thank youu every1 for yourr support and respect with these!! we are half way through the chapters. I have a new song coming out on Thursday which includes moments from all of these chapters, it wouldd mean a lot if you can pre-order on iTunes or bandcamp
Ren if you ever get the chance I feel a book would sell well in your merch store! Seriously! You are incredibly interesting! And thank you so much for taking the time to do this! Ps. (edit) I have already pre ordered on bandcamp my friend 😉
I believe that the worst part of this whole story is not having an enemy to fight against... You're left alone with 'What the hell is wrong with me?' echoing in your head, to the point of worrying and feeling guilty for shattering the hopes and expectations of those around you (family and friends), when in reality it's YOU who is falling apart... You can have thousands of symptoms, but without a diagnosis, the doubt that it's all in your head persists, and it's possibly more dangerous than the illness itself.
That's just my life in the last 15 years. I can only be grateful for having a strong mind and having always refused the psychotropic drugs that some doctors wanted to prescribe to me.. they would only have given me the final blow into the void. Thanks Ren for your wonderful music, empathy and contribution! Love from Italy!
My gosh Ren, I have Lyme and I'm in Australia where the government doesn't believe it exists. I sent my blood overseas for diagnosis and am being treated by an Australian Herbalist. I am so grateful I somehow stumbled across your work. Thank you from the bottom of my broken heart. 💛🌻
That's really tough, sorry to hear that! I was surprised that you said the Australian government didn't acknowledge Lyme disease so I looked it up and found a gov website. They did in fact recognize it as a disease that exists in the world but claim it is also not found in that country unless brought in from someone who got it elsewhere. I find that very hard to believe and also found it hard to believe that they don't list Canada among the countries it is known to be in, because it most certainly is.
It's not that they don't believe Lyme disease exists, they just don't believe its contactable from Australian ticks. They seem to have based that on not finding the bacterium responsible in any ticks here in Australia. Not saying I agree with them because saying that none can have it if a few don't is a bit wierd, but that's their story and they're sticking to it I guess, lol
Ren has definitely touched many hearts including my own. I am sorry that you seem to have been ignored by the medical establishment here in Australia. The accepted knowledge being that no ticks can carry the bacterium seems to be the norm. At least that is what I was taught way back when studying microbiology. The fact that very few seem to be capable of thinking it's a possibility is galling. I hope your treatment is going well.
They say chronic Lyme doesn't exist here in a America also. I went to the ER with a Lyme rash and symptoms and they blew me off saying my age was too young to be sick. Here I am 8 years later worse and no one wants to help nor understand the stuff I deal with daily. I feel worse than a 90 yr old man.
Can you imagine a record company allowing anyone to be this candid and raw? Ren’s story is not unique, though industries have brainwashed the masses, and themselves, into believing that only perfection sells. Perfection is an illusion. Reality saves.
This was a whirlwind. Had me laughing in the first half. Empathizing with the panic attacks in the second half. Fortunately I've only had them a handful of times in my life, but I know very well how they feel. 💛
Ren...do you know what would be nice? If you put all these chapters together and send them to all the doctors that were involved in misdiagnosing you or making you feel like a hypochondriac for all those years, if only to educate and maybe prevent the same happening to others. ❤
These doctors aren't reading Ren's story - they have so much important work to do - their time is too valuable. They all have a trash can under their desk and that's where these readings end up straight away! Sad - but true!
Yes - he and my daughter are just a few days apart for birthdays - just an aching heart hearing Ren talk about what he has had to live with all these years ❤️
Gifted storytellers, minstrels and bards have an almost shamanic power. Their truth-telling and ability to take their listeners along with them on heroic quests through light and dark realms has great healing power. That said, you are one of the best storytellers I've ever heard!
I empathize so much with the inability to fully articulate exactly what is going on. most days I felt nothing at all, like I stopped being human and became a flesh automata, carrying out a prebuilt set of instructions for no particular reason at all, mimicking human emotions so that I didn't cause a fuss for other people. when most people say they are depressed they mean sad but I wished I could feel sad.
