PACING for Chronic Fatigue/Myalgic Encephalomyelitis. How I manage my energy. ME/CFS Spoonie

7 April 2025


PACING for Chronic Fatigue/Myalgic Encephalomyelitis. How I manage my energy. ME/CFS Spoonie



Top tips for pacing with a fatigue condition like ME/CFS + managing my energy as a spoonie. Pacing can be difficult, but it is really important to learn for chronic fatigue management and recovery.

Are there any important tips I’ve missed? (let me know in the comments)

My name is Elinor, I am a 22-year-old sociology student who has been living with ME/CFS for 6 years. I started making YouTube Videos consistently about my experience with chronic illness and mental health struggles in June 2020!

This video does not necessarily reflect everyone's experiences with ME/CFS because we are all different and have different experiences. This is because ME/CFS can be different than I have experienced, and each person’s situation will be different and therefore each person’s story will be different!

Watch Next:

My Chronic Illness story PLAYLIST: https://www.youtube.com/playlist?list=PLkNx1WfkKxKfWeN5EPXbadew_gYkK_3Xu

Walking Stick REPRESENTATION: https://youtu.be/LNXl-bh88sM

RECOVERING from CHRONIC FATIGUE SYNDROME: https://youtu.be/mSigVJkhOYU

I Bought a FASHIONABLE WALKING STICK?!: https://youtu.be/ooOvvXmD8qs

2020 Goals Recap and 2021 Goals with ME/CFS: https://youtu.be/MFNllF1Qe54

Top 5 Tips for living with ME/CFS: https://youtu.be/iZKyzQ5XiNQ

Moving House with a Chronic Illness PLAYLIST: https://www.youtube.com/playlist?list=PLkNx1WfkKxKeYkfsnfxWw4ZIdD-5Jutm8

CFS/ME day in my life at university: https://youtu.be/mrINbgXbV8M

University week in my life: https://youtu.be/W_s_nVi7oFg

ME/CFS evening routine 2020: https://youtu.be/53SPC2lEEb4

Weird CFS symptoms: https://youtu.be/lXpQNI0X12g

CFS/ME Day In My Life: https://youtu.be/AJcJOU7pNFg

UNIVERSITY advice for CHRONIC ILLNES: https://youtu.be/E9FmnsIPkfA

Follow me on Instagram https://www.instagram.com/ellellell_brown/

Follow me on TikTok https://www.tiktok.com/@elinorbrown3

Thank you so much for watching!! Make sure to like, comment, and subscribe to see more videos from me every other SUNDAY…. Ish!

