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The most important thing when you have ME/CFS: Pacing 

Me and my ME CFS
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If you have ME/CFS or long covid and you suffer from post exertional malaise, you should learn how to pace. It’s not a cure but it’s a way to lessen your symptoms and possibly gain a bit more energy.
More advice on pacing here: www.actionform...
How to use heart rate monitor with pacing: www.cfsselfhelp...

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1 окт 2024

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Комментарии : 15   
@user-cb8sg9py7r
@user-cb8sg9py7r 2 года назад
Im a mom of four little children and I dont really even need to go anywhere to get PEM.... Thats why its hard to get out of the push crash cycle. I do have some help but It seems like I would need to sleep and rest in quiet for months until I started recovering .. but I need to be with my family and children.
@meandmymecfs3565
@meandmymecfs3565 2 года назад
So sorry to hear. I fully understand it’s difficult to get enough rest when you have small children. You can only try and do your best. I got some help from social office because I have children - even when they are so old they don’t need help, I needed it. But that was only for 3 months.
@Louise-gg4mf
@Louise-gg4mf 4 месяца назад
That was so very helpful. The best explanation ever. Thank you!
@meandmymecfs3565
@meandmymecfs3565 4 месяца назад
Thank you so much, I am glad it was helpful!
@gaoshikui88
@gaoshikui88 2 года назад
Thanks for sharing. It sounds like you have been in a gradual decline from previously walking to now only walk a very short distance. Do you feel like pacing has stopped the progression of the illness in other ways?
@meandmymecfs3565
@meandmymecfs3565 2 года назад
Hi, I think so. I have ups and downs but I seem to bounce back to my basic level.
@gaoshikui88
@gaoshikui88 2 года назад
@@meandmymecfs3565 you know alot of people and some doctors believe mecfs can be recovered from in a meaningful way if we can sort out the important things like pacing, sleep, anxiety and diet. I am quite ill now from pushing myself for two years but I have finally let go and give my body the crash it needs. No more adrenaline. I think if we follow some good guidelines we can recover. But we must make painful and sometimes cruel sacrifices and 100% prioritise our recovery. It is possible
@meandmymecfs3565
@meandmymecfs3565 2 года назад
@@gaoshikui88 I do all those, I have never been very anxious or depressed, still aren’t. They are good ways of managing symptoms, especially pacing. Buy I do think I would be worse without taking care of those things.
@user-cb8sg9py7r
@user-cb8sg9py7r 2 года назад
What kind of food causes you PEM?
@meandmymecfs3565
@meandmymecfs3565 2 года назад
For me: gluten, high carb food (even rice or a banana) and dairy. I’m not that sensitive anymore, but I have developed allergies (dairy and wheat).
@shawnaford5540
@shawnaford5540 Год назад
Thanks I have just discovered using an HR tool and it is surprising how little get my HR past the limit. It will be a good tool to the now to mange my energy.
@XXO-Rosie
@XXO-Rosie Год назад
How old were your children when you became ill?
@meandmymecfs3565
@meandmymecfs3565 Год назад
Hi Rosie, my children were 10 and 12, luckily, if they would have been smaller everyting would have been more difficult.
@XXO-Rosie
@XXO-Rosie Год назад
@@meandmymecfs3565 I have a two year-old. It is very difficult.
@meandmymecfs3565
@meandmymecfs3565 Год назад
@@XXO-Rosie I can understand that!
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