RECOVERING from CHRONIC FATIGUE SYNDROME. Am I Aiming at ME/CFS Recovery?

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Lets talking about recovering from chronic fatigue syndrome!
Should you be aiming at ME/CFS recovery? What is Recovery? And how do you measure it? What should you aim at instead? How do you Set effective goals and prepare to succeed?
Let’s talk about what I think about aiming for recovery and how it could be setting you up to fail and hurting your chances of happiness and fulfillment.
Do you think I’m wrong with my approach to recovery? (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 RU-vid 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!
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Follow me on Instagram / ellellell_brown
Follow me on TikTok / 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

Опубликовано:

9 июл 2024

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Комментарии : 39

@ElinorBrown 3 года назад

Thankyou for watching this video ! Let me know what you think about me/cfs recovery!

@esterfleurke9309 Месяц назад

Exactly, you don't need to be recovered to be happy!❤ That's how i feel too

@Beth-ni1uo 2 года назад

This a fantastic video, thank you! I've had many ups and downs with my illness, but I've never appreciated the 'ups' because I was so focused on fully recovering. Now I'm trying to be more grateful for my good days, and worry less about a full recovery that may or may not happen sometime in the future

@ElinorBrown 2 года назад

I'm so glad to help!!

@Sueer225 2 года назад

This is a good, realistic approach. The best points of this video: 1. You can reframe your goals, and 2. Work on happiness vs. recovery. Well done! ❤️

@ElinorBrown 2 года назад

Thankyou!

@siobhanchristine-bligh183 Год назад

I think there is a finish line with terms of recovery. You have complete functioning without PEM and without symptoms. Not ability, like being able to do something, more that you can literally live your life without fear of PEM. I think if you have that and you are in remission. I will never get rid of that goal, I was very severe and now my functioning is about 60% baseline. So no we dont need to set arbritary goals, I think you are right with that. But we can still measure recovery in terms of how much we can do. I am VERY grateful for what I can do at the moment, and i still investigate drugs and everything to recover in the long run.

@angelaneilson9567 2 года назад

Very wise points, Elinor. Thank you for sharing your perspective 💖. Please keep sharing.

@kathystoner5239 3 года назад

I've been aiming at recovery and trying so many things and I keep having ups and downs. I needed this video today, because when I hit those flares I get disappointed. I like the idea of just making other goals instead. It would make me feel good to achieve certain concrete achievable goals! Thanks for this video! It really helped me!

@ElinorBrown 3 года назад

You are so welcome! I'm so glad it has helped you 💖 The disappointment on bad days is definitely something I try to avoid but sometimes you just cant help but feel sorry for yourself!! but we've got to try to remember our success and celebrate how well we are doing 💖 good luck with your goals 💕

@kathystoner5239 3 года назад

Thanks!

@dafuqunicorn 3 года назад

Thanks for this input. My partner has Me/CFS and I'm searching for ways to understand and help them. Everyone always talks about recovery and thinks there's an ending point to their state and that's always so disappointing to them. It helps me how to reply and explain to those who don't get it in their stead

@ElinorBrown 3 года назад

I'm so glad that i can help a little! It can definitely be difficult to explain! i hope you and your partner are doing ok x

@marketajonczy628 2 года назад

Thank You for this video. 💛 It is really exciting topic. My friend was diagnosed as MS (multiple sclerosis) patient and after few years she says, she has recovered. (She has no symptoms, takes no drugs, travels the world...) I got covid in 2020 and since that, I have chronic fatigue with PEM, so i think, I have ME/CFS. This friend of mine sent me a book, she has written about her recovery. And the biggest point of her view is, that people diagnosed with chronical disease can lose the HOPE about being fully healthy. She also thinks, that illness is a lessen and challenge to change something in your life. After year spent with looking for, what I have done wrong in my life, intensive psychtherapy and changes in every aspect of my life, I am still ill, but happier and more gratefull for myself. But this jurney was so exhausting because of unrealistic expectations and disappointments. In this point I think, there are many hopes, not just the one about total recovery. And I stopped blaming myself. Illness might be a life lesson, sometimes new jurney and lifelong lesson..