#chronicfatiguesyndrome

#Myalgicencephalomeylitis

#ME/CFS

#Babewithamobilityaid

hi everyone there's lots of things that people tell you to do when you've got an ecfs or other conditions that have limited energy or you're a spoony but one of the main things you hear most is pacing and what people mean by that is limit the amount of energy you use to stop yourself crashing so quite often when you first develop a fatigue condition or a condition where you have limited energy is that you don't know how to handle it so you boom and burst whatever you want to call it so you do a lot and you've way overdone it so you feel really awful and then you start feeling better so you do stuff again and you just keep doing this cycle and basically the aim is that you want to be able to get to a baseline so you don't cause yourself the big troughs because you've done the big spikes you want to try and get yourself on like a level where if you continue doing this amount of energy you feel okay okay is different for everyone and they quite often say where you get onto a level so you don't have symptoms but i think that's probably a little bit too ambitious at where i'm at on my level does have some symptoms but it has significantly less symptoms than when i'm at a low patch and the way i do that is to not way overdo it so i'm going to talk about my tips on how you can use pacing to get yourself on that level and feel better which is the main advantage of pacing in my opinion and it's not to say that if you pace you won't get any of those lows because there are circumstances that are unavoidable where you will have to overdo it you might get a cold if you've got an exam things like special occasions cause a crash but regularly the aim should be to try and stay at your baseline so one of the main things about pacing is you need to be realistic you need to be realistic in what your baseline could include that will not cause you to crash when you first start out with a fatigue condition you don't know what's realistic to you but over time you'll you'll know what's realistic for your situation and you may have a more mild case where you can continue to work or maybe you have a severe case and you can't get out of bed and your baseline is going to depend on how well you are but you need to know yourself and you need to be realistic about what is your baseline so my baseline at the moment is about four hours maybe five of active energy a day so i'm at university so i generally do two or three hours of university and then i do maybe another hour or two of something else maybe depends how i feel so that's my baseline but everyone's different so your bass light might be significantly higher than mine your bassline may also not be as high as mine so if you are mostly bedridden or completely bedridden your baseline may be getting out of bed once a day or you know it's it's all depends on you but you need to be realistic if you set too many goals you're either going to be disappointed that you can't do them or you're going to push too hard do them anyway and then you're going to continue the peaks and trough cycle which is what you're really trying to break so my second point is kind of related you have to be okay with not achieving everything you'd like to achieve so quite often i have a list of things i'd quite like to do i will prioritize them number one and two on my list are things that i know i can do today and then i have some extra things that if i feel good i might do some more and if i don't i won't do them and that's really important because you need to not beat yourself up if you can't do what you set out to do sometimes i can't even do the things higher up my priority list because it's an unexpectedly bad day and you have to forgive yourself for that you definitely get a sense of guilt a feeling you've failed and you need to try to let those feelings go the feelings of guilt are completely unhelpful you should not feel guilty if your chronic illness has prevented you from doing something you wanted to get done to-do lists are great i like a to-do list and i love to take things off but i don't beat myself up when i can't do the things i did write down you have to be kind to yourself so the next thing i wanted to talk about for pacing is to not try to do the same things every day you need to be working within your abilities but every day your ability will not be the same some days you'll feel really awful and those fluctuations can sometimes be the result of things you've done or they can just be a result of things you have no control over trying to do the same thing every day was initially what i was told by doctors after i was diagnosed they told me that i should be doing the same amount of activity every day and though this isn't completely wrong because obviously you've got your baseline and your baseline should be something you can do most days but the problem with saying you should do it every day is that then you make this expectation for yourself and you push yourself too far i was told that that was the right thing to do and that way it would make me better and so i went on these tiny little walks every day it was hellish i would have bad days and i would go anyway i would be crying i would just be just i so don't want to do this but i was told that this is what i had to do if i could give you one recommendation is do not push your body this hard it will not help you you should be trying to do some form of exercise which can be walking or can be just getting dressed or whatever it is just to you know get your heart rate up it's it's good for your cardiovascular system but you shouldn't do those things on bad days those things that push you should be avoided on bad days absolutely under no circumstances should you do anything difficult on a bad day obviously everything's difficult the things that you do that push you further to get more physically fair or physically active should be avoided on a bad day you need to be kind to yourself again i said that again and you need to allow yourself to have bad days everyone has bad days even like physically healthy normal people have bad days where they can't do everything that they usually would take a bad day if you have a bad day just lay in bed or whatever your bad day means for you but don't try and keep pushing because that is just gonna really really not help another tip i have is don't forget that mental activities also use up your spoons you always know that going for a walk or having a shower or you know doing the stairs they're obviously all energy using you need to limit them but i think quite often we forget that reading a book or watching a really tense television program or obviously doing university work there's things that are obviously work like university but watching a tense tv program or reading a book concentrating on like a specific craft can all actually be high energy as well depending where you are and you need to remember that those things also count in your however many hours of usable energy you've got you know if you've you feel really tired and then you think yes i shall go and read a book that only works if you've got enough brain capacity so if you're physically tired obviously that's fine but if you're also mentally tired you can't do that and those things aren't completely separate they do work together and if you've used up your usable hours already you probably should stay away from any mental tasks like difficult conversations etc and don't forget that those things are energy sapping too which sometimes feels like they shouldn't be but we're just out here in the land of energy disappearing at every possible opportunity and it will go if you read a book or whatever else so just remember that those things do need to be considered when you're pacing and when you're keeping track of the energy you've used and the last thing which i know i've said before in other videos but listen to your body that's the main thing and i think it's the main thing with really getting to a good place with your cfs and it's something that no one else can do for you and you really just need to spend time learning about it you won't be able to do it straight away when you are newly experiencing it you just have to take time to understand the signals in your body and what they mean when i got sick all of the signals in my body changed before when i was fit and healthy being you know tired or a bit achy weren't bad things i could work through them and that was okay that's not what it means anymore and i think you've got to learn this whole new mindset i really have to learn what your body feels like and how best to approach improving or just maintaining or managing your illness all about learning what your body is trying to tell you and listening to it it's not a quick fix you've got to take the time to learn it i'm afraid it's not always what you want to hear is it but thank you for watching this video if you have any other tips for people on how to do pacing please leave them in the comments and like the video if you enjoyed it um also please subscribe i am hoping to hit a thousand subscribers this year but i think i might have over my prediction so if you could help me that would be great thank you for watching bye bye oh no try and get yourself on like a level playing field now you

#PACING #Chronic #FatigueMyalgic #Encephalomyelitis #manage #energy #MECFS #Spoonie

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33 Comments
  1. Thanks for this. Great to hear from a real sufferer. So useful.

    Too many “experts” (medical professionals) on YouTube these days drowning out real people’s voices.

    ❤❤❤

  2. Thank you for sharing, you hit the nail on the head!! This is awesome. Learning to not feel guilty is a hard one. Learning to pace one self is not easy. But these are both important to know.