Ren. Please, PLEASE don't stop talking about MEcfs. It's people like you who can actually get the rest of us some attention so we stop dying en masse. Much love, Ren!
He will likely always talk about it, but I wouldn’t ask or expect him to…. He said in his first video, only in more words, that he doesn’t want to be the poster boy for it, doesn’t want to be the answer for it, etc. I have a chronic illness, and you sound like you do too? I know personally I don’t want to have to, be expected to, or be associated with my illness constantly. Throughout my life. I want a break from it in the verbal world, even though I will never be rid of the condition itself. Does that make sense?
@@brionyhall4250 So, no one is asking him to be a poster-boy -and it makes sense why he wouldn't want to be, but there's a big difference between being a poster-boy and advocating for a cause. Chronic illness is horrible (and yes - I have several), but MEcfs is on another level. According to the NIH, it has a worse quality of life than untreated AIDS, MS, all cancers except a subtype of skin cancer, depression, COPD, stroke, heart attack, etc. Depending on the country, suicide is the 2nd or 3rd leading cause of death because it's so unbearable. Its nickname is the "living death." If you understood ME, you'd be agreeing with me. ETA: Plus, the ME community aleady has a poster-boy. If you'd like to learn about him, his name is Whitney Dafoe, and his father is one of the handful of scientists around the world who's doing research on the condition.
@@brionyhall4250So, there's a big difference between advocating and becoming a poster-boy. I don't think anyone would want him to be a poster-boy, as that would stifle his creativity. And yes, I have several chronic illnesses - but ME is a whole other level. NIH says it has a worse quality of life than *untreated* AIDS, cancer, MS, depression, COPD, stroke, heart disease, and pretty much every other disease in existence. Suicide is the 2nd or 3rd leading cause of death, depending on the country. It's got the lowest level of funding to disease burden in the world. It gets less research money than make pattern baldness - and a significant portion of sufferers are left to die by family because uneducated doctors still insist its psychosomatic. Even Ren said in a previous entry that "he has a responsibility" as one of the more high-functioning sufferers to bring attention to the issue. He's in a position to not just affect, but to save millions of lives.
I love what he already does, as he has the kit, thanks to the UK nhs I think that's enough. Try saying thank you and you altruistic all they do as a team ❤❤❤❤ They educate with **EVERY** post, video, etc etc, etc. that they do ❤❤❤❤ while being very ill 😢 of her was still under the NHS today, he would be left with nothing. England&Wales are in a very sorry state of affairs. You do realise that England voting to leave the EU has had a lot to do with this! Ask because you thought a blonde white muppet, with a few hands operating that muppet has got its into this place... right????? He is born in Wales, and if you haven't been there, you can't possibly understand the beauty yet poverty, unless you are rich or was a father getting eu grants. I lived there for 3 years in 1970s I went to primary school and had to learn Welsh and English. Then Germany for 3 years so had to learn German French and English for 3 years and so on 😆 My English is bad because I'm on my phone and can't see what I'm typing just hope it's right 😅 Stay safe and keep educating people your way. People will listen... I just did 😊
"Hold On" is one of my favorite songs. I was diagnosed with Celiac disease twenty odd years ago (before gluten free was all the rage). I still deal with doubters and people not taking me seriously. I don't have an allergy to gluten, I have an autoimmune disease. Gluten wrecks havoc on my system. It turns my insides into open sores and prevents my body from absorbing the nutrients it needs to live. I was extremely sick before finally being diagnosed. Fortunately, I work hard at being careful with what goes into my body but nothing is absolute. I strongly relate to your comment regarding feeling good one day then taking three days to rest up from it afterwards (I'm paraphrasing). I've learned to just say f**k it and be good to myself and take the time I need to recover. I'm getting older and want to keep doing so. 😊 Thank you for everything. The sharing, the music, and your Angels. Love it all. 💕
Panic attack landed me in emergency for the weekend. Led to open heart surgery. Know well that feeling. Know that separate feeling in self harm as well. That was 2004. This is the first time i said it out loud...ever.
