My ME/CFS FULL Recovery Story - After Ten Years!

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  • Опубликовано: 30 окт 2024

Комментарии • 113

  • @ishheredia9626
    @ishheredia9626 2 года назад +60

    Glad to see an updated version of this. I joined your FB group in April of last year and am 100% recovered now.

    • @RaelanAgle
      @RaelanAgle  2 года назад +6

      WOW! I'M SO HAPPY FOR YOU! 💓💓💓

    • @alexandrecouture2462
      @alexandrecouture2462 2 года назад +1

      Congratulation!

    • @sarahmaurice3930
      @sarahmaurice3930 2 года назад +1

      That's amazing!

    • @CFSUnravelled1
      @CFSUnravelled1 2 года назад +5

      Fantastic Ish - congratulations - hope you share your story of recovery one day soon.

    • @TS-rv4hf
      @TS-rv4hf 2 года назад

      Love to see it!

  • @davemack2456
    @davemack2456 2 года назад +11

    I thought to myself today “I owe it to the world to heal, so the world can see me and not some washed up version of myself.I want to contribute and make a difference in some way,and it’s very difficult to do that while recovering from CFS.I am so ready to be well and live again”

  • @Bitachon
    @Bitachon 2 года назад +13

    *Your channel should have 1 million subs!*

    • @moniquelemaire5333
      @moniquelemaire5333 2 года назад +1

      I whole whole-heartedly agree!!!!💖😁 Monique 🙂

  • @daniellelblackwell
    @daniellelblackwell Год назад +2

    Raelan- you are amazing ❤

  • @estherringthegack7671
    @estherringthegack7671 2 года назад +3

    I watched your first video when I first got diagnosed a couple of years ago - enjoyed that one as much as this one- it is good to get the update. It’s funny how you don’t feel super comfortable promoting your skillshare course- I note the men selling similar courses don’t worry about that - you go girl ! Remember you are helping lots of people!

  • @amiscary
    @amiscary 2 года назад +3

    Great video. Please don't apologise for your previous videos which detailed your journey. I really appreciated them because you went into a lot of detail and this made it very relatable.

    • @RaelanAgle
      @RaelanAgle  2 года назад +1

      Thank you, Judith! 💓💓💓

    • @amiscary
      @amiscary 2 года назад +1

      @@RaelanAgle and also the fact that you went into a lot of detail made me trust you. I felt that you were authentic and worth following, which I have been doing for quite some time. In fact I'm just about to re listen to one of your videos about movement as I slightly overdid movement this week.

  • @moniquelemaire5333
    @moniquelemaire5333 2 года назад +5

    Dear Raelan,. Thank you very much for your up to date recovery story. Point #4 is very important for me: To stay in a calm rest and digest state. Breathing and slow meditation help so much. Last Saturday I almost got hit in a parking lot by 2 cars, but I was determined to not let it freak me out, because I know that when my anxious state comes about, I feel horrible. Breathe, breathe, breathe, clear the mind, pray...oh my...!
    I have been subscribed to your channel since last summer. From that time to now, according to Dr. Myhill's chart, I am about 60 to 70 percent "cured" from MECFS. With tremendous thanks for all that you do, much love, and God bless you always!!! Miss Monique 🙂

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Monique! This is amazing!!! I'm so happy to hear about all the progress that you've made. Great work!💓

  • @OcelotDAD
    @OcelotDAD Год назад +1

    I can relate so much to this video. I literally went through all of the stages you describe albeit in only one year, not ten. Thank you for this.

  • @ThomasAT86
    @ThomasAT86 2 года назад +5

    Just saw it, congratz on the 10k Raelan!
    Totally get what you're talking about! Stress about healing and all the money spent on supplements that barely do anything have been biggies. I seem to have gone through similar things in the past and react to full pacing with enough movement and healthy lifestyle-mode pretty much like you. Gives me hope and encourages me to really push to get early retirement this year so I don't have to deal with institutions trying to force me into rehab, appointments, responsibilites that always lead to PEM and lasting worsening. I think the movement part is really important, but the usual GET is just way too much for people with CFS. Been in pain therapy where I dealt with that stuff and what you built yourself up to within a year or so, I was put on within a week.
    Thanks for the (short!) video!
    Much love and strength,
    Thomas

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Thanks for sharing this ,Thomas! And thanks for the congrats!

