain balance and need X amount to continue again. Just a bit of a switch in thinking.
Yes I like the battery analogy too, but there have been many times where I’ve felt overdrawn and the battery analogy doesn’t quite cover it! Hope you’re having a good day 😊
Hi why do you call it recovery..it's seems like it's more of a permanent thing you have to live wirh
I’ve spoken to so many doctors and all have said I will make a full recovery. They just don’t know when. I’ve improved a lot since getting my initial treatment.
I also believe u will recover more Naima. This isn't permanent, u are improving as time continues
@@beatrizherrera5429 ah thanks so much Beatriz! Obviously some days it's harder than others, but I believe that too 💛.
A negative and thoughtless comment Stanley, I hope that you realise why.
@@dongee1664 hi yes .I'm sorry..I've been dealing with long covid for almost a year and I'm frustrated and depressed..and don't see people recovering..so when I see these recovery videos it's like false hope