Thursday, September 29, 2016

Late at night

It's late at night here... 2:10 to be exact.
And I'm so sleepy yet I can't sleep now. I have so many thoughts spinning around in my head.

This is a long post...mainly about my EDS. So if you hate reading shit like this, I suggest you stop now and scroll down haha

So....where to start?

I feel really great! Despite spending 8 hours at the ER. 😥 Gosh, those were some long and boring hours. But my man was next to me all the time. Doing his best to entertain me haha

We went home after 8 hours, none the wiser. (Is that how the saying goes?) Anyway. It would seem that I've just taken the first step on a very long road.

I joined a group a while back...a group for people with EDS. I usually don't like to talk to people about my EDS. Cause I'm scared that it'll make it more "real" (does that sound crazy ?) and I dont like selfpity, so I worry that I'll get stuck in my thoughts or something... (it's hard to explain)
I also somewhat dislike discussing it with others that claim to have EDS...cause I've  unfortunately come across some fakers.  And the fakers makes me feel horrible. (They can make me so sad and angry)  It's like a slap in the face when you meet one of those. Or maybe its just me feeling that way....?

But it's horrible meeting a certain someone that I'm acquainted with, and listen to her "stories".  All she does is lay around all day. Doing everything she can to not have to take care of her little kid.  It's a long story...But I hate people that lies. Especially to lie about a desease that ruins a lot in my life. (And trust me, I know everyone's eds is different. But I can also see a faker when I may one)

And I'm the exact opposite. She said she's exhausted while knowing I just came home from a 27 h shift. She had been alone with her 3 y/o kid for half and hour watching a movie...'s a long and stupid story.
And she made me feel uncomfortable to talk to others about EDS cause I could tell she had no idea what kind of pain it was. Have you ever met someone like that? Who so badly wants a disease to "brag" about to get pity? If really does feel like a slap in the face.
At the same time I met another lady with EDS. Completely different from the one above. I knew immediately from what she told me, how she added and posed that she had really suffered from EDS. She's been the only one I was so what open with..even though we never meet often.
Fuck I keep getting sidetracked -_-

But I reached out to this group last night, and I got such a huge response. So many caring people out there in the world. And these people gave me ideas, links to check out etc, and their support and care. And it meant the world to me.
They're all so sweet. ❤
I've learned so much today and it's so interesting.

I'm going to sit down tomorrow and write some of the stuff down and mention them to my doctor.  Suddenly the world doesn't seem so "locked" anymore for me. I feel like I've opened a door.

But the whole point of this post was to say that I am so damn grateful for all these people. All of them stood by me for over 8 hours all over the world.

Showing their support. Sharing their stories and ideas. And I think it's amazing. They made me think that I can be a better person :) I wanna show my support to people too.

I hope this doesn't come out as offensive, but it feels good to finally have spoken to people that go through the same things I do. People that share my pain. That understands my feelings.
They made me feel like I'm not alone in the world anymore. I am not the only one in this kind of insane pain..

Cause there's been a small void in my heart, despite all the care and support from my family. A small void of loneliness, thinking that no one understands what it's like... no one understands the pain I go through by just getting out of bed.
And today that void was filled. Does it sound silly?

I never ask for help...
But I am SO glad that I dared to write a post and ask for help this time. Joining that group was one of the best things I've ever done.

So thank you all. ❤ You guys are amazing.

And thank you Frost, for always doing your best for me. For always thinking of me and put daughter. And for always trying to make life a little better for me.  You're the love of my life. So let's get married soon ok? 😃

Well I think I got a lot of thoughts out of my head now. Enough to sleep anyway. Freya is laying between my legs like some kind of lapdog haha snoring and sucking on her thumb. light in the dark.
If you only knew how loved you are. Silly baby ♡♡♡


  1. We shall get married soooon! Like soon soon!
    I will always do all I can for you Koala Jo. You guys are my entire world - Hearty Heart

  2. it's great that you've found people that can truly understand the pain you're in and that can really help you with those matters that others whom don't suffer can't. Good for you to finally reach out for help and accepting it. It was a huