This was a really moving and eye opening read, I can't even begin to imagine how hard this has all been ESPECIALLY as a child. I'm proud of you
8 months ago
| 14
Can't imagine the pain you've gone through so far in life. I hope you'll be able to keep on pushing through! We're all here for you!
8 months ago
| 5
Understanding your pain but then in turn understanding how pain affects others is a sacrifice in of itself. However, don’t stop putting yourself first!
8 months ago
| 5
I'm so happy you're still here, Love. You have filled me and others with happiness through your streams and content, but even without streaming you are still a very important person to so many who love you deeply. I'm sorry how deeply your pain affected you. Words can't do justice to the pain that you felt and still can feel, but its really amazing to both see you talking about it and also see the progress you've made, both with your pain and your feelings towards it. You don't need me to say this I'm sure, but you're doing great and we're all so proud of you. Do what you need to do when you need to ok? We will support you no matter if you need to take breaks or longer rests or anything like that, and be safe <33
8 months ago
| 5
That's awful :'< I and many others are happy that you are still here ❤️
8 months ago (edited)
| 6
It’s nice to know you’re doing better, doggo! Things will always get better eventually, no matter what.
8 months ago
| 6
This is inspiring. Even though I'm going through a different kind of hell, l can see how you dealt with it and how strong one person can be. I'm happy for you. We all are.
8 months ago
| 3
Love, thank you so much for posting this. Really really moving. Be glad that your alive and you have an amazing community that is here for you.
8 months ago
| 3
I will admit I didn’t fully read it. But Danni you are amazing bean and show perfectly that just because you have a medical condition that makes life hard but you are still doing content and pushing forward. Keep being amazing and be yourself we all have our issues that make people unique and amazing.
8 months ago | 2
This lit a fire in me again because, while I haven't dealt with something so intense, I've dealt with plenty of medical issues of my own that have barred me from doing things and made me feel like I couldn't do anything, that I should give up, yet I just didn't, I never ended up stopping Stay strong and push on 💚 Flow like water, burn like fire, strike like lightnin
8 months ago
| 3
..wow..best thing I’ve read in awhile..keep pushing man..you’re doing good, really good, for what you’ve been through.
8 months ago
| 2
Dealing with chronic physical pain at such a young age everyday growing up and still being able to pick yourself up and keep going forward despite that is very admirable. You're an inspiration and many are caught in your orbit, witnessing both your struggles and triumphs. Glad you're still here and I hope it gets better :3
8 months ago
| 8
I don’t exactly have many words, but I do have these: I witness you. I see and support you through every second of your life even if it’s not apparent. I have your back, love, we all do, let the pain in paint become a color on our beautiful works of life
8 months ago
| 1
You are really strong, Love, and i appreciate that you still here whit us despise what you've been through. I hope things get better for you! ❤️ I've been hurt emotionally a lot of times by my own parents when i was a kid, Because i was very emotionally unstable, and i was crying for almost any reason, then, things only get worse when i started to self-discover about my sexual orientation, because i was starting to like boys aswell, but i didn't want to comment that to anyone, afraid of my homophobic family hate me forever (there was a day i hug one of my friends from school that was a boy, and my father yelled at me saying affirming that it was gay, and i should never do that again) so i had to keep those feelings for myself, feeling that something was wrong whit me, and I didn't had anyone to talk about it. I lied countless times for my psychologist about many questions they asked about how i was feeling at the moment, and I didn't want to socialize with anyone else, since i was not too insecure to be around my friends, or go anywhere whit my family, and didn't help me to realize how much i was complaining about all of that, but most of the people around me was suffering from worse things in their life than i was, so i was starting to feel bad for crying out loud because of my emotional pain, while everyone else had worse things to complain about, but they wasn't complaining about it all the time. I tried to put an end in all the pain in my life as soon as i could, but i was too afraid of doing that, and still feeling tormented in the afterlife, so i take it slow, hoping that eventually something stupid i did would be enough to end everything (but it never did) As the time past, those feelings was starting to fade, and i felt empty for a while, to the point i didn't want to leave my bed, until this thought hit my mind: "Maybe... I'm not doing it for myself, maybe I'm just living for other people's happiness, maybe I'm not the main character of my own story afterall." So after that, i start feeling more indifferent about many things around me, like none of that matter since I'm not living for myself anymore, I'm living to not disappoint other people, putting other's people's happiness and well being first instead of my own. Sometimes i still feeling like that, but I don't know, maybe if wasn't for this purpose i choose to live whit, i wouldn't even be here now to comment about it, i would be already dead, or worse. (I hope this is not too hard to read ;w;)
8 months ago
| 3
I'm so, so proud of you for getting through this Love. I'm so sorry you've had to experience this, but no matter what happens, it will always get better. <3
8 months ago
| 5
Wow, thank you for this. I probably have EDS and after decades of pain and years of pointless dr appointments, I'm about to have an actual diagnosis in a specialized hospital.
8 months ago
| 4
Regarding this - are you UK or USA based Looking for advice regarding EDS - it's ok if you can't
8 months ago | 1
Love The Dragon
The Truth about my relationship with Ehlers Danlos Syndrome.
