My CFS Recovery - What I Would Have Done Differently
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- Опубліковано 3 чер 2024
- In this video, I'm sharing the do-overs I wish I could give my past self during my ME/CFS recovery journey and things I would do exactly the same.
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TIME STAMPS:
00:00 - Why You Need to Watch This
02:32 - What I Would Have Done Less Of
10:19 - What I Should Have Focused On More
14:08 - Why Language Matters When You're Unwell
15:58 - The One Thing I Wish I Discovered Sooner
16:28 - What I Would Focus On the Most If I Could Go Back
18:07 - No Regrets: The Right Calls I Made
…
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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.
#cfsrecovery #cfs #mecfs #recoverystory
👉 ✅ Come join me in my new course! 🧠 Brain Retraining 101: For ME/CFS and Long Covid Recovery. Enroll now: raelan-agle-s-school1.teachable.com/p/brain_retraining_101
I have to say also though, that there is a rhythm to recovery and to becoming wise and that we are obsessed with efficiency in the US, but if you had not gone through all of this you would not have the wisdom you do. You also maybe would not have met your husband or started this channel, etc. so I believe there is not a rush to recovery but finding a way to learn with each step and learn to appreciate each day along the way and take what serves you and leave the rest. I think you had to learn all of these things so that you could eventually support all the people that you do. If you had recovered quickly or easily, I’m not sure you would be who you are today with so much to offer others and so much energetic support to those suffering. I hope this makes sense. You shine your light. And often those who’ve experienced the most darkness can shine the brightest light. ❤
I love what you’ve said and I agree. The journey has its own value. My therapist was talking to me about pacing two years ago but it only really sunk in within the last few months. I guess I just hadn’t been ready for the message until I was. I couldn’t have rushed that.
Fabulous perspective! What beautiful sentiments. I thought the same. The hard way, but how many, many people she is helping with her intelligence, journey, communication skills, and her former social work M.A. level, etc.
Amen to this!
Very true
Couldnt agree more! I was sick for 3 years now after my third vaccination. Nothing helped, no doctor, no suplements, nothing. Found the brainretraining concept, tried it since june and started working again in august. Im telling you i had crazy Symptoms the first 3 Weeks every single day. Heart was racing, crazy brainfog, felt dizzy all the time but i trusted the process. Kept my composure and put all my time into recovery and here I am. I can work again with no symptoms at all. It got better every week after the third week because i did the retraining in every possible situation. After 3 years i finally feel normal again. It is 100% possible to get out of this. I startet working again before but i always ended up crashing bc i didnt know what was happening and got panic over symptoms, but this will never happen again. You guys can do it too!
What brain training did you do?
That's amazing! Did u follow a specific programme ? There are so many and its hard to know what to choose! Please share!
Also interested! Been sick for a year so far, and I was close to signing up to hyperbaric therapy again, but I might give this brain retraining a go!
Following
I didnt follow a specific programm, I just applied the technics from raelan and miguel batista. But If you cant do it on your on, apply to one programm that fits you. Its not that complicated, its the consistency that makes the difference. You can see your symptoms as a possibility to give your brain a chance to rewire every time they come up. For me it was some deep breathes and "I am fine, Symptoms are there but they will go away, they wont hurt me" over and over again until your brain reacts different. When you panic or concentrate on how bad your are feeling and how terrible your symptoms are, you will stay stuck. React different in a kind way, give yourself the time and you will heal!
Chronic illness is big business. I also came to the conclusion that the desperate pursuit of getting well was causing me so much stress, which was hindering my healing. I’m not to the other side yet but I’m in process. Things began to shift when I continued to focus on rest, meditation, dealing with childhood trauma and being gentle, patient, and compassionate with myself. Neither allopathic, integrative, nor functional medicine is a panacea. We have to be very careful about who we trust to collaborate with in our healing journey.
Oh man! The diet fixation is really an American thing. I did all of the same things everyone else has done. I wasn’t vegan but I was vegetarian and dairy free which is close. Along with gluten free, low carb , Yada Yada. None of it helped. Some seemed to make it worse. Now, I focus on intuitive eating and listening to what my body needs.
I agree!
Totally agree, diet took me down so many paths. Similar to the supplements. I just eat good old fashioned whole foods now. I eat what my grandparents probably ate.
This is all such good advice! Although I’m still on a recovery journey, I definitely agree the biggest key to my healing has been understanding the nervous system, vagal nerve theory, limbic system etc. and just understanding that is the root of all symptoms so I don’t need to focus on them or chase symptoms. I found brain retraining like DNRS helpful in a way but it also lead a lot of perfectionism and for me it didn’t bring a lot of joy. But understanding the basic concepts from DNRS was foundation to recovery! And the moral support from groups. Then I have just worked on my own to implement what brings my nervous system healing: proper rest, positive relationships, nutrient dense foods, music, gentle movement, setting boundaries, not comparing myself or my abilities to others, and incremental training… which like you said can cause small setbacks but just “doing it afraid” and surviving has given me so much motivation and joy. It’s all about pacing and balance. I stopped living in fear and stopped believing there was something wrong with me. My faith in God has also been an important part. ❤
Setting goals is also so important combined with visualizing yourself doing it and how you’re gonna get there! Also just giving myself pep talks haha. Telling myself I can do those things, changes your brain!