Your story is like your music: Profound words, sometimes brutally honest - sometimes peppered with your great humor. With your music there's also this cool sound, you really want to move to it and then you hear the lyrics. Damn Ren - you always get me😂🥹😂👏🥹👍😂🤝🥹🙋♀️❤️
Thank you Ren, the work you are doing here is absolutely beautiful. So so much love, we know how hard this is for you to have to do, but it is literal miracle work 🙏❤️ thank you.
It is unbelievable how much pain one single person can bear. This amount should last for multiple lives. You have reached so much wisdom already in your young age that there will be no need for an reincarnation. We all can learn so much from you. Thank you for sharing your experiences and your knowledge.
Ordered on every platform I buy music on. Thank you, as always, for bearing your soul to the world. We are so blessed that you survived, and that you’re still here to tell us your story. It’s becoming more obvious every day why God (with your bravery and tenacity) has kept you here. We needed you. We love you, Ren! ❤
So important to tell his story. As a person who has lived with a chronic illness that hasn't been diagnosed, knowing that awareness is being spread is comforting . Throughout the years i have taken up , and given up the fight many times . I mostly live in silence. Except for the moments when i just can't physically abide . Those are the moments when I am emotionally overwhelmed. To be honest, because I am 65 years old I believe that i will pass never having discovered what has happened to me . Thank you Ren ❤
When your “Sick Boi” album hit No. #1 in the UK charts and the video that showed you crying for joy…I now really really feel the validation you seek. The disease that brought you misery is mostly memory now. Ren, continue to make music.
God love you Ren and love that you find humour in the darkest moments.A Fellow Brit who makes me proud to be British 🇬🇧. Ren you are moving mountains and opening hearts 🙏🙏❤️💙🇬🇧
When someone dear to me experienced a medical blow, I told him I trusted he would "cope or conquer". He later told me those words gave him heart and became his mantra. It's through your words and everything involved with them that you're catalyzing needed healings in all of us, Ren, including spiritual ones. It's a communal POWER.
I’d like to send your mum a hug, I know as a mum having to watch your child suffer in pain and not being able to take it away. But you keep moving forward. I know she’s proud of you because you’re changing lives.
Imala sam napade panike nakon dvije smrti u obitelji, pila sam Normabel(Diazepam) a onda sa, čula tvoju pjesmu Diazepam i odbacila sam ga .Već godinu i pol ne uzimam ništa,samo pratim tvoju glazbi u sve što uz nju ide, Hvala ti Ren,na predivnoj glazbi.I ovome što tebe pati.Žao mi je ali imaš ti snage da se boriš.Valjda će i tebi jednom biti bolje.
I had never understood self-harm until one time when i had been going through a prolonged traumatic period in my life and, unable to smash my head theough a glass door in frustration, I smashed a wine glass over my head, and the blood quickly began to pour down my face and at last I felt a release of some of the internal pressure and a visual representation of all that hidden pain within that words and tears seemed to fail to adequately express
Thank you for telling your story. The story too many of us have lived invisibly for too long. "Thank you" isn't enough, either for your music or your advocacy, but it's all I have left to give. ❤
Your humour and hope in the face of all this, shines through. Panic attacks have plagued me, on and off, for many years and your description is spot on. Please take care and thank you for being yourself and being honest. We love you, Ren.
Speaking of mitochondria and the learned people of the world, I find it amazing that it was only quite recently that scientists realized there were distinct lipid-associated mitochondria, with their own important functions. I guess previously, scientists had just assumed it was fine to discard the fat from their samples as an initial processing step. And as another example, the study of the microbiome has neglected fungal species, not because they’re not potentially important, but simply because it wasn’t until recently that scientists developed the tools to study them effectively. Couple those improvements with advances in microscopic imaging techniques, and I really hope the people of the future don’t have to go through all Ren went through to get a proper diagnosis and treatments.
my heart dropped when you said you got the piece of glass from the tv. i'm glad that, at least from my perspective, you're in a better world than you were in then- though i wish it was a better world, still. best of worlds to you, ren.
