I'm Mel, an Aussie in my mid-twenties just trying to do the best I can, with what I have, exactly where I'm at.
Here I share my experience of life with chronic illness and disability, to encourage others, and raise awareness.
Even though the doctors told me I would spend my life in bed, I'm pursuing healing, trying to be as healthy as possible, and finding ways to improve & adapt to my condition in my day-to-day life functioning in my surroundings.
I'm learning to see God's grace in hard places and heal from trauma
I have been told I have a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS). As connective tissue is everywhere in the body, EDS affects many systems in my body, some secondary conditions I also talk about are CCI & AAI, POTS, Scoliosis, MCAS, TMJ issues, MALS, and Endometriosis.
Story of my life. I'm currently looking to get my diagnosis at 34 yrs old. I spent my entire life in pain, all over body pain, nauseous, allergies, and so much more. I work myself so hard then I'm down for a day . Anxiety is high , top that off with audhd symptoms I'm just a genetic masterpiece 😊
I had posterior PRP and I just started going and I was really surprised with the difference it made. My first time I went I didn’t notice anything but the second time I went because I noticed my pain was worse and my head was heavier. I went and it turned out my atlas was out and after the adjustment my head instantly got so much lighter I was shocked and I felt my muscles in my neck start to relax.
Hi. Just watch your video. Sounds like what A spine surgeon. Told me last year. A illyaughed at me. Amd said nothing was wrong g with Y neck or back amd said I was getting old and I am having I flare from my spinal arthritis and fibromyalgia pain. A year later I have still ongoing back and neck problems. And now have a pinched nerve that I worse. Compress Gerri raw. On top of other stuff. Going to get a spinal injection in a few days.
You are doing humanity a service... I am a doctor, learning from you!!! So serve as a better doctor for my future patients. No one can thank you enough and you don't know how many lives you are saving via this.
Thank you so much for this comment and taking the time to watch this video and learn as a doctor. I really appreciate it. Some of the best doctors I've met on my journey are those who have continued their study and learnt from patients as well. So you are doing humanity a service :)
This made me feel less alone. Thank you. My cond is pretty bad and I can't seem to get the right Dr's or tests to prove what I know... that I need neurosurgery asap to avoid paralysis or stroke. Mine has other factors like compression on spinal Cord and vertebral artery. So sleeping, not only brings pain, but any position that I'm too unconscious to adjust cuts off what little blood supply is still getting to my brain. It's scary. I'm 64. Dr's are really hard to find who believe me and are willing and capable of understanding the complex conditions. If I can get bone spurs layered off and maybe enlargement of spinal and artery with fusion or widening or Stent... I think I could work on the strengthening and alignment. But the emergency is getting tests that prove and show at the wierd positions, to get repairs. I've got two kids and I need to get better. It really was nice to see you talk about what you deal with and I hope you get relief soon. There's a Dr a chiropractor, in Fort Meyers Florida, Dr hauser, who does you tubes on it. You may already know,... but he helps with prolotherapy and strengthening instability with weights ? Anyway, keep looking into it, and if surgery seems like ot could help, research and consider it. I am mostly holistic in theory, but at some point I saw that mine had gotten so bad, that surgery would be a huge relief assuming it works.
I hope you find my platforms helpful for you, my friend @ribeyerach also had all those conditions and has seen healing from them all. Some other resources to check out is @sarahjacksoncoaching and @yourgreatfulguide. Hope that helps
Thank you for doing this kind of videos ! They really help not loosing hope ! It is hard to find success and healing stories, especially with EDS. I have POTS for a year now and also discovered I am hypermobile. I'm worried I would never improve or heal because of the "official" explanation that, in the case of EDS, POTS is caused by a structural issue (stretch veins etc...) and so can't be cured 🥲
But what did these people do to heal? Any of them POTS patients? Share all you can please. There's so much out here promising healing with a huge price tag. I haven't worked since August last year and I have kids and a home and I need to get my life back. I can't afford expensive treatments and programs etc etc.
Hey :) if you have a look in the description it will have a little more information about each person and their IG handle :) There were a few with POTS I think there are many ways people can go about healing withing a budget, something I do is just research online as much as I can do from home. Nutrition, grounding, sunshine, somatic practices, trauma and emotional work etc have all made such a difference for me. I hope you're hanging in there all the best :)
It’s so nice to look at your post history and see your progress! Have you always had fairly normal range of motion in your cervical spine or did you have to train your cervical spine to get to its current range of motion? I have some spinal instability (not diagnosed as cci at this point but unsure if I also have that) from an injury and my ROM is so bad.
I’m just happy EDS made its way into one of the most popular book series of our time. Of course we all have huge variations in how this condition affects us. But any mention of it at all is a good thing.
Ugh I had almost the same experience with a neurosurgeon and there are no upper cervical experts in my area either! The way they treat patients is appalling and they should have mandatory training on this critical area of the spine.