Did you have much pain with your CFS
Yeah, what I got from this video was that recovering our vitality has a lot to do with reconnecting with our sense of self, and so that necessarily will look different on different timelines for us all. We get trained to learn in school from the outside in and it's a paradigm shift in and of itself to begin to learn to reorient that learning from the inside out.
Well said!!
❤Extremely important point you mention here. We need to learn from the inside out.
So true!!!
Raelan agree with so much of what you said! I have made a lot of those mistakes myself, but a wise man once told me if you don’t make mistakes, you don’t do anything so we’re always gonna make mistakes. We just need to learn from them. Thanks for your encouragement and wisdom!
Thanks, Greg! Mistakes are part of progress. Keep learning and growing! ❤️ 🌟
Mistakes are they way we learn ❤
I am in the stage where i cannot sleep, really bad anxiety, panic attacks, the nerves flare up in my body and i shake. It is terrible at time. I guess to heal from long covid is mind set. Time, do not worry, tell yourself that you are healing, you are getting better. Do not put pressure on yourself. It will take time. Than you will heal. That is what I saying to myself. One day I will be truly healed.
If you are still having insomnia get yourself some white chestnut rescue remedy spray. This was me the past 5 weeks. Have finally slept the past 3 nights
I am working on getting over long covid that I have obviously had since August 2022. It is frustrating to be sick and not know why. But I am starting to use my pendulum and dowsing rods to get answers. So they tell me to ignore diets, exercise, medical techniques that obviously don’t work. I am learning about so many things that you suggest that I am starting to use like the meditations, positive thinking and affirmations that are starting to work. None of my doctors nor hospital even acknowledge long covid so there is no support there. Thank you for all the information. Best I’ve found so far😂
Raelan, this video is recovery GOLD. Thank you! You said something in a recent video about lifting one pound weights if only to teach your brain that lifting weights is a safe activity. I’ve started doing that - propping up my weight bench (that I got as a gift three months before I got COVID and barely got to use) and doing a few bicep curls with the 1lb weights I got years ago with a Billy Blanks Tae Bo video 😂. I’m soaking in everything you have to say. The diet and supplement fixation has to end also. I totally agree. I wish I could get back all that money!
It totally works. I started at 1 minute on the elliptical. Adding 1 minute per day. Then 2... Today I did 1 hour.
You totally should not be using Billy Blanks though. Use Liz Weavers Cardio Karaticise. JK, Liz Weaver is my wife and I produced the video. I have no idea if its even still available. We did beat Billy on the charts for one day though
@@philweaver457 ha! Those Billy Blanks videos are from a long time ago. I’ve been sick for 3.5 years and haven’t done Tae Bo in probably 5 years. But I’ll keep your wife in mind when I get back at it.
@@amysin963 yep 3.5 years for my wife and I as well. I'm pretty convinced that those of us that got the original strain were the hardest hit. Have not been in any of the groups for a long time now but that 3/20 infection date is the one that came up over and over among the worst. I think Gez Medinger did stats on that. Not 100% sure on that but I know thats when he got it.
Wow, Amy that's a great move towards retraining. I'm rooting for you! ❤️ It brings me so much joy to know that you found the video helpful! 🌟
Thank you for this video. I agree with you so much on the de-cluttering of my brain, and just define a path forward and stick to it for a while. I’ve been so messy with this in the past due to anxiety to get better faster, it only got me worse. Now I am more serene and praying more to God to guide me so I can choose wisely.
So good to hear! Keep moving forward with hope 🙏️❤️
I was nodding through a lot of this! Gut health is definitely near the top of the list for me too. Over time I've very gradually been able to manage more. I'm not "recovered" yet, but incredibly improved since I first became ill in late 2010. Crochet & my faith have definitely been super helpful for me, along with my wonderful hubby & family. Thanks for this excellent message. 🥰Blessings from South Australia💕🐨
So happy to hear that you have improved so much, Kerry! ❤️❤️
@@RaelanAgle 💕🐨
I value these tips so much! We really do try ANYTHING to get better. Your channel has so much amazing free information. I've gained so much from you
So glad! ❤️
Thank you for sharing this. From what i see it is about tuning in to us. I believe in this and look forward to getting through this. The focusing on yourself is the key and listening to your body. The irony is so many people are told they have anxiety and then told not to pay attention to themselves and offered medication which further breaks the mind body link. Good job
Thanks for the insightful comment, Chris! 😊
Thanks for this video. It resonated a lot with me. I’m going to try to post it on the Canadian long haulers Facebook group. I wish I’d seen it at the beginning of my LC as I made many of the same mistakes.
Supplements eventually I couldn’t even keep down…and I stopped taking them cos I figured my body was saying a hard NO!
I also tried too many things at once and just tired the hell out of my body, and probably made it worse.
I think what was the worst part in those early days for me was feeling alone in a battle that I could win if I just fought hard enough and long enough. It’s like everything I knew was wrong. I had to sort of give in and learn acceptance before I could progress. And make the mind-heart connection.
One thing I can definitely say is alcohols does not help at all, and I didn’t realize until fairly recently what medically moderate drinking ( a couple of units a day) was very very bad for me…any alcohol does damage to me, and once a week or with a few days in between is tolerable, but the cumulative effect of moderate daily drinking is too hard on my body. I fee so much better if I avoid alcohol altogether, to be honest. Even though I love wine so much.
I have an an OT who’s helping me a lot with resetting nervous system. Before I had her, I was very depressed because I couldn’t sustain improvements from all the other things I tried. If nothing else she’s helped me understand what’s happening in my body, and to accept the recovery at a slow rate, and focus on strategies that work each day.
Question for you, how has your life changed from pre-illness to post-recovery? Did you make many changes to work, career, relationships, outlook, etc… to be able to sustain your recovery? Or did you return to your “old life” as it was?
Thanks again for your video. ❤
Alcohol initially relaxes me but the I get rebound anxiety and messed up sleep, even from one drink. So I quit alcohol too.
Thanks for sharing your journey, and it's great that you resonated! So many of us made the same mistakes in the beginning. I totally get what you mean about trying too many things at once; it can be overwhelming. And feeling alone in the battle early on, I've been there too. ❤️
As for life changes, I think it's virtually impossible to go through recovery and remain the same. It's an intense experience, isn't it?
@@anitas5817 impact on sleep alone is reason enough to avoid it…it has such knock on effects if you have bad sleep, eh?
Do you miss it at all? I haven’t managed to cut it out completely, but it’s more like on an occasion, like dinner with friends or a weekend away with my husband sort of a thing. I’m trying to find that balance between enjoyment and wellness….can’t say I’m striking it right every time but definitely getting better.
So many people have recovered but I wonder if anyone has recovered in the heat of stress. For example, i am self employed and a single mom to a teenage boy with no family nearby for help. I can’t walk away from my career. Since I know work stress is a major trigger, I wonder if I can get better without completely leaving my career. I have tremendously improved since when I first got sick, but I wonder if I’m on a plateau and won’t be able to fully recover unless I move to Costa Rica and listen to rainforest birds all day in a hut.
You can get better 100%. Total stress avoidance is impossible and not actually a good thing as life is full of stressors, a lot of which is out of our control. We just need to find aways to handle our reaction to the stress...there are a ton of techniques that can help you with this...brain training is a big one of course. Remember how resilient you are and that you are not broken ❤
20 month in LC and you know what, one day I will chare my recovery story at your chanel🙂
I dont know how or with what I will recover, but I do know that that day will come, its my inner voice that is tell me that 🙂wish me luck, like I do wish luck to all of the suffering people out there in the world, one day we will selebrate our rebirth, for sure...........LG
Thank you ❤
I'm feeling more positive now.
Wonderful!
"Symptom Flare" takes off so much charge and judgment rather than, "crash."
That all resonated with me. I did almost every single thing you wish you hadn't and found my recovery journey by leaning in to all the things you wish you did more of/kept. Gratitude is a big one for me. I feel so grateful for living in an age where I can connect with you and Dan. There is so much misinformation, and this channel was a filter in that regard. The other thing I feel that helped me recover was realising that the solution was simple and possible and not complex and endless. If I had to take 3 things in the Long Covid/CFS desert island it would be: movement, brain training, hope (&joy lol)
I also did talking therapy, it's tough doing it on your own
The other secret sauce is... starting to tell people you are better and not leaning into it and identifying with it. Tough but helpful when you are on the last mile of this. Otherwise the last mile never ends.
❤️ ❤️ Keep rocking it with movement, brain training, hope, and a massive pinch of joy! 🏝️😄
Great video, thank you! 🙏
Something interesting I am seeing in my whoop data. It is registering my stress levels much lower as I introduce exercise. Both during activity and non-activity. It drops very fast after exercise. And each day it takes me far more exercise to reach the same or even less strain levels. The daily difference is dramatic. Would never have guessed that results would start accelerating so fast. At the rate I was going before it seemed like it would take another year or more.