    • @Truerealism747
      @Truerealism747 2 года назад

      What did the pain therapy untail

  • @Jane-pg8jv
    @Jane-pg8jv 2 года назад +2

    Thank you lovely beautiful Raelan! ❤️🙏🌞😘

  • @alexthornton9236
    @alexthornton9236 2 года назад +3

    Thanks for another great video, Raelan.
    One major change I've made recently is to scale back the exercise I was doing, in an effort to stop the cycle of boom and bust, and have more energy and less symptoms to better enjoy my daily life.
    Soon I'm going to start exercising again, but very gently.

    • @Jade-bf5we
      @Jade-bf5we 2 года назад

      @Alex Thornton Hi Alex, I hope that you are well?. It's all about gentle movement around the house whilst doing tasks such as cleaning or going up and down the stairs..as well as restorative movement such as yoga, or pilates, and gentle walking within your baseline.
      It's taken me ages to find my baseline and get the pacing right. I like you am wanting to get back to gentle exercise but it's accepting it's baby steps all the way.

    • @alexthornton9236
      @alexthornton9236 2 года назад

      @@Jade-bf5we Hi Jade,
      You're totally right. I'm starting a tai chi course soon. No more pushing myself and booming and busting.
      Best wishes.

  • @wolfgangdali1036
    @wolfgangdali1036 2 года назад +2

    Much love to you Raelen! Your effort and dedication on this channel has helped people recover both directly or as a pathway to the information that has helped them recover. Its obvious that you genuinely care about helping others, and that is the greatest gift 💙

  • @cadeheinberg3047
    @cadeheinberg3047 2 года назад +2

    Thank you once again Raelan! I have been sharing your videos on the subreddit I made called “LongHaulersRecovery”. Theres over 1700 members you are reaching lots of people in need!

  • @majahorvat7294
    @majahorvat7294 2 года назад +1

    Thank you Realan, getting back your health is amazing. i am so happy for you. It seems like a complicated puzzle.

  • @patriciarenou6914
    @patriciarenou6914 2 года назад +2

    Thank you for this info and encouragement to restart a programme like this.. From South Africa.. Abd 30 years of struggle

  • @Jade-bf5we
    @Jade-bf5we 2 года назад +2

    Love this Raelan. Recovery is in essence not as complicated as some people think. . Deep breaths, restorative movement such as yoga or pilates. Yoga nidra meditations and short daily meditations as well as active brain rest. Getting a good sleep routine and yes eating as healthy as you can. I'm still taking active daily rest each day on top of doing all the above, and it's really helping. But it's accepting it's baby steps all the way.

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Very well said and so glad to hear this!

    • @lynb87
      @lynb87 10 месяцев назад

      Completely agree. I'm not there yet but all that is helping.

  • @sublimestudi000
    @sublimestudi000 2 года назад +1

    thanks for taking time to "re-do" this video

  • @deanej
    @deanej Год назад

    I’m so happy to hear you are feeling so well! When I hear your story, I get a little confused by what exactly is different from your initial healing journey and the one that you do now. They both seem to be similar. Besides not taking so many supplements, what would you say the main difference is between your pre healing and current healing ‘protocol’. Thank you!!

  • @barbarada6308
    @barbarada6308 2 года назад +1

    Hi Raelan. Thanks for the update. My onset was very similar to yours. I have been ill for 23 years now and for the past 2 years housebound. I find it very interesting that the graded exercise helped you because the only time I have had partial recoveries was when I engaged in GET or did some substitute as in moving house. I have followed the advice of hundreds and done extensive meditation, relaxation, learning to try and relax but my body just doesn't buy it. It has been a steady decline and the more I rest, meditate, etc. the worse I get. But, it's Catch 22 as I have severe PEM. However, I seem to be getting a consitent message that I just have to somehow get on with my life and I am going to give the GET another try, beginning with 30 seconds of walking every other day. Bless you, Raelan, and thanks for all the great work you do.

    • @RaelanAgle
      @RaelanAgle  2 года назад

      ❤️ ❤️ ❤️

    • @DarkoFitCoach
      @DarkoFitCoach Год назад

      How u doing now barbara

    • @barbarada6308
      @barbarada6308 Год назад

      @@DarkoFitCoach the same

    • @OcelotDAD
      @OcelotDAD Год назад +1

      Good for you. There is no alternative. Nobody has ever healed from just waiting for CFS to go away. You have to do something.