I once opened my arm up with a piece of glass from a fishtank after an explosive episode. I felt that alot. I am on that many tablets and have this disrealisation
I’ve been living with a brain infection (reactivated viruses) for four years now and your description of the shard of glass took my breath away because that’s exactly how I’ve been feeling for the last few months. I never imagined someone else could feel like this. I’m so sorry for what you’ve had to go through man. You’re so strong.
@@alexxswanson1766thank you so much mate, this is so kind of you to say. And you’re right - since writing this comment it’s been much better. I wish you all the best
Through your words and music I feel like I can understand the struggles my mum has gone through for 40 years even just a little bit.. and hopefully support her better. thank you for sharing with us, must be difficult to give a piece of yourself away. Just know that you are giving us some pieces extra
As with every single other person on this post , every single person who follows you, and more so those lucky enough to know you personally, I wish I could take it away from you, even for a day , you’ve already in the 4 short years I’ve followed you and your music, saved me from some dark times and places. Literally, some of your music found me with pills in one hand and drink in the other … but your words stayed my hand and broke into my heart forever xx Thank you … ❤
There were many times that hurting myself was the only way to feel connected with my body. I can absolutely relate to that between derealization and simply feeling like I needed something that I could control. I’m on the edge of medical burnout again as I continue to be told that doctors don’t have anything to say or guidance to give. I finally have someone willing to order imaging for my spine and hoping that will be the key to better quality of life…but I’m also cautiously approaching it because it is devastating when something that gave hope doesn’t help. Thank you for sharing and being vulnerable…the relatability and not being alone means so much as you know. ❤
I appreciate you coming out of your shell, to deeply explain what many individuals will never quite grasp. You don’t let anything harsh your mellow and articulate topics extremely well. For those who suffer. Never Give Up. The music you create, resonates throughout the world. Music Heals, Thank you 🙏🏻 @RenmakesStuff ❤
From someone else who (in a very different way) has also gone through inordinate amounts of suffering in their life, I see you. I see you and I see how you just keep going, no matter what. I'm so proud of you. Keep at it. Trust your path. It will bring you exactly where you are meant to go. Eventually, we find the key. And when we do, we start shedding that suffering like an old skin. I see you. I see where you are heading. And it's more beautiful than anything you could ever imagine for yourself ❤ PS: keep trusting the synchronicities 😉
its crazy to me that you teach yourself the knowledge of a half doctor examina. And first and foremost that you even had to do that as the only way out of that situation. You are a very strong person and we are very lucky that you are still with us. Much love ❤
You sure know how to make sure we’ll be there for the next chapters. Renny boy you’re such a tease 🤣 Seriously though, thank you for sharing all this ❤️🐰🕳️
Thank you Ren for trusting us with your story. Much respect to you. You have been through so much and yet kept on going. Your story is helping so many I’m sure. Your music has helped me so much when my heart was shattered when my son was taken from me. And also when I feel my body has decided to rebel against me being 49 and feeling 90 most days. Panic attacks sent me to hospital thinking it was a heart attack also. I suffer them daily and it’s horrible. I isolate most of my days. Sending you love. ❤️
Used to have panic attacks myself when i was around 17 up until my lates 20s . The first time i had 1 i thought i was going to die . I could feel it inside building up and up it felt like my heart was going to explode or just stop and massive overwhelming feeling of feer for no reason at all i was just laid in bed ,it came out of nowhere. Nothing to what ren went through and is sill going through But it was scary none the less
Ren. I live in NY and went to the doctor who assaulted you. I am too scared to type his name, but it begins with E. He was sexually inappropriate with many patients. Including me. I had no idea at the time because I was too young and naive to know any better. I never told a soul. I was simply following the world renowned doctor's instructions. I thought it odd that a doctor would have to examine my vagina when none of my symptoms for CFIDS/ME were vaginal. There was no one else in the room. His two female nurses/assistants were not in the room. I was alone and at the mercy of the expert and felt I had to listen to him. I read this year online that he was sued by a formed employee for sexual assault. It does not shock me to now hear he was sexually inappropriate with other patients. There was NO reason for him to do that to you as part of a GI exam. None. I am so sorry. Sadly, I stayed under his care for years out of desperation to get better. This was many years ago. He is no longer practicing from what I can tell. But my story sounds a lot like yours. There are many, many parallels. There is just so much I could tell you... It is crazy to sit here and listen to your story and it just sounds so much like mine. Right down to the loss of my best friend who died. Fuck, I am crying. I never told anyone what happened in that exam room. I was so grateful he diagnosed me, but in other ways, he fucked me up so much. I finally listened to my gut an stopped going to him in 2009. It is insane we have so few experts that treat these conditions. Much Love to you Ren. I am so sorry you experienced such similar tragedy.