It's incredible how exercise seems to be impacting your stress levels positively. Keep up the fantastic progress! ❤️
Gosh, this is ever so helpful, thank you so much for sharing this. I resonate so much. After 10 years of trying (sooo hard!) to get well, I've just started on the mind-body recovery path, and am seeing big, positive improvements already. I have a little question about gut health: years ago I was told I probably have SIBO, candida, and histamine intolerance, but having delved into this work, see that because I've lived in nervous system dysregulation for so long, my brain shuts down the digestive system, so am guessing this is what's caused the gut issues. I stopped eating fermented foods but would like to add them back in. Having written this, i'm thinking I need to continue to focus on calming down my nervous system before introducing fermented foods... I guess I've answered my own questions, but wold be interested to hear your thoughts 💚 Thanks again, my lovely, I'm so glad I've found you!
I'm so happy to hear you're finding what works for you, Helen! ❤️ Trust your intuition and continue focusing on calming your nervous system; you're on the right track. 🌟❤️
Thank you lovely @@RaelanAgle
this is one of your best videos yet. thank you for your work.
Thank you for sharing your experience and helping us. Thanks again.🙏🏾
Thank you for making this video, Raelan. I really appreciate it and I’ll probably watch it again and take notes.
Excellent advice as usual, thank you 🙏
THIS THIS THIS. (This mirrors my own experience almost exactly.)
You are helping me so much. I will recover.
Great advice! Nevertheless, if people do not try some supplements and some form of detox and/or microbiome fixing, there is a high likelyhood that they will always have doubts if this would at least provide a little relief. I would probably recommend to use some basic supplements for up to 5 months to make sure that this is not going to get you somewhere. E.g. Omega-3, Magnesium, Zinc, B-complex, Tryptophan, Tyrosine and 2-4 bottles of Cleanslate to detox will not bankrupt you. And if people can afford it, investing several hundreds of dollars in supplements for Mitochondria health can also rule out any doubts that symptoms are Mitochondria-related.
The real problem starts when you do not stop taking fancy supplements like Mushroom blends or specific detox supplements since you have high hopes that they will start working if you "just" take them long enough.
Absolutely 100% agree! Very good video!
Thanks a ton! 🌟❤️
Thanks Raelan - this is super helpful. I love your approach, pragmatism and optimism. Thank you 🙏
You are one awesome human!
Thank you! ❤
Wow, thank you so much ❤️
Such great advice Raelan! Thanks x
Glad it was helpful, Miranda! ❤️
It’s very helpful. Thank you. 🕊
So glad!
I had a similar experience. You will get the most depressing stories when you search for Gulf War illness. It's better if you search for information on each condition separately.
Thank you that was really helpful. I too have spent thousands. I’m going to reconsider the supplements I take❤
Fantastic post. Very helpful retrospective perspective. Thank you!
Thanks! I'm so glad it was helpful 🌟❤️
Thanks Raelan. Especially useful to emphasise what people can that are low cost. And that basics of health coach is worth investing in.
Hi Raelan this is really great. Thank you so much
You are so welcome ❤️
Excellent video again, Raelan!!
Your videos are truly so honest and helpful. You have tremendous compassion and care for others still struggling. Thank you. While I’m almost completely recovered, I do all I can to work on building more strength so the concern about ever facing CFS/ME again fades. Your videos are such a blessing, as are YOU!!! Thank you❤❤❤❤
I appreciate that so much, Raven! ❤️
You are amazing Raelan. And I can relate so much. This video is GOLD
Oh, you're so kind! ❤️ Thanks so much!
Thank you SO much for sharing this Raelan ❤ hugely appreciate your generosity and insights, you’ve helped me so so much on this journey ❤😊
You are so welcome, Kate!
Such a GREAT video!!
The interventions we try are so often TOO stressful in themselves!
So the energy and stress cost of the thing we are trying to do - outweighs its benefit.
Yes!!! So very true. I was so close to trying the Perrin technique but something in my gut told me no. I think it would have been expensive and unnecessary and potentially made me worse
Great video Raelan, full of valuable info. As a matter of interest do you still do the Vedic meditations taught to you by one of the guests on your channel, Sam Wystock-Wright? Regardless of whether you do or not, did the meditations initially have the desired affect for you & if so in what way? Keep up the good work, you provide a mine full of great & thought provoking information.
Phenomenal video Raelan ❤ I agree with so much of this. However I do believe in timing...I think we go through a process and do things when the time is right...if we tried to do things before we are ready they might be unsuccessful. I don't think it matters in the grand scheme of things...our experience makes us incredibly resilient now and for the future ❤
Thank you Raelan, a very interesting set of insights into your approach to recovery. I actually have found tracking and troubleshooting individual symptoms quite helpful. Especially for cutting out symptom flares. But definitely will be trying out your holistic approach focused on the mind body connection, and the point about joy.
At some point I needed to stop reading about symptoms and possible causes of me cfs in forums too, so I would recommend having regular breaks and taking note of where I need to be to feel better.