    • @joclairemitchell9591
      @joclairemitchell9591 Год назад +1

      @@OcelotDADnot true. I did. I paired back my life. I had no “strategy” or mindset help. I was just lucky.

  • @jackienaiditch7965
    @jackienaiditch7965 2 года назад +9

    I don't know, Raelan. I'm glad that you recovered from ME/CFS. As they say, I wouldn't wish this on my worst enemy. I've had this illness for over 20 years. In some ways, I was lucky. When the first two doctors I saw told me it was all in my head, I immediately went to UCLA and was diagnosed. This happened with 3 months of onset of symptoms. Which, by the way, happened suddenly, after a flu (as with you). Then I was lucky enough to find a nutritionist who specialized in ME/CFS. I was having digestive issues and food sensitivities. She put me on an elimination diet followed by a rotation diet, along with digestive enzymes. That pretty much 100% took care of those issues. I've also used mindfulness meditation to deal with stress, and have tried many other therapies, including acupuncture, saline and gamma globulin infusions, and B12 injections. On and on. I've always tried to remain open to new ideas because mainstream medicine has totally failed our community. So where am I now? Still hugely debilitated. I have to use a wheelchair because I can walk about 2 minutes at the most. I would not attempt any kind of graded exercise program. Almost any prolonged movement results in a crash. Even doing mild yoga made me ill. The fatigue and PEM are unrelenting, as is the insomnia. A whole lot of us are in this situation. I know you offer these videos and your channel as a beacon of hope. But, frankly, it can seem like a kind of rebuke for failing to get better. This is a very serious multisystemic illness. Some people do just get better within the first few years, even without doing anything. I have met such people in my life. But for others, like me? Basically, we're left with trying to get the most out of our lives, and developing an attitude of acceptance. I hope that, eventually, the scientific minds that were able to develop the vaccines for Covid, will be able to help us as well. I'm thinking of Ron Davis, whose son, Whitney, is so severely ill with ME. Other than that, I'll just do the best I can.

    • @Mieke256
      @Mieke256 2 года назад +2

      Hi Jackie, I know I’m just a stranger on the internet, I hope you don’t mind me replying to you. I’ve been dealing with this for over a year. I’m getting only just a tiny glimpse of what you must be feeling after 20 years. I’ve been watching these videos on and off. Sometimes they give me hope when I want to give up and sometimes I get resentful. That’s my cue to stop watching. If it doesn’t make me feel good and it isn’t necessary to live my life, then there is no need to spend energy on it.
      All I can send you is love. I truly hope for you that you find peace and happiness in your life, with the things that matter to you. 💕

    • @jackienaiditch7965
      @jackienaiditch7965 2 года назад +1

      @@Mieke256 How very kind of you to respond to my post! If I'm understanding you, you've had ME for just over a year? If that's true, there's absolutely every chance that you'll improve. I hope you don't mind my unasked-for advice here. I wish someone had told me the following when I first got ill: to maximize your chance of improving, rest, rest, and then rest some more. Don't try to push beyond your energy envelope, or you can make your illness worse. In fact, some researchers believe that the less you crash, the better your chances for recovery. Pace yourself. Rest and pacing are the very low-tech ways that can greatly help. And, of course, some of the things Raelan says can be very helpful. Experimenting with different diets can help. When I first got ill, protein was hugely beneficial. Now, though, I'm on a mostly plant-based diet. Finding a way to de-stress is critical, because this disease will beat you down unless you find a way to cope. I used mindfulness meditation, but whatever helps you is great. I've found that getting out in nature is good for the soul, though I'd stop short at hugging a tree...And here's one huge warning, regarding Raelan's idea of what amounts to graded exercise. (And I think she'd agree with me here.) Be very very careful about exercising, because you can exercise yourself right into a crash and severe illness. That's what happened to me, and I'm convinced it's largely responsible for my ongoing illness all these years later. But, again, you can definitely recover from this illness.

    • @djVania08
      @djVania08 2 года назад +2

      ​@@Mieke256 So what's the message? To not watch her videos?
      I think people should hear all sorts of opinions.
      After many years of listening to people's stories and reading papers / books, I am more than 90% sure that people don't deal with the same illnesses. That's why somebody recovers, someone gets better and someone stays sick forever even with the same amount of trying.

    • @jeanettenejadi1777
      @jeanettenejadi1777 Год назад

      You tried GAPS diet or Carnivore diet? It helped me to recover fully. After almost 15 years.

