Amanda's 20-Year ME/CFS Recovery Journey
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- Опубликовано: 26 июл 2024
- Amanda shares her 20-year recovery journey with chronic fatigue syndrome (ME/CFS) along with the things that allowed her to make significant progress toward her recovery.
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CONNECT WITH AMANDA:
👉 Instagram - / amandasuutariart
KEY TAKEAWAYS FROM RECOVERY INTERVIEWS ►►
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TIMESTAMPS
00:00 Meet Amanda
01:18 Why do people often get stuck at 70% recovery
03:59 The explosion of understanding we’ve had in the last 5 years
06:28 Amanda’s s stages of healing - what approaches worked the best
13:08 What brain training activities Amanda does
18:59 Amanda’s time at a health retreat center in Peru - using ayahuasca
22:04 Connecting with a healing community
27:54 A combination of challenging and supporting her body
31:59 Finding your discipline
34:05 Amanda’s inspiring message to others facing similar health conditions
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REMINDER: This is for information purposes only and nothing I share should be considered medical advice. Please make your own assessment, do your own further research, and consult your trusted healthcare professionals before deciding if anything I talk about here might be right for you.
#chronicfatiguesyndrome #cfs #chronicfatigue #mecfs
What a beautiful, intelligent, inspiring woman. Actually both of you are 💖. Deep, rich, authentic conversation. I found it so helpful to hear Amanda say she was at 70%-ish for a period of time and then (as one of my alcohol recovery friends used to say "life got lifey") and she relapsed hugely. That's what happened to me, and 9 months in to that relapse I am applying everything I learned in the program that got me to 70% to very little avail. It's pulled the rug out from under me. The truth is we can work out butts off to get to a certain level of recovery, but we have no control over whether life is going to throw us a curve-ball that means functioning way beyond capacity for (in my case) months. Finding this conversation today gives me so much needed hope. And yes, dear Raelen, thank you for doing interviews with folks who aren't climbing mountains right now!
Thanks for doing this interview! I really appreciate the “not quite recovered “ interviews!
Paradoxically (I hate that word too) when we feel least able, we have to be the most resourceful and resilient. Able but not quite able. Feeling the need to do all these new weird and wonderful things for recovery, in addition to the daily life that has to go on to put food on the table and keep a roof over our heads - feels exhausting. It’s like a second job in a parallel life. But that’s not the most positive of statements. So small positive steps, to support and look after me at this and every moment, in the moment. No pressure to do every programme and healing thing, no stress… (no stress, healing isn’t a sympathetic ‘on mode’! What do I need right now, to keep me stable and on a steady upward trajectory? One small step…
Totally with you on this. Totally.
Yah! You talked your way through it.
I agree. Spending to much energy and making the recovery be stressful is like the opposite of what we need. One step at a time. (Even though we fucking want it to be over now….lol)
Spoken in such a way that makes brain training seem more doable, less intense. Thank you, and bless you both for the inspiration and encouragement such interviews bring to our community!
Thank you for this interview. That helps a lot. It is so useful to see people with similar experiences. I deal with this illness for about 15 years. Back then I didn't know it was ME/CFS. I had so bad experiences with the people around me, when I first became sick. That is the reason why over the years I told less and less. I think only my partner knew how bad it really was. It is so frustrating, because I am a very open person. I tried to explain myself, but I could see that a lot of people didn't believe me, some felt very uncomfortable and some tried to help me and gave me really bad edvice. Now I have a rule, that I have to tell the people in my inner circle two times a year how it really is. Just the facts, no explanations. And I would love to explain myself. I have reasons why my career in the field I studied ended. Why I can't come to a lot of social events, why I disappear for months, why planning things can be difficult. Since everybody is thinking whatever they are thinking and I know that most of the time it is wrong, I really learnd that it is not so important what most people think. But it is very important that some people get you. Thats the reason why your interviews are so important.
When people think I am lazy, or complicated, or stupid, that's okay. What I still struggle with, is when they think I am fearful. I had so many dark times, when I had to be so brave and strong and resilient. I think I am a very brave person. An overstimulated nervous system causes a lot of fight and flight respons. But that is not the same as being afraid.
Raelan
Another great recovery story! Your work is helping more people than you will ever know!
A thank you for all your time, energy and efforts! Your content about how to recover, interviews, etc. have given me everything I needed to know (in addition to some further research on my end) for my own personal healing needs. You deserve this!
Purna, you are always so thoughtful and generous. I really appreciate this and I very much appreciate YOU! You are a beautiful person, thank you 💛
@@RaelanAgle Insert Heart melting emoji if it existed. ;) Same back to you, Raelan!
Great interview of what I've watched so far. Thanks to you both. So difficult to compare percentages though I feel. To get to 70% for one person may have been a totally different looking journey to another's. One person's healing puzzle to complete recovery might be 10 pieces in total and another's 10,000. That's not a criticism of either of you of course, just a reflection. For me there has to be more balance in recovery, the all or nothing approach has obviously been beneficial for yourself Raelan and others, going all in, but I worry that we hear not of the many others who might feel like they've missed out on a big part of their lives by fixating on health recovery WITHOUT the happy ending that you managed to achieve. I remember reading an article from perspectives of older people with ME and some of the points made were exactly that, wishing they'd spent less time and money on searching for a way out of it and instead more acceptance and working with what they already had (something like that).
Again though, just an after thought. Still a big fan of this channel and all the hope you provide to people. And probably in two days from now my perspective on this will be different (wouldn't be the first time lol)
X
Thanks so much for this! So many of us are "stuck" at 70%. I did Dan's program, and just an FYI, his last name is pronounced like "knifer". He is just brilliant too!❤️🤗
My favorite part was when you said "I wish just one day you had this so you can understand" not being negative or mean but it's true and oh-so funny!
Your amazing Raelan thanks for your work and support!
I appreciate that, Miranda!
Great story, thanks.
Thank you so much Amanda and Raelan. Good description, good information and it helps to hear you discussing about discipline and the fact that it has to be done even after recovery...
This is one of my favorites!
Thank you!
Just curious if anyone here has seen any recovery stories on either this channel or another channel about someone recovering from VERY severe ME/CFS? Thanks.
Hi Rosie, Since this is an important question that many people have asked, I now have a playlist for this: Severe & Very Severe ME/CFS Recovery Stories - ruclips.net/p/PLNX_MIJ_pJAZJxMMhyQUE-1a_WGwalhVm
Thanks, Raelan! You are a wealth of resources and a wonderful human - I really enjoyed our conversation. ❤
Whats that rattling ??!!!!
I’m so curious too!! 😆
a curious kitty playing around Amanda's mic source?
@@nothingtofind9099definitely thought a kitty playing too!
Ha ha! Sorry bout that. My kitty was asleep on the bed the whole time. I think it was my hair rustling against the microphone. I was trying to stay still but I think my mic was really sensitive.