Well said, Joanne! ❤️
Thank you so much for these reminders. I’m 5 years post diagnosis and in the midst of a relapse.
Thank you so much! this vid is giving me hope and that I'm not alone in CFS.
Oh Jane! You're not alone. ❤️
Hi Raelen,
thank you so much! This Video ist Great!!
I can really Relate to all the things you Said!
Just one thing I wanted to ask you, do you have any idea how to deal with a histamin intolerance?
I would love to hear From you!
Greets from germany ✨
At the beginning I only watched success stories and I jumped over the first part where they talked about their story to the what they did to recover part.
WONDERFULLY GREAT Vid! - sounds like it comes down to MIND - BODY - SOUL! I am re and re and re viewing this vid. Soooooooo very helpful. Biggest take-away for me was to get away from the “fix dujour” and ha into take alllllll these recomended supplements. You just saved us money! I am appreciative Raelan THANKS
Relate to SO much of what you said (to yourself)..with ongoing Long Covid, I have come to a lot of similar conclusions whereas at one point, I got so tired of living in fear that I just started listening to my own intuition and told myself...I may die, but I just cannot go on living in fear...that is when I started to get better...
Thank you so much for making this video for us. We really needed it. 18 years for me and I've tried so much and spent so much money. I do need certain supplements because I am 60 years old and have kidney disease but I agree with you that too many supplements are not good. Currently, I am feeling so very sick with over seventy five trips to the emergency room since contracting Epstein-Barr virus 18 years ago. I don't have any family and have one person on the planet who cares enough about me to make sure I'm alive everyday. I guess I'm lucky for that person for sure. Also, trying to live off of $1,100 per month of disability as a single person and not having a car is very tough. Thank God I have a neighbor you helps me sometimes.
I feel that I'm declining so much more lately but I am doing everything I can to stay alive. I know so many of us have the same story that I have.
Godspeed to all of you. May God have mercy on us 💖💞🙏🙏🙏
I'm truly sorry to hear that you're going through such a challenging time.
You're incredibly strong and resilient. Keep holding onto hope! Sending lots of love and positive energy your way. 💖🙏
Sending you big hugs 🫂 so difficult when the money is tight and no one really cares , can relate. Wish you some better days a head ❤😊
@Cactusflower2000,
Sending you healing prayers, peace of mind and lots of love ❤️ 😍 🙏 🤲🏻 🕊
I don't know if you have food charities where you live, like in the US. But we have churches and special food pantries & places such as Goodwill and Salvation Army have donated bags of food & household goods and supplies for those in need. If you need something in particular, make a request so they can call you when it becomes available. That way, you can use your money for things besides the basics & it will go further. Like your meds or supplements. Don't be too proud to utilize these services to make your life easier and have less stress on your mind because it is the key to healing!
You will also be meeting people, socializing, and making new friends who can support you physically & emotionally Maybe someone to go out for lunch or a drive with! This is a huge positive step forward in healing!
At home, what I do, is Tai Chi or take a nice walk every day to increase my strength & stamina. I may meet a neighbor or 2 along the way and have a quick chat, which helps boost my Dopamine and mood. The sunshine and fresh air also contribute greatly! 🌞
I wish you a steady uphill recovery & a blessed and happy life! Namaste 🙏 🕊
You are so strong for persevering through such difficult circumstances. We see you. Sending love and strength.
Thank you everyone for your kind messages.
I appreciate them so much 💖💞
language is so important. now I often use the word learn. I used to say things like: "I am bad in setting boundaries". Now I say "I learn to set boundaries". "I learn to listen to my body", "I learned how to calm my nervous system fast"
cool video, I totally agree, I healed with Raw/Vegan WFPB, and now I eat so differently and more balanced, I love it!!!
I rarely remember I was ill with CFS umbrella plus other stuff...I'm living again and I don't take life for granted...
perfect, no size fits all...I did just about everything you mentioned...I will never forget all of your guidance through my journey,
I only popped in today because I waS CURISOUS ... and I love it, you rock Raelyn...
I am my own expert
I loved this video! I think you mentioned in a prior video about how important having a supportive person in your husband was for recovery. I wonder if you hadn’t had him in your life, if your healing trajectory would have been different? So maybe an addition to the video would be to find super supportive people on your recovery journey?
I noticed you changed up your shelf items in the background. Thank you for getting rid of the reflection of your hands :) Great video. I would suggest the same as well now that I can look back on some things. I just remember telling myself when I was really sick and searching....it should not be this hard. And it wasn't it was going back to the little things....sleep, stress reduction, eating healthy, moving a bit, getting outside, etc.
Thank you SOOOOOO much for your videos. It's beyond helpful and absolutely inspiring to hear from others who have been through it and made it to the other side!!!! Thank you for helping me discover that recovery is possible! I am well on my way there now.