    • @jackienaiditch7965
      @jackienaiditch7965 Год назад

      @@jeanettenejadi1777 I haven't had any overt digestive issues for many years. I've tried many different diets in case they could help my ME, though. (I've never heard of the diets you mention.) No diet has ever helped me. Recently, my ME has greatly improved through the use of an off-label drug, recommended by many in the ME community. This drug greatly improved the health of researcher Ron Davis's son, who has very severe ME.

  • @jocooper94
    @jocooper94 2 года назад +1

    You are an inspiration ❤️ Im doing all those things and hopefully il get there soon x

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Thank you, Jo! 💓💓💓

  • @dianeyvon
    @dianeyvon 2 года назад +3

    But where can I get a Jeffery? Lol joking aside, thank you so very much for this video and your channel . I feel there’s no one who truly understands and thinks everyone who has this is simply lazy or depressed. I feel like I am on my last try of finding an effective treatment plan. Thank you so much!

    • @dianeyvon
      @dianeyvon 2 года назад +1

      I signed up for your fb group and your skill share💗

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Looking forward to seeing you there! 💓💓💓

  • @TS-rv4hf
    @TS-rv4hf 2 года назад

    Great video! Thank you for the redo this is really nice and easy to digest x

  • @Bitachon
    @Bitachon 2 года назад +3

    *Thanks for an update*

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Thank you, Yaacov! 💓💓💓

  • @cespo77
    @cespo77 9 месяцев назад

    Hi Raelen, I have a question. When you were diagnosed with Lyme and took treatment, I know you stopped it, but what made you think it wasn't Lyme for sure and were you worried it may get worse without treatment?

  • @janicebeels1025
    @janicebeels1025 2 года назад +1

    Thank you for sharing your story of recovery, it does give some hope. I am curious about your skill share course, from what I can see you have to give your credit card information in order to watch the 30 day free course. I am a little confused or am I not reading it correctly. Thank you!

    • @RaelanAgle
      @RaelanAgle  2 года назад

      You do but you will not be charged for the free trial (or for anything else, unless you decide to keep the subscription beyond the free trial)

  • @cruzdecaramelo
    @cruzdecaramelo 2 года назад +1

    I am severe and since the begining worsening, i am in the edge of my life falls i cared myself a lot but ti didn't stop nor improve the disease, I don't have seen any recovery story of someone that was like me. how i stop this?

  • @norichannel7690
    @norichannel7690 2 года назад +3

    I love you raelan

    • @RaelanAgle
      @RaelanAgle  2 года назад +1

      I love you too! 💓💓💓

  • @nadine7532
    @nadine7532 2 года назад +1

    Hey, under what name can I find your FB group?
    Unfortunately, I have Me/CFS myself and I am thrilled with what you have achieved! You give me hope, thank you :*
    sorry, i don't speak good english

    • @RaelanAgle
      @RaelanAgle  2 года назад +1

      It’s called ME/CFS Recovery, Support, & Inspiration 😊

    • @nadine7532
      @nadine7532 2 года назад

      @@RaelanAgle thank you! :)

  • @MusicMatters_SC
    @MusicMatters_SC 2 года назад +1

    Great video!

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Glad you enjoyed it, Steve! 💓💓💓

  • @lorisudholz8281
    @lorisudholz8281 2 года назад

    Great video as always, . Just wondering if you know much about the effect the pill has on getting well.

    • @RaelanAgle
      @RaelanAgle  2 года назад

      Unfortunately I haven't read or heard anything about the pill specifically related to ME/CFS recovery

  • @alexandrecouture2462
    @alexandrecouture2462 2 года назад +1

    Thank you!

  • @merrynj
    @merrynj 2 года назад +2

    When you refer to restricting caffeine do you include sources like green tea and matcha?
    PS thanks for the video. Glad to hear your point about supplements. Marketers would have you believe you need thousands of them when all you need is a good diet!

    • @leahcalabro2787
      @leahcalabro2787 2 года назад

      According to an integrative Doctor in my cfs program, if you can have some caffeine, have it in the morning as it will affect your sleep having it in the afternoon.
      I miss my English Breakfast but have found an alternative decaf. I even found a green rooibos tea.
      Just remember caffeine is fake energy.