Ren, you have a gift! Thank you for letting us into your search for answers I’m much older (66) looking for ways to help my only sister with a nasty illness but her diagnosis came quickly “ALS”. Only problem is. No cause and No cure. I’m searching too… Thank you for your gift
My son has been listening to you for years... Just recently you came across my fyp and I have been down the ren rabbit hole every since. Your story is amazing and for someone who has a chronic illness I feel seen.. thank you...❤
Coupling your story with a song written during the time is very impactful and gives more insight into how you felt when you wrote them. Love and hugs 🎸🎼🌿
I've been diagnosed with Narcolepsy since 2017 even though I've never had a sleep attack or cataplexy. But I'm so tired I can fall asleep almost instantly. It's worse when I exercise/ activity😊 but stimulation keeps me going, I most definitely have never fallen asleep talking with someone or in the flip side eating quietly by myself cause I'm still doing something. I can't even listen to audiobooks to go to sleep, they are too exciting. I had a recent sleep study to get updated info (and because I moved to a new state) as I've felt horrible for the last year, getting catastrophic after another case of covid January 2024. For the last 3 months I felt like I couldn't leave my bed without my heart racing and getting dizzy. Anyway I learned that Narcolepsy is supposed to be at its peak between ages 18-25. I was 23 at first diagnosis. This recent study score I went from 5 minutes to 50 seconds! I asked the specialist why it was so drastically different when it's not supposed to get worse? I'm 30 now and I've been managing my sleep hygiene and meds with consistency like I can't do anywhere else in my life and it's prob because my life literally requires it to function. He brushed my question aside and focused more on the fact I take Adderall and he wanted to be sure I didn't have an addictive personality. He told me I would have to have my primary continue my rx cause he will not prescribe it, even though I have tried Ritalin, modafinil, armodafinil, nuvigil, provigil, and wakix with little success or severe side effects. Your story has so much over lap that I looked up CFS and omg 😲 it even touches on symptoms i thought were separate like hairloss, sore throat, bone pain/ muscle twitching, and getting dizzy when I stand no matter how slowly and feeling so much better laying down. And I am a very active person. I still currently serve in the military and have since 2013 although I'm under medical review for the umpteenth time. I really think I've been misdiagnosed for 8 years 🤯 thinking the other stuff might be hormonal or arthritis or gluten intolerant... if I do have CFS,i couldn't imagine doing it without stimulants. It's the only thing that pushes the brain fog to low laying clouds and increase my mood which pushes that derealization to a hole I can actually climb out of... but I too feel like they always look at me like a hypochondriac cause I am constantly scowering the internet to find answers. My mind is just 🤯🤯🤯 and im afraid to bring it up, and even though the treatment is mostly the same, the diagnosis matters to me. Narcolepsy has horrible stigma I would love to shake off and it doesn't touch the fatigue I actually feel... fatigue and tired are very different things. Your story is helping, and your music has been a great companion.
Unfortunately I know exactly what those indescribable things feel like. I lost my body and mind, but I continue to HOLD ON. I'm a real stubborn b!tch! Take my body and mind, but this "thing" can never take my will to fight. Love from Texas💜💜💜
Words escape me, although a multitude of feelings envelop me. Dear Ren, you have my respect, love, and support, whatever I can offer is yours. Thank you for your magical talent and inspiring acts of education and support you offer to us all. ♥️ Sending you strength, blessings, and vibrant Health, Lizzie
Thank you for doing this ❤. It means a lot and I can imagine it must be difficult to be this open to the world. I appreciate the way you describe self-harm. I (used to) have issues with this and also with two autoimmune diseases (the self-harm and the diseases aren't really related to each other like they were, in a way, with you). Again; thank you for being this open en sharing in your own words, 💞.
Derealization is hard to describe to someone who's never experienced it...feel disconnected from yourself..souls vacuumed out of your body.. everything has an unusual undertone nothing feels safe... Adrenaline gives you a brief moment of respite...resumed the life of the undead.❤
You described self-harm so perfectly. Too many people thought it meant that I was suicidal. I was suicidal but the self-harm kept me here. It helped me to gain a moment of control that would keep me here one moment more. Just one moment more. Then one moment turned into 2 moments and then 2 moments turned into a day, a week, a week turned into a year. The pain that wanted me to leave this earthy coil is almost, ALMOST gone. I don't think the pain of being trapped inside of a mind that wanted to kill me will ever go away but now I am a 60 year old trans man living with my two wives in the life I've always wanted but never believed I could ever have. They have saved my life more times than I can count and we will always be connected throughout eternity. They have helped me become the man that I am today. I finally feel at home in my body. I finally feel at home in my spirit. This song gave me goosebumps and has connected with me in a way I've never felt before. Music became my solace from my personal world that caused had caused me so much mental anguish almost since birth. I would cry out in my pain but no one could hear me. Or if they could hear me, I couldn't hear them. My early life was marked with a level of violence that no child should have to experience. I was betrayed by the men who raised me. I was betrayed by the woman who birthed me and I felt so alone for so many years. It was 29 years ago today when an angel walked into my life and welcomed me in from the cold. Happy Anniversary, Bebe. I'm not in the best of health mentally but this song kept me here for one moment more. Just one moment which will turn into two which will turn into a day, a week, another year. Thank you, Ren.
I wish i could find the words to say what i want to, but I'm unable to. It's a complex feeling. I lack the strength and heart you do. I'm crawling, hopefully to a cure. I've spent my whole life (even as a personal trainer out of high school) with a body that did not produce testosterone. It went undiagnosed until i told my doctor i was about to start taking T, to see if it helped. He ran the test. At 28, my leveled after being on it for half a year were 134. At that age, a healthy person would have up to 800+. There are many other ailments i possess, but it is this testosterone that i feel is the key to truly start healing. If only my body would take to it. Right now the little i get my body turns to estrogen, but my doctor is adamant we can find improvement, even if there isn't a perfection (a boy who went through puberty without testosterone has lots of fails that can't exactly be fixed, even when levels are restored.) But your story, while immediately fills me with some shame for being so weak, it also gives me hope, and helps motivate me to give it my all, even when my all for that day is just surviving until i next sleep.
I have severe panic disorder, anxiety, C-PTSD and Derealization is the worst feeling in the world. I appreciate the way you described it. It feels like your soul left your body and left you in a automated shell of a body that just barely functions by instinct only. You feel emotionally numb and panic even more worrying if you will stay this way forever. Everything around you does not feel real and even looks odd and distorted. It is like a nightmare filled with doom and gloom you cannot wake up from. Did you ever see the painting of the melted clocks by Salvador Dali? Everything around you feels so bizarre and you will do anything just to snap out of it to feel real again. I was freaking out in my therapist's office saying everything in the room did not seem real and I did not feel like I was in my own body. I told him I felt like my head was like a balloon and it was floating away from my body. He picked up a tape dispenser and ripped a piece of tape off and handed it to me. He told me that by feeling the stickiness of the tape it would make me feel real again. I rolled it up into a ball and threw it on the floor and broke down knowing that they just do not understand how to help us. I do not remember driving home that day. The only thing I remember is having to pull over on the side of the road a couple of times to throw up from being so panic stricken and sick to my stomach from these feelings. As I was throwing up, it felt like I was trying to purge my body of this illness. I felt instant relief, but it was short lived.