I just got an all access pass subscription to express my gratitude!!! It's the very least I could do after receiving so much support from you and your channel.
Thank you so much, Kerri! ❤️❤️ Much love and all the best on your recovery journey!
Thank you so much for the Lifestyle Pacing Course on SkillShare. Prior to the abrupt onset of a very rare form of Dysautonomia that upended my life, I was very passionate about and coached students and professionals in personal and professional development. It’s just integrated into my pedagogy; what’s education or knowledge with no vision? Everything that I know and have continued to learn felt overwhelming with this disease, though I implemented the important ones around routine, schedules, nutrition, sleep, etc. Your presentation felt light, inspiring, and like I can return to living out my calling in the world-what some refer to as work-which I hope to do in the fall. Like you, my journey has been one of deep suffering, but I would not trade what I learned; because I know it will benefit others. I’m saddened that you had to suffer so much and celebrate your healing and the gift you are to so many. I used to live in the Bay Area and might be relocating to San Diego soon. If I do, I’m going to take you up on your offer to meet with you when I’m in your city…you said that on your interview with Alexandria Albertz.
I feel like crap!!! It's so discouraging. Pain in my lymph nodes, fake fever that isn't there - feel like my skin is burning, feeling half all the time, back pain... so frustrating. I have no idea what to do. I had EBV for a couple months, so it made sense for me to feel awful. Now, I don't have it (supposedly) and I feel horrible. Now I am getting some kind of nasty cold - headaches, itchy eyes, runny nose. Will this ever end. I have been sick on and off for an entire year. Every day I just get up and keep pushing and I have had good days and bad days. It's a nightmare overall. I would give up everything I have just to feel normal again. My poor family have to put up with this and of course it's a hundred times worse for me. The hardest part is being spiritually cut off - I keep praying and seeking God and not finding. I used to feel his presence and his love and blessing - now it's like I am behind a wall.
Thank you! I truly appreciate you!
We will spend $85 on an accupuncture session or $50 on a new supplement yet your videos have been the biggest help in my recovery. Since I am in the middle of my recovery, live alone and am always scared for my finances I cannot commit to supporting you on a regular monthly basis but I am very excited to tip you every once in a while.
I feel that my body is negatively programmed to my house, this sounds crazy, but it seems that every time I come back home from whatever activity, as soon as I enter my house my body reacts to the surroundings by kicking in the fatigue. I went on a few weekend trips recently and always felt healthy when away. I am starting to believe that in order to fully recover I may have to go away for a few weeks or months somewhere.
Thank you so much! ❤️ Your kindness brought me to tears-I can't even find the words to express how grateful I feel. 🙏❤️
About the fatigue when coming back home-I totally get it. The grip of negative association is such a real thing!
Have you looked into the Boulder Back Pain Study (jamanetwork.com/journals/jamapsychiatry/fullarticle/2784694) and Alan Gordon's book "A Way Out"? The focus is on pain, but the principles apply to fatigue too-but only if structural issues are ruled out by your doctor (anemia, thyroid, allergic reactions, etc.) Gordon's book might be helpful in that case -the process is laid out in a very simple and easy-to-follow way.
I know how finances are tight when dealing with chronic illness. Audible offers a free trial, and that can be a workaround to listen to books. Much love ❤️ Wishing you all the best on your recovery journey!
Perhaps you are supposed to move house and ignoring it. There are “sick buildings” that don’t help
Thank you for putting so much on here for us. I have had ME/CFS for 44 years. Hopeful again … that I’ll finally feel well.
Oh, Elaine! My heart goes out to you ❤️
That's a long journey, but never lose hope! So glad the content is giving you a boost. We're all rooting for you! 😊
From the bottom of my thank you for the video on the mantras to say
I have so much less fatigue after 14 months of long covid I am so very grateful it’s really working
Merryn
Wonderful to hear, Merryn!
Low dose 7mg nicotine patches or gum is curing long covid in 6 days , I’m 71 had cf 20 years and long covid 3 years including a constant ear ache from long covid which went after using a patch 8 hours! It’s curing myocarditis and type 2 diabetes , if you doubt it see comments of people who recovered with patches. If this helps just one person it will be worth it
Absolutely agree with every point! I suffered with long COVID after my second Vaccine+COVID infection two weeks later. I spent so much money in suplements, try so hard with the diet, different doctors, therapies that did NOTHING for me! Ok, off course a healthy diet, rest, exercise, nature and a healthy style of Life helps but the only thing that REALLY helps is this approach, regulating nervous system, rewiring the brain and ENJOY LIFE! I 'M fully recovered thank God so keep trying guys!