I have felt distressed about my existence for as long as I can remember. Something just felt so heavy and painful. However, I assumed for a very long time that everyone else felt the way I did. I complained of being tired, not wanting to stand in one spot or walk very far, only to be reprimanded about being lazy by my father with the same condition. I felt so much heartbreak thinking that everyone else was going through such hard lives while feeling the same way I did. I complained of tearing back pains, and knee pains, only to be told that they were growing pains and they were normal. I laid awake at night, slowly but surely broiling to a panic over the fact that there was no comfortable position for me to lie in. No solution to the problem. I was told to take ibuprofen, and I did for quite a while, but I never noticed it helping at all. I felt shame for having what I perceived to be a privileged life, and still not being able to show up to it. My father talked to the family about emergency evacuation plans and doomsday prepping, packing go bags and describing what we'll need to walk somewhere if we need to. I silently hoped that I would die before it came to that in an emergency. I knew my body would not be able to keep up with the walking. I felt terrified, because I saw the portrayals of the human body's degradation over time, and thought "It only gets more painful from here? I'm 5 years old, is this the least pain I'm ever going to be in?" I felt like I was disintegrating slowly. Grinding away with each motion, straining every tendon towards its snap.
Screaming wasn't allowed.
Every doctor's visit was an filled with an excited hope that something would be done about how miserable my experience was. The relief and validation never came. I've literally fetishized healthcare appointments at this point because I want to feel better so bad.
When the validation never came, I started to wonder if the pain was actually real. I wondered if true comfort even existed or if everyone was just exaggerating. I decided it was best to put my head down and just take it, not bringing it up. There was no apparent cause, so any attempt to elicit help or relief was considered complaining.
Then I remember the dr's appointment where I found out I might have Ehlers Danlos. It was cloudy and rainy. The doctor explained to me that my tendons were supposed to be like rubber bands, but that mine were instead like double bubble bubble gum. I knew in that moment that I could not comprehend just what that meant for me ahead. My emotional response was muted, and I silently tucked away that added confirmation to the fear of breaking down over time. It didn't make sense to be in pain yet though, so I started wishing that something painful would happen to me so I could be taken care of. Ironically, I began to wish that I had some kind of disease that was bad enough to get people's attention. I wished that I'd get in a car accident so I could see people showing care for me at the hospital bedside. I thought that was attention seeking, so I tucked those wishes away to grow.
Around 12 years old, I became suicidal, wishing for an end to the pain. I found quickly that any self harm attempts would only cause problems between me and my parents. When I told them that I wanted to drink bleach, I was brought to the hospital. They just asked if I still felt like I was going to do it, and I realized I could only say no. First, because my heart crumbled at the thought of the pain my parents would feel at my passing, second, because I realized I was not going to get any help here.
I vowed to never make an attempt that left evidence that it was intentional again.
I started trying to hold my breath for as long as I could, hoping I could brave the maddening scream of my lungs to cross into unconsciousness. I was never successful in that.
I learned in history class that Native Americans enslaved early in Colombus' little parade would become so sad that they'd simply just lay down and die.
I tried
countless times
To turn off my body in that way.
To simply slip away from the world, having died in my sleep in an unfortunate happenstance.
I could
never truly give up.
I was chained into this life by fear of guilt of hurting those around me. And love for those around me. I felt sick at the thought of how cruel taking my own life would be.
I kept my head down as I pushed through school, my determined stride slowly staggering and failing. I saw the future of a 40 hour work week for the rest of my life as a looming tsunami ahead. A wave I could only pray I was ready for by the time it arrived. I thought, maybe once I got older I'd have greater capacity to handle those things. The pain only got worse. My joints started betraying me in new ways. My eyes drooped further and I got more tired.
It's only going to get worse until I find a cure.
At a certain point, I was unable to keep running. I laid down, and tried to withstand my pain as I rested for over a year. I cursed the powers that were for inflicting something so great upon me that I was unable to confront.
Eventually, I realized that I was lying to myself.
Despite the intensity of the pain, I could still move. I could still live, albeit slower than before. I could do something about my life through it. The opportunity was show to me, and between that and the other option I took it in a blazing fury. A supernova that refuses to collapse.
I've now developed a new relationship with pain. I see it as another color on God's pallet. One that casts the subject in a stark betrayal of their wishes for peace. One that adds an ominous and reverent glow to the undertones of their achievement. One that contrasts quite nicely with relief and love.
Every agonizing and messy attempt to reach towards the stars, and every snap and tear of my bones as they collapse to gravity, is a sensual homage to the beauty of God. My experience is a wonderful and horrifying undulation of the more abrasive flavors of existence, impossible to look away from and ignore. Impossible to escape or comprehend. The act of my existing I feel can only be described by the fantastical image of great caverns of biological and mechanical geometry. Dark and red, lit with the sparse glow of an overcast day through a window. Each piece moves in towards each other with an immensity that can't be fully captured in words. Almost like the movement appeared slow, but felt to be moving through incomprehensibly vast distances of meaning. The image of an ancient and eldritch womb keeping me in its slippery and unbearable grasp.
I know my pain is not for nothing, and it has given me immense compassion for those who have suffered. I can alchemize this into good for the world around me, and I know I'll be rewarded for doing so.
Witness me, world
8 months ago | [YT] | 192