@aglemonlover7709 Месяц назад

May I ask what her book is? And how are you doing now?💕

@aglemonlover7709 Месяц назад

I totally respect your opinion, but thought I would share mine since you asked.:)) I am aiming for recovery because I think that believing with 100% certainty that I can recover is the only way I can. That is because believing it is possible is the first step to making necessary changes (finding baseline, not pushing and crashing, nutrition, sleep, mindset) that will propel me to improving my health and calming my hypersensitive nervous system to the point of full recovery. I do agree with you that having short-term goals and celebrating small wins is so important though!!! I saw this video is from a few years ago, has your opinion changed at all? How are you doing now?💕

@amaria1826 3 года назад

Thanks for this, I've been mainly aiming for just not declining more since I deteriorated quickly. Improvement would be the ultimate goal but recovery unrealistic. With the statistics there's always the problem of did these people actually have ME or were just diagnosed when really something else was going on and they recovered. I think some Drs are quite quick to hand out cfs diagnoses without actually investigating other possibilities. Hopefully new guidelines will help when they're official, I've seen many diagnosed with it when they don't actually have the main characteristic symptoms like PEM. I hope you manage to improve!

@ElinorBrown 3 года назад

I'm glad the video was helpful for you 😀 Yes, the statistics aren't very reliable 😬

@setitheredcap2677 Год назад

I'm determined to recover, but I don't know how. I have one of the healthiest diets you could imagine, mix action and rest, and even if I have a good few days, it feels like I'm not getting any better.

@ElinorBrown Год назад

try not to put too much pressure on yourself I'm sure you're doing great!! And if recovery is def what you want to aim at Maybe set multiple smaller goals on the way to it so you can see your progress and feel accomplished!! Maybe also try to pinpoint the parts of recovery you want the most, like maybe it's social life, work or fitness related and focus on the specific path, practicing what's important to you and maybe letting other things you care less about slide a little! Also remember that recovery is certainly not a straight line, so don't feel bad when you get setbacks!! hope this helps, it's a tricky topic 💜

@kuldipChoudhuryVlogs 3 года назад

I can run,walk about 30 minutes. But a little fatigue all the time. However I'm recovering. But when i do heavy workout i got exhausted and it sat me back..So I'm doing it very gently and carefully. Please pray for my full recovery. Love from India❤️❤️

@ElinorBrown 3 года назад

Make sure your not pushing too far but other than that good luck with increasing your fitness!

@kuldipChoudhuryVlogs 3 года назад

Thanks for your great advice. If you are on the road of recovery,then you should try Giloy juice early morning and every day Chawanprush. Both are Ayurvedic products. You can try it.

@ANUPSINGH-it8jj Год назад

@@kuldipChoudhuryVlogs are bhai tumko v cfs hai kya mujhe v hai

@aglemonlover7709 Месяц назад

How are you doing now?💕

@mattrobinson3947 Год назад

This video is just what I needed right now. Exactly on the same page as you here. Are you UK based? If so where abouts? I'm from SE London 🙂

@matthijsreenders5397 3 года назад

Don’t settle for less than full recovery! You can recover, really. There are many people recovering from it, look for recovery stories here on youtube. Of course, it is good to celebrate progress, but don’t give up on full recovery!

@ElinorBrown 3 года назад

I know that recovery is still a possibility, but i know i can be happy without it. and i don't want to just wait around for something that might not happen before I can begin living my life. I'm living my life assuming I'm not going to recover and if i do then that would be nice. 💖

@someoneusa 3 года назад

I agree, I've had it for over 21 years and believe in recovery. However I'm not relying on it. I'm at peace and doing my best to thrive within my limits. Thriving looks completely different, but it's still thriving when you can overcome the mind and appreciate the small stuff and the progress. Getting out of victim mentality is huge. Stopping the comparisons, who's sicker, who's truly got CFS. Who cares, being sick, especially chronically, is being sick and it is hard for all of us. We have control over our thoughts, we can be ok under the circumstances or not. It's not easy but it's manageable. I'm genuinely happier now and doing better mentally than I was when I was well. Happiness comes from within regardless of our circumstances. It doesn't mean that you are always cheery, not even close but you don't have to be held prisoner by your condition.

@numptyy9430 Год назад

With a 5% chance of full recovery, most of us just want to get better, unrealistic expectations can seriously mess with the mental health.

@richardwype7622 3 года назад

Same thing happened to me in 2020, probably from all the stress. May I ask where you have focused your efforts?

@ElinorBrown 3 года назад

I’m currently just focusing on my doing well in university assignments and exams! 😊

@AGirlCalledNaomi 2 года назад

I love your makeup

@ElinorBrown 2 года назад

Awww, thankyou!! 😍

@AGirlCalledNaomi 2 года назад

@@ElinorBrown Just an idea but it would be lovely to see maybe, if you want to add this to your channel some make-up tutorial videos or some fashion or other beauty themed videos?