So true. In the beginning I went to probably four appointments a week (counseling, acupuncture, naturopath, occupational therapy, massage, etc) and it was so exhausting
Great video. Can you explain what type of massage you find beneficial please? (There are so many types)
Hi Raelan! I just listened to your story with Miguel. Then, I was scrolling through your channel and found this. Your journey was just like mine still is. I have been sick my whole life, not understanding and chasing everything and all at once. I'm 61 now and found miguel and you after having severe covid a couple of months ago. I love everything you said about what you wouldn't have done and what you're glad you did. I agree with gut health, parasites, severe systemic candida, lymph system, and vegan lifestyle and now learning pacing and retraning. Learning about the nervous system. Even though I have been learning and dealing with all this , I never had a balanced way. I would be told it was my nervous system and fight or flight stuck in a sympathetic state. Cptsd and trauma therapy. I was never taught or really got the concept of what to do about it. Meds suppliments and so much more. I'm learning now to slow down , pace , and stay calm as much as I can. This is all so new. I was still chacing everything even 6 months ago. I'm grateful to have found you and miguel. Between the two of you and the community I'm in, I believe I will have a better future, even in my 60s. This video was very helpful, and I'm not the only one who went this insane route to try to get well. Now it's recovery time. Thanks so much. ❤️🩹💞🙌🫶💕
Wishing you all the best, Marie! 🌟❤️
@@RaelanAgle Thank you 💞
Love your vids Raelan! I couldn't listen to this one bc of the background music, too much stimulation for me. I imagine the same for some others too
Noted! I think the music was only in the first 60 seconds, but I will keep this in mind moving forward. :)
@@RaelanAgle doh! I should have thought of that 😂
All of This😅
Interesting so many Survivors from the same place! I was considering Infrared... after trying all the other things.
Epoch Health had an Article on the Recent Updates of CFS, I found very informative!
Would this apply to someone who doesn't have cfs but main symptom of nervous system dysregulation is digestive problems and chronic constipation? I have sonmany supplements and constantly trying to restrict my diet.helpsnsome with symptoms but doesn't fix the root issue. Even protocols from drs to fix the gut imbalances etc.
Raelan - could you recommend the specific type of massage that you believe might offer benefits/relief? Every time I consider making a booking i'm overwhelmed by all the different types on offer, and end up not going through with it. I've got myself up to approx 80% recovery from way less, so i'm keen to keep trying things to up the number. Thanks for the upload!
The problem is - I get everything you are saying - but I have no clue what to do to improve - I want to focus on myself but nothing I have done so far seems to have helped in any way that I can feel. I can see better test results from the EBV impact, but I still feel awful all the time.
Raelan - you mention massages. What type of massage do you recommend please? Thanks
Great advice, one thing I'd say about supplements is over my 11 years of recovery I did a lot of reading, different diets, supplements. About a year ago I decided to get some professional help and had a hair tissue mineral analysis (HTMA) with a homeopath/functional nutritionist in the UK. One of the best things I have done, certain minerals have to be in balance with other minerals or you are right, we can make ourselves worse. Really feel I'm making progress now. Loving all the somatic, brain rewiring research too and getting stuck into that. Thanks for your videos, I've subscribed ❤
Thanks for sharing a bit about your journey Sarah! ❤️ So amazing you found an approach that's working for you. 💪❤️
Raelan it’s becoming so hard to watch your videos with all the pictures popping up and zooming in and out. Please be aware a lotof your audience struggle processing.
I kept going and it was just the beginning 😊, I really enjoyed this video - it really resonated. We are so lucky (relatively) to have this condition now that so much info is available, thank you
Thank you, Claire! ❤️ I'll do my best to make the videos easy to watch from the beginning to the end.
Yes, I have the same problem with the visuals.
We can also just listen to the videos. I don’t have any trouble with the visuals but when I have a headache I just listen and don’t look at my screen…
Does it work if you just listen to the video? Sometimes I do that.
I’ve had CF 20 years I’m 71 now with long covid but saw low dose nicotine patches 7mg or gum treats long covid in 6 days. Apart from the symptoms being similar to CF I had ear ache since Covid 3 years & after the nicotine patch being on 8 hrs it went !!! It’s curing myocarditis type 2 diabetes and many symptoms I’ve had twice the energy on the patches ,you can see from comments under UA-cam videos so I hope this helps someone.
My doctor said I was crazy for believing mind over matter, He is saying I have cancer, I have been fighting it for a while now, I'm sick of all the treatment. how can I get better with all these people reinforcing that I am sick. I believe there for it is, thankyou Raelan.
CFS from cancer?
Ever since I started having CFS symptoms 2 years ago, I also started having heart issues (12% of the time arrhythmia, proven by several holter exams). I wonder if other people with CFS also have similar heart issues? Or just random palpitations?
And thank you Raelan for all of your videos. Sometimes it's just too hard to deal with all the symptoms, and your videos are really helpful. I also learned (and still learning) to prioritise myself ever since I have CFS, which is completely opposite to the way I was before.
