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

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  • เผยแพร่เมื่อ 20 พ.ย. 2024

ความคิดเห็น • 51

  • @emilyvbr1878
    @emilyvbr1878 3 ปีที่แล้ว +45

    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

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +12

      It is super difficult when a doctor tells you to do something that just feels so awful!! but you are not over sensitive, its just bad advice!!

  • @joclairemitchell9591
    @joclairemitchell9591 2 ปีที่แล้ว +20

    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!🎉🎉🎉

  • @bedhead-studio
    @bedhead-studio 3 หลายเดือนก่อน +4

    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.

  • @jasonmatthew8650
    @jasonmatthew8650 3 ปีที่แล้ว +29

    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!

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +6

      I'm sorry its so hard for you at the moment! I was also very fit and active before i got sick and its a big life change, that can be really difficult, but you will get there!! your welcome!

    • @jasonmatthew8650
      @jasonmatthew8650 3 ปีที่แล้ว +7

      @@ElinorBrown thanks! Yeah I have to do at least some light exercise every few days to help with my arthritis pain, also just to de stress and keep my heart healthy. But it's really hard on the days you feel good to know when to stop. You feel fine in the moment and then if you overdo it, you're down for weeks.

  • @nnb02
    @nnb02 10 หลายเดือนก่อน +6

    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

  • @esterfleurke9309
    @esterfleurke9309 6 หลายเดือนก่อน +4

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

  • @TerminalDoesntMeanGoodbye
    @TerminalDoesntMeanGoodbye 2 ปีที่แล้ว +7

    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!

  • @kimm3473
    @kimm3473 3 ปีที่แล้ว +14

    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.

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +2

      I'm so glad its helpful for you 💖 learning not to over work yourself is a long process for sure!! 💖

  • @Kathleensplace71
    @Kathleensplace71 2 หลายเดือนก่อน

    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.

  • @kaz555
    @kaz555 2 ปีที่แล้ว +5

    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.

    • @ElinorBrown
      @ElinorBrown  2 ปีที่แล้ว

      Glad it was helpful!

  • @ak-19healedandfree
    @ak-19healedandfree 2 หลายเดือนก่อน

    Thank you so much. This advice is really useful.

  • @cece9781
    @cece9781 2 ปีที่แล้ว +4

    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)

  • @homemakersheart3614
    @homemakersheart3614 2 ปีที่แล้ว +2

    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.

  • @lonniemason3084
    @lonniemason3084 2 ปีที่แล้ว +2

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

  • @halessahmcraze2178
    @halessahmcraze2178 9 หลายเดือนก่อน +1

    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

  • @sarahyardley1923
    @sarahyardley1923 7 หลายเดือนก่อน

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

  • @DraganAlves
    @DraganAlves ปีที่แล้ว +1

    Thank you!!

  • @FinnTheInfinncible
    @FinnTheInfinncible 3 ปีที่แล้ว +3

    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!

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +1

      Thankyou! I’m so happy to help! Good luck with your diagnosis process! 😊

  • @joybird144
    @joybird144 2 ปีที่แล้ว +1

    thank you for this you dont know how much youre helping

  • @ritagiegelfitness3147
    @ritagiegelfitness3147 2 หลายเดือนก่อน

    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?

  • @crashtestdummy2686
    @crashtestdummy2686 ปีที่แล้ว

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

  • @suzannethompson9261
    @suzannethompson9261 3 ปีที่แล้ว +5

    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.

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +1

      That's so interesting!!

  • @danw32
    @danw32 3 ปีที่แล้ว +2

    Really helpful, thanks! Great video 😁👍

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +1

      I’m so glad you found it helpful! Thankyou! 😊

    • @danw32
      @danw32 3 ปีที่แล้ว +1

      @@ElinorBrown 😁😁😁

  • @melissma100
    @melissma100 3 ปีที่แล้ว +2

    Just found your channel, love this video 💗✨

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว

      Yay! Thank you so much 💖

  • @JixieDyeAuthor
    @JixieDyeAuthor 2 ปีที่แล้ว +3

    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)

    • @ElinorBrown
      @ElinorBrown  2 ปีที่แล้ว +2

      It's hard but you're doing your best!!

  • @ik7357
    @ik7357 2 ปีที่แล้ว

    this was exactly what i needed. thank you 💖

  • @jackieedwards2023
    @jackieedwards2023 3 ปีที่แล้ว +1

    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 👍😄

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +1

      I'm so happy to be able to help! I've had ME/CFS for around 7 years, so i have learned a lot through trial and error!!

  • @TheRoarWithin
    @TheRoarWithin ปีที่แล้ว

    I love the t shirt.

  • @electrogeek77
    @electrogeek77 2 ปีที่แล้ว +1

    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?

    • @ElinorBrown
      @ElinorBrown  2 ปีที่แล้ว +1

      sorry for the late reply! For me, the resting before you do the next thing is part of pacing, i would also say identifying what activities need rest break directly after them and making sure you have time etc to rest is a huge part of pacing (breaks could be ten mins or weeks) and not scheduling too many things of that nature in a row is also important in pacing. The main thing is listening to your body, resting when you need to! You got this! Hope this helps a little 💜

    • @electrogeek77
      @electrogeek77 2 ปีที่แล้ว

      @@ElinorBrown This helps a lot! Thank you!

  • @oralie.bordeaux
    @oralie.bordeaux 10 หลายเดือนก่อน

    Have you considered stachybotrys mold being the cause?

  • @kuldipChoudhuryVlogs
    @kuldipChoudhuryVlogs 3 ปีที่แล้ว

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

    • @ElinorBrown
      @ElinorBrown  3 ปีที่แล้ว +7

      I am not recovered!

    • @kuldipChoudhuryVlogs
      @kuldipChoudhuryVlogs 3 ปีที่แล้ว

      Aw sorry to hear Elinor. I'm sure one day you will recover completely. Watch Raelan Agle videos on youtube. She recovered completely from her sever illness.