I have CFS and fibromyalgia. It’s absolute hell and i have lost myself and am so incredibly depressed. And I absolutely hate how most people who make videos because it all just feels so helpless… you are positive. Thank you.
Thank you so much...holding on by a thread takes a lot of effort and sometimes seems too difficult...but this is encouraging as it gives tangible strands to grasp.
I'm so happy to hear that you found this helpful, Dorothy, and sincere thanks for taking the time to share this. Holding on by a thread is so incredibly difficult and I found that any thing that helps make things a bit easier or more enjoyable is definitely worth the effort.
I am so grateful for this video on so many levels!!! Hearing you express the things I struggle with so much helped me not feel alone in my struggle. Your insight and guidance is invaluable to me!!!it is just what I have been needing!! Accepting where I am,knowing I'm making progress even if it's not immediately evident and putting my recovery at the forefront and understanding I eventually will be able to participate and engage more. Thank you so very much!💗
Such a great video! Thank you. I hope this doesn't come across as a negative but as someone with CFS, I found it quite hard at times to take in/concentrate on what you were saying due to your background music.x
Thanks so much for the feedback, Sarah! That is really helpful and I appreciate you taking the time to share it. I will definitely make the music much quieter (or omit it) in future videos!
i used to have the same problem. if this comes and goes, from day-to-day its likely because ur mind is too tired for the effort u are asking of it :D Same with the tinnitus i found them both to be my body's signal to me to stop and rest/sleep. If u have constant difficulties, i strongly urge you to rest your mind more by 50% classical music and cross stitch worked for me, when i could tolerate sound and light. anything that gives you 'flow'. Iv not yet been successful with getting a meditation practice, but when i tried, it was often enough mental rest that i could 'buy' a bit more time using my mind that day. I often watched videos muted with subtitles when i couldnt tolerate sound. I still watch with subtitles because i often find myself missing, daydreaming etc and it helps me focus and not go down the rabbit hole in my mind hehehe
Great advice, i struggle with every single thing you mentioned and got some new perspectives, especially I will try to keep my circle smaller to avoid loneliness while still not getting stressed out by keeping in touxh with others! I also really have FOMO and feel like the only thing out there that doesn't "wait" for you you is trying to start a family. I don't know if you wanted/want that, but I find that hard to cope with, but I know I can't dwell on that now, and no one ever knows with fertility anyway 😊 and a few months ago I thought I'd never be able to leave the apartment again, and now I can go for daily walks around the block most days, so we never know 😊♥️
Hey Elin! Completely understandable to be feeling that way about starting a family.. I'm so glad to hear about the progress you've made though. So encouraging!
My pleasure, Karen. It's really just an amazing and therapeutic experience for me to share my story and what's worked for me with others. And I think that life with ME/CFS (at any level of severity) is a form of torture, and if something in my story might help someone else or spark an idea for them, then I am thrilled to pass on whatever I can 💛
Sorry if TMI, but ive just realised how long n how easy it is, now, to wash/bathe everyday, walk to shop, buy food, carry it home, cook, laundry, dishes all in one day now if i so choose!
Hey Jo, I'm sorry to hear that reading is a challenge. Unfortunately there isn't currently an audiobook available. Some people tell me that they get the Kindle version and have the Alexa app read it to them 😊
Will I ever recover?? I still need to work and take care of my family… a special needs daughter… an invalid father… I hold the insurance and I have to work
Holly, this is such a depressing statistic, isn't it? ESPECIALLY if you have this illness. I think that it can make you at times wonder what the point of even trying to recover is. I suspect it's still so low because so much more research is needed for this illness. CFS/ME is still so poorly understood and in my experience finding reliable information on how to recover is extremely challenging to find. And without the research, we can't even say for sure if what works for one person will work for another. But people reach out to me all the time with their 100% recovery stories, so it is possible! There is definitely reason to be hopeful at least 😊
@@hollylockman9363 too many of us know that desperation all too well. I'm so sorry that you're facing this right now! I'm sending so many hugs to you for your own healing journey and if there's anything I can do to help don't hesitate to reach out ☺️
Raelan ,,,fourty years of this ,dreams gone even if I recovered today it’s too late for my dreams ,I have had good days but I can never get them to last ,and I’m still doing the same thing ,I know I have an autoimmune disease,not sure if CFS is one and the same ,as soon as I can afford I’m going to a good functional / Integrative dr ,I’m implementing all the life style changes consistently so I don’t understand the roller coaster ,even writing on here is exhausting and takes all I have ,thank you ,love your videos,they say that healing the gut is the key to all illness ,I’m working on it but prob need guidance from functional dr ,all the things you mentioned here I’m doing ,no bad foods !NONE,and when I take vitamins I can feel good ,,I absolutely hate swallowing them daily ,given up foods I love is no problem ,eating stuff I’m not crazy about like fermented mi can do ,but the vitamins grrr
Julie Goff have you looked into brain retraining programs such as The Gupta Program or DNRS? They are designed for people like us with chronic fatigue type of illnesses and may be a missing piece to your puzzle.
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Thanks for the fresh perspectives you provide in this video. Your paintings are awesome! 🎉
I have CFS and fibromyalgia. It’s absolute hell and i have lost myself and am so incredibly depressed. And I absolutely hate how most people who make videos because it all just feels so helpless… you are positive. Thank you.
Hi Kendal, this can be absolute hell, it's understandable that you feel depressed. I suspect we all empathize. Sending hugs to you ❤️
Thank you so much...holding on by a thread takes a lot of effort and sometimes seems too difficult...but this is encouraging as it gives tangible strands to grasp.