Thank you for sharing your story Ren! It motivates me a lot to launch my own art into the universe to see what happens, despite all the pain I’ve also felt. Thank you for inspiring others to create and share their stories! I think this is the most powerful thing an artist can do, create to help others create ❤❤❤
I have taken much from the first half of your story already. Brought me tears, laughter, intrigue & hope already 💖 Don't worry Ren even if the Dr never called... Hell always be in your...... Heart 💞😁
Sometimes, It's the little things that get us through each day to the next. These stories, remembering that I am not alone and looking for the hope, they are showing me a reason to hold on, a reason not to let go and let the darkness take what's left
That vein of humour through the pain is inspiring. I'm hanging on every word. So many times I've felt like you're talking about me. I'm sorry for the pain but love what you've become
Never loved a stranger before but your an inspiration......my 21 Yr old has a rare Epilepsy condition that took a long time to diagnosis, a life of medical uncertainly is a tough journey ❤
Love how open you are being about this!! Please continue to share your story it is helping us all even if we don’t have anything wrong. I wish you all the best man and continued good health!!
Thanks REN, you help to calm me, help me take a breathe & think Sometimes my minds just fucking racing, your songs are constant for me & I still find more that lightens me ❤
Ren this chapter feels like it's me. I've spent hours on Google, Facebook groups researching methylation mitochondria various stool tests. After years of gut pain I was told I had possibly bacteria growing in my gut. Was given some strong herbs and after 4 weeks was vomiting on them and gave me huge panic attacks. Then saw a dr who gave me metronidazole after that my gut no longer worked inability to digest foods passing out falling asleep on foods. I'm now on iv nutrition and had sepsis 7 times. I'm still searching but I don't know how to escape it. This chapter is me
7:00 "… there's no song I could write that would make you understand." I somehow doubt that, as I know people of all ages that were changed by Hi Ren in a way that made them feel less alone in their anguish; BUT I'm sure that if, as you say, you couldn't, I'm pretty confident no-one could.
ME is evil. No one else can understand how you feel. People are always telling me to go to the Dr cos they might be able to do something. They don't understand the time's you have seen a Dr and there is nothing they can do for you, so you go back to bed and carry on existing. Like you Ren music has kept me going, I don't know how I would have coped sometimes without music. Metal and rock speaks to my soul and keeps me going, it gives me something to live for.
This one was so fast paced. I couldn't really process one feeling while the next thing was already coming in. After that the first thing I was thinking was: The mere fact that you are still alive is a miracle. Thank you for holding on. ❤🩹
Absolutely it was planned..."holes in these jeans.....Hold On". The first time I have ever seen him wear a pair of ripped jeans...it set the mood for "Hold on".
You mentioned that you wanted to make a difference. You make us feel less alone, I have been lost in medical gaslighting for 15 years and I'm finally getting out. You helped me do that, I had given up, but you reminded me that I am worthy of life without pain, physically and mentally. You do more than you could ever imagine and I am absolutely sure that many therapist ect will use your insight to better see their patients! Not even catching flies here, you are moving the world to a better place. Looking forward to Thursday 😊 Also I always think of the words beautifully neuro divergent when you talk to us. Remember that always.
I really hope by writing and then talking about your journey will help you, it’s helping many others! Your words do make me chuckle at times - I love that you challenge your thinking style and through humour still manage to get the story out 😂 Dr Mike Evans has a YT video embedded in the HOPE program I am trying to follow. He says ‘The act of giving coherence and creating your own personal narrative to stressful events in a letter can be an effective way of negating the stress of those events.’
Amazing and poetic testimony. I can't even imagine how Ren is surviving this terrible journey, but sharing it in this intimate, painfully beautiful way is bound to help others. I suffered two bouts of chronic fatigue in my life, the first lasting about a year, the second several years. Rare disease specialist said that 90% of the diseases out there they don't even know exist. Prayers for everyone suffering.
