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

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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