I'm so happy to hear that you found this helpful, Dorothy, and sincere thanks for taking the time to share this. Holding on by a thread is so incredibly difficult and I found that any thing that helps make things a bit easier or more enjoyable is definitely worth the effort.
I am so grateful for this video on so many levels!!! Hearing you express the things I struggle with so much helped me not feel alone in my struggle. Your insight and guidance is invaluable to me!!!it is just what I have been needing!! Accepting where I am,knowing I'm making progress even if it's not immediately evident and putting my recovery at the forefront and understanding I eventually will be able to participate and engage more. Thank you so very much!💗
Glad it was helpful, Lisa! You got this!💓
Such a great video! Thank you. I hope this doesn't come across as a negative but as someone with CFS, I found it quite hard at times to take in/concentrate on what you were saying due to your background music.x
Thanks so much for the feedback, Sarah! That is really helpful and I appreciate you taking the time to share it. I will definitely make the music much quieter (or omit it) in future videos!
i used to have the same problem. if this comes and goes, from day-to-day its likely because ur mind is too tired for the effort u are asking of it :D Same with the tinnitus i found them both to be my body's signal to me to stop and rest/sleep.
If u have constant difficulties, i strongly urge you to rest your mind more by 50% classical music and cross stitch worked for me, when i could tolerate sound and light. anything that gives you 'flow'. Iv not yet been successful with getting a meditation practice, but when i tried, it was often enough mental rest that i could 'buy' a bit more time using my mind that day.
I often watched videos muted with subtitles when i couldnt tolerate sound. I still watch with subtitles because i often find myself missing, daydreaming etc and it helps me focus and not go down the rabbit hole in my mind hehehe
Woah! Thankyou for the tip re envy. Gonna reflect on that before I even finish the video. 🙏🏼
💓💓💓
Brilliant advice and perspectives.
So glad you enjoyed this Judith!
Great advice, i struggle with every single thing you mentioned and got some new perspectives, especially I will try to keep my circle smaller to avoid loneliness while still not getting stressed out by keeping in touxh with others! I also really have FOMO and feel like the only thing out there that doesn't "wait" for you you is trying to start a family. I don't know if you wanted/want that, but I find that hard to cope with, but I know I can't dwell on that now, and no one ever knows with fertility anyway 😊 and a few months ago I thought I'd never be able to leave the apartment again, and now I can go for daily walks around the block most days, so we never know 😊♥️
Hey Elin! Completely understandable to be feeling that way about starting a family.. I'm so glad to hear about the progress you've made though. So encouraging!
Many thanks for this
My pleasure, Karen. It's really just an amazing and therapeutic experience for me to share my story and what's worked for me with others. And I think that life with ME/CFS (at any level of severity) is a form of torture, and if something in my story might help someone else or spark an idea for them, then I am thrilled to pass on whatever I can 💛
After 15 years of cfs i al totally desperate..... Everything i tried didnt work😢
There are a few helpful hacks here. Thanks!
I'm so glad you found the video helpful 😊
Great ideas and very motivational!
Glad you like them, Bobbie!
Thanks I really needed this!
So glad you enjoyed this Rivera!
Thanks!
You bet!
Sorry if TMI, but ive just realised how long n how easy it is, now, to wash/bathe everyday, walk to shop, buy food, carry it home, cook, laundry, dishes all in one day now if i so choose!
This is amazing, Kim!!! Yay! Recovery kind of sneaks up on you sometimes, doesn't it!
Great video thank you 😊
Can I listen your book on audible? I can’t read much at mo 🤦🏻♀️ X
Hey Jo, I'm sorry to hear that reading is a challenge. Unfortunately there isn't currently an audiobook available. Some people tell me that they get the Kindle version and have the Alexa app read it to them 😊
Fab idea.. thank you 😊
Will I ever recover?? I still need to work and take care of my family… a special needs daughter… an invalid father… I hold the insurance and I have to work
Why does studies say only 5% of people actually recover?
Holly, this is such a depressing statistic, isn't it? ESPECIALLY if you have this illness. I think that it can make you at times wonder what the point of even trying to recover is. I suspect it's still so low because so much more research is needed for this illness. CFS/ME is still so poorly understood and in my experience finding reliable information on how to recover is extremely challenging to find. And without the research, we can't even say for sure if what works for one person will work for another. But people reach out to me all the time with their 100% recovery stories, so it is possible! There is definitely reason to be hopeful at least 😊
Raelan Agle thank you!!! I would give anything to be recovered and feel better.
@@hollylockman9363 too many of us know that desperation all too well. I'm so sorry that you're facing this right now! I'm sending so many hugs to you for your own healing journey and if there's anything I can do to help don't hesitate to reach out ☺️
Raelan ,,,fourty years of this ,dreams gone even if I recovered today it’s too late for my dreams ,I have had good days but I can never get them to last ,and I’m still doing the same thing ,I know I have an autoimmune disease,not sure if CFS is one and the same ,as soon as I can afford I’m going to a good functional / Integrative dr ,I’m implementing all the life style changes consistently so I don’t understand the roller coaster ,even writing on here is exhausting and takes all I have ,thank you ,love your videos,they say that healing the gut is the key to all illness ,I’m working on it but prob need guidance from functional dr ,all the things you mentioned here I’m doing ,no bad foods !NONE,and when I take vitamins I can feel good ,,I absolutely hate swallowing them daily ,given up foods I love is no problem ,eating stuff I’m not crazy about like fermented mi can do ,but the vitamins grrr
Julie Goff have you looked into brain retraining programs such as The Gupta Program or DNRS? They are designed for people like us with chronic fatigue type of illnesses and may be a missing piece to your puzzle.