    • @RaelanAgle
      @RaelanAgle  2 года назад

      While I was actively working on recovery i cut out all sources of caffeine (green tea, etc.) Not sure if this is necessary but it seemed to help me :)

  • @AGKassem
    @AGKassem 2 года назад +1

    Rachel you are such a superstar! Thanks again for yet another amazing video.
    Can I just ask you, during your recovery, how long did you meditate for? ie: how many minutes at a time? Was this mindfulness meditation?
    Thanks a million!
    Ahmad

    • @TS-rv4hf
      @TS-rv4hf 2 года назад +1

      In my recovery I did twice a day for 20 minutes (Am and PM) and if you are new to meditations I'd recommend a guided meditation.

    • @AGKassem
      @AGKassem 2 года назад

      @@TS-rv4hf Thanks for your reply! Did you make a full recovery?

    • @TS-rv4hf
      @TS-rv4hf 2 года назад

      @@AGKassem Yes I did, but I had Long Covid not strictly ME/CFS. I was bedbound for 6 months, but slowly got out of it.

  • @larryc1964
    @larryc1964 6 месяцев назад

    Raegan, do you think CFS could possibly be TMS/PDP that Dan Buglio talks about?

    • @larryc1964
      @larryc1964 6 месяцев назад

      I thought so too Realan

  • @justjess1111
    @justjess1111 2 года назад

    How important do you believe getting a diagnosis is? For instance for time off of work or getting treatments you might not be able to do on your own.

  • @jeanettenejadi1777
    @jeanettenejadi1777 Год назад +1

    ❤️

  • @ww8535
    @ww8535 2 года назад

    How much time did you spend each day resting/doing nothing?

  • @dommccaffry3802
    @dommccaffry3802 2 года назад +1

    not much morning sun here in uk !!

    • @iPostiPodiEatiYuri
      @iPostiPodiEatiYuri 2 года назад

      lol

    • @Laura_B__
      @Laura_B__ 2 года назад +2

      I've heard that even when it's cloudy, your body still registers the natural sunlight, it's still good for you.

    • @TS-rv4hf
      @TS-rv4hf 2 года назад +1

      I force myself outside every morning atm in the UK and I (sounds saucier than it is) sunbathe topless. Sometimes its a bit cloudy, sometimes it is cold, but get myself outside in the morning as much as possible and it is making a difference. Im outside right now and I just use the scatter approach with our awful British weather. I find from 6:30-8:30 AM there is often sun, even if the day is a bit shit.

    • @loobylouboti
      @loobylouboti 2 года назад +1

      I'm in Newcastle, so yeah not much sun. Lol! But since the spring, I've got out and sat on my bench at the front door anyway (even if the sun is out it's on the other side of my flat in the AM anyway.) Just so I can get the *light* in my eyes. I make sure I look up at the sky as much as possible with my eyes wide. 5-10 mins before I scarper in when it's cold. It is DEFINITELY helping (as well as all the rest I do to help my sleep, Inc taking melatonin at night.)
      But yeah, doesn't have to be sun light to help, just light will help too!

  • @bridgetanne8242
    @bridgetanne8242 2 года назад

    I thought I was better but now I’m sick again. I’m so discouraged

    • @RaelanAgle
      @RaelanAgle  2 года назад

      I'm so sorry to hear about all of your health challenges, I hope you find your fastest path out of this ❤️

  • @prathamrballal1229
    @prathamrballal1229 2 года назад

    Did u ever experienced heart palpatation maigraine dizzy while standing

  • @jackiegroden416
    @jackiegroden416 2 года назад

    Can you explain how the skill share works?

    • @RaelanAgle
      @RaelanAgle  2 года назад +1

      Hi Jackie, Skillshare is a subscription program where you pay a monthly fee and get access to all of their courses (including mine). With the link you get a 30 day free trial with no obligation to ever pay or join long term.

  • @GRUBB_MUDD_2
    @GRUBB_MUDD_2 2 года назад +1

    *I USED TO BE ADDICTED TO FENTANYL, I just started a youtube channel about addiction and NOT GIVING UP* don't give up

  • @phoebeclarke3427
    @phoebeclarke3427 2 года назад

    How,how do I drag my brain dead body out of bed every morning to Do DO DO.?How do I get the !!??! to move,how can I really motivate , TO. DO? LOL.

    • @saintejeannedarc9460
      @saintejeannedarc9460 Год назад

      I know. It's such an exhausting illness, but we have to do this incredibly long list of extra things, and somehow find the energy and motivation for all that, when we're exhausted and can't think straight to begin w/. Quite the conundrum.

  • @alicethomy-thomas6429
    @alicethomy-thomas6429 2 года назад +1