  3. Thanks so much for making this video! Have you found with pacing you can eventually expand your capacity (do longer or more intense bouts of exercise, engage in daily activities for more hours than before)? If so, how do you know when it’s time to increase your daily load without crashing?

  4. Thank you so much. This advice is really useful.

  5. im autistic and have been experiencing chronic fatigue for a few years. It felt like it was ruining my life, but watching videos like this helps me to find acceptance.

  6. Such good advice that mental activities take every too. I found that out only recently

  7. Very wise words indeed! It's very hard to accept, but the very best thing for you.

  8. Thank you so much. I'm recently diagnosed with this, I'm in a crash rn. I need to figure out how to pace with 2 small children

  9. Have you considered stachybotrys mold being the cause?

  10. Needed these reminders thank you. I've tried to read 2 books all year and only got to chapter 2 of both. My energy is used up trying to work and keep a job so I have to spend left for anything else

  11. Thank you for sharing your story. Love the out takes😊

  12. Omg thank you thank you thank you for not promising recovery. And for emphasizing how everyone has different baselines and “ok”. And that expecting no symptoms might be too ambitious.

    It’s truly gaslighting and harmful to emphasize how important it is to prioritize “recovery” and having the “right” system to “recover.” Without calling out the reality that not everyone can recover.

    Thank you!🎉🎉🎉

  13. Thank you for this video and your advice. Really helpful. I have chronic pain and fatigue. I now see I am pushing myself too much and feel guilty when I can't do things.

  14. I have energy issues due to hormonal imbalances. I am still feeling guilty because of the things I don't get done. Its unhelpful when I can't keep my house clean because I get too tired to do things like mop the floor and then my mum comes round and tells me that I am going to get another infection because my home isn't clean enough (I keep getting sepsis)

  15. This is a great video. You have summed up the things that are said over and over. The hard part is what does that look like in life. That is my challenge. My to do list tends to be my focus and I forget to do one and then assess where I am at. Thanks for this.
    PS Bloopers are the best. It shows you are geniune and just like the rest of us.

  16. Every explanation I find on pacing leaves me with further questions. For example, my pain and energy levels are at a point where I can perform one small task, then require a significant amount of rest before I can perform another. How does this fit in with pacing?

  17. thank you for this you dont know how much youre helping

  18. great advice thank you. I'm 53yo with fibromyalgia and you help me so much💜

  19. This is absolutely fabulous! Very smart post! I am a new subscriber, new to your channel. What a wonderful find, you are! I have stage 4 cancer, and even though we don't have the same ailments, we handle things very similarly! Thanks for being you!

  20. this was exactly what i needed. thank you 💖

  21. Don't have chronic fatigue but experience it daily along with my joint pain so this was super helpful since I'm an over-achiever who pushes themselves probably more than I should. (Just realized that this was a year old, whoops)

  22. This is year 8 for me with mecfs and I can pace better with a heart rate monitor. I otherwise tend to push push push.

  23. One of my doctors made me go on walks too, and I cried doing them sometimes too. At the time I thought I was just oversensitive, but now I know it was for good reason! I should have been listening to my body like you said. It's crazy what things doctors suggest when they really don't know what they're doing

  24. Well you have another subscriber now! This was such a great video thank you. I'm trying to learn about pacing and I'm finding it all rather complicated and overwhelming! What you said about early days and looking for signs from.your body, specifically relearning these signs, makes so much sense.

    It's very early days for me, I've been struggling with fatigue on and off for a few years, thinking that it was all a side effect of my hypothyroidism, I thought eventually it would settle down. Unfortunately it hasnt. My fatigue and other symptoms are just getting worse and it's clear there is something else going on.

    I'm waiting for further tests, and ME/CFS is suspected. I'm not ready to accept that yet! Hoping its something more easily fixed! But, its clear in the meantime that pacing is going to help me.

    Thanks for your wise words, sorry for the essay….I'm off to watch some more of your videos!

  25. This is a brilliant video so true so happy I found it thank u it has helped me so much u know so much for your age well done and thank u 👍😄

  26. Been suffering from cfs for years now, I was very fit and active beforehand so it has been so hard for me to adjust to barely being able to shower without being bedridden afterwards. I also have arthritis so I have to manage my energy so much and it's hard because working out has always been what cures my stress and helps my mental health issues. It's very rough as you know, so glad that you are on here helping others with our condition!

  27. How did you recover completely? Please make A to z video.

  28. I had a stroke and this is very applicable to me. Thank you! I am learning not to push too hard and crash. It's a work in progress.

  29. Just found your channel, love this video 💗✨

  30. Really helpful, thanks! Great video 😁👍

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