Yes I do with fybromyalgia ime having a heart scan now as I've got heds diagnosed after s6 years CFS now more fybromyalgia
Random palpitations, yes! I get those and they scare the crap out of me.... and I've heard so many people share the same and they have all recovered
@@christinegalyean56 it's pain worst for me though had palpation s since 2006 mostly lying down
@17:57 is kinda what got me here.
Thanks Raelan this was wonderful. May I ask which brain retraining did you do and which ones are good at teaching and demonstrating the incremental training around POTS, exercise? I am also dealing with Bartonella, Mold colonization, mcas, histamine intolerance and vaccine injury. Been disabled and sick for 32 yrs now
Re POTS watch the long video (not the short one) of What Pots Really Is and his website of same name. He names some brain retraining he did. I think he is contactable too.
I did the symptoms tracking thing for a year and yeah, it really got me nowhere.
❤❤❤
What severity of cfs did you have before recovering, were you ever bedbound at all throughout your illness? I seem to be crashing harder and more frequently than I did two years ago when first becoming unwell with cfs after covid
I’m so sorry to hear that. But I believe there is always reason to be optimistic. My severity ranged severe in the first cold years too ranging from mild to severe after that 😊
@@RaelanAgle Thank you for your reply, I am hopeful recovery is possible and over the past week I've been doing your brain training exercises you recommended on one of your previous videos. Knowing you were severe in your illness does give hope that if you managed to recover then recovery for myself is always possible. Keep up posting your videos because they really are such a great resource.. 💖
Not comments but questions. 1. How could you spend $2,000 a month on supplements when you were not working for such a long period of time? (2). Someplace you recommended the bionic Omega juicer. So I got one. I like it. But it is very Very VERY heavy. You said you carried your juicer around with you. How could you travel (backpacking, no less) while carrying around this juicer which is heavier than any backpack?
In regards to searching for "recovery" and the doom and gloom... could you work toward monitoring your Facebook group so it stays a positive place? It used to be the only group I went to but it's changed so much in the last year. Can you recommend another recovery group? Each group is so different and it's so depressing
Thanks for your honest feedback-I completely understand. Could you help keep the group positive by sharing what has been helpful to you while I figure out a solution?
The group has grown a lot, but we're still catching up on how to manage it better. Thanks for being a part of our community and for speaking up-it helps us all. ❤️
@@RaelanAgle thank you! Will try!
@raelenagle I hate to say it, but I second this. I joined the group a couple of weeks ago and left almost straight away. I’m on the Gupta forum and they monitor every comment before it’s posted, so if it’s too negative they make suggestions of how to make it more positive. They have volunteers because it’s a lot of work!
Everyone is jumping on this brain training stuff... but nowhere on the internet an I see info9rmation about HOW to actually implement it. Ive spoken to a few members who posted recovery stories on this channel, offering brain retraining services. They say they want to help people and that its their mission in life to help people but I'm then getting 'quotes' for thousands of pounds and feel like im getting taken advantage of. Surely there is someone out there who is altruistic enough to share the advice without crippling me financially.
100 pills a day…the female Bryan Johnsons 😅
Thank you Raelan, again and always ❤
Haha, so true! So happy all that supplement craze is long gone 😆
17:52 and maybe 15:00
Yeah I do believe this, but people who’s not working, no saved money, there is no way to go same way as you, that’s the sad reality!
You're absolutely right, and I appreciate you bringing up this important perspective. A bunch of uplifting recovery stories are coming up-people from all walks of life overcoming such hardships. Please keep up at it and don't give up! ❤️
Please tell me, ca. People really really recover, or is it all false hope, im so confused cause so many people think this stuff is just a scam, help
Yes, people do actually recover. I had CFS and about 30 other medical labels for years. It took a lot of hard work utilizing different tools such as brain retraining, vagal toning exercises, somatic experiencing, Feldenkrais, being out in nature, to name a few and once my nervous system could stay regulated on its own things started to shift.
I heard the point things started getting better was when you prioritised yourself and got really selfish and set boundaries. This is one of the biggest barriers for most people especially because of the nasty "it's all about M.E." and attention-seeking jibes. So I'm always curious about relationships people have alongside this. At what point in your recovery/illness did you meet your husband?
What if nothing brings joy anymore😢
This condition can be really tough, isn't it? Please don't stop looking for an answer until joy sparks back! Much love ❤️❤️
@@RaelanAgle yes it can☹️thank you for the motivation to keep going!🙏❤
Do you find joy in watching these videos? Connecting with an online community? Sipping a nice cup of tea? The power of the small things until the bigger things come your way ❤
@@KWilliams22 thank you for the support🙏❤
I had trouble concentrating through all the words. You used so many words. I gave up after six minutes I’m not sure if there was ever a message after that. Your preamble just says the same thing in many different ways.
Research the ATP food supplement folx (f.e. Swanson makes Peak ATP ,... And research vitamin B12 too for better energy regulation) 🍀