I wanted to comment because I can tell you have healed a lot and your health has improved a lot just by this video. I remember watching your older videos, you can just tell by how you look and speak that you are getting better. I’m so glad and it gives me hope for myself im not as bad off as you were during your worst but I’m the worst I’ve ever been I’m recliner or bed bound most of the time no matter what I do it isn’t enough but your improvement gives me a lot of hope so I just wanted to let you know you gave me some hope thank you.
Thank you so much for leaving this comment, it is really encouraging to me!! It hurts my heart to hear where you are at the moment because I can relate, I hope you see healing too, don't give up hope and keep hanging in there!
-Thanks so much for sharing this! i feel like I only ever see “It’s amazing and cured me” videos so it’s nice to see a video like this. -I have severe ME/CFS and have never tried DNRS because the “don’t talk about symptoms” seems like denial and lack of radical acceptance, which seems ike it would be really harmful for my mental health? I have the exact same feelings about my medical trauma, and I feel like it would be impossible to regulate my nervous system without addressing the trauma. Other than the graded activity, what was it from the program that helped you in the beginning, especially with your sensory sensitivities? - If you could recommend something for someone who was as sick as you were as a teen, what would you recommend? -If you try Primal Trust, please share how it goes!!! :) I'm wondering if it has these same cons? From what I’ve heard about DNRS, I think it would be harmful for me, but I am interested in doing something structured to get my body into parasympathethic (I don't think I have the capacity to do a program like Primal Trust rn without getting PEM). -If you ever wanted to do a video, I’d love to hear about somatic practices and other nervous system regulation tools that you’ve found helpful!! :)
Exactly what happened to me. I didn’t do DNRS I did the lightning process. It led to a severe crash I never recovered from and severely harmed my mental health. In Harry Potter, harry calls Voldemort by its name because he isn’t scared. You must radically accept & confront the pain head on. I cannot emphasise how much this program harmed me. To anyone reading: your symptoms are valid. Toxic positivity won’t help. Gaslighting won’t help. There are people living with severe symptoms daily AND they are not in any way less than 💜💜💜 hugs to all
I am so glad you found it relatable, I hope this video encourages other people. Thanks for leaving a comment, because I wasn't sure about sharing it :)
I always found avoiding trauma in any mindbody program is a big red flag. Sarno is one of the OGs of this work and he encouraged people to journal about EVERY trauma in their life until they process it then the pain and symptoms will heal.
Yes I agree, I don't think we can process what we avoid, and infact I believe it just shows up somewhere else if we avoid it, it demands to be processed in some way
It's improved an incredible amount and improving more and more all the time, I still have a way to go though but it's the best it's been in 10 years :)
You did such an amazing job of communicating your experience. ❤ I completely agree with you about the gaps of the program. It's a great start for many people, but is not the "end all be all" for nervous system healing. I also appreciated that you said we all have different needs at different points in our journeys. The DNRS program is more of a "one size fits all" approach rather than an adaptable one. For me DNRS was the quickest progress I'd seen with my health, but I do wonder if it would have been that way if I had started it at my worst. I think the timing for me after doing 8 months of carnivore was really important (as I had already seen so much healing). I also encountered a point where I was hit with a wall of trauma and didn't know how to proceed. Thankfully I was able to incorporate outside resources to support. So I agree that trauma work is something that is a huge gap with DNRS. I'm so proud of you for sharing this, I know it must not have been easy! You've been through so much and it makes me so happy to see you continue to heal. You are glowing! ☀
Thank you so much ♥️♥️♥️ I really appreciate your encouragement and also you sharing you're experience as well. Anyone else reading or watching this feel free to share you're thoughts and experiences too!
I'm just being diagnosed with cci right now. I've been dealing with it since a nasty concussion 4 years ago, I went down a road thinking it was brain damage for so long. I'm not as worse as what you experienced but I'm really hoping I can recover well. How are you doing now? I'm hoping I can get into aerial dancing with my daughter so I hope this doesn't ruin that possibility for me
Hey, I am so sorry for what you've experienced and been through I am doing well and improving more and more everyday! hold on to hope for your future goals and dreams!
@iammellbell did you find a healthy diet to be helpful at all as well?? I've been struggling with awful sugar addiction from the depression. I also suffer with terrifying dissociation which started after the fall too, alot of moments of feeling like im not real or in a bad dream and losing my sanity. Did you ever feel this way?
The test itself isn't painful, it depends if it is painful for you to eat or drink food in general that part might be painful, but the test itself is not :)
Hope this isn’t a odd question. But what was the reason you soaked the potato chips in hot water to eat? I’m just wondering if that’s an option for myself. Is it turning it into something more digestible? 🙂
yes, that was the reason, also to help with my jaw pain. I am so sorry that you're experiencing this and I hope things improve for you as well and that you're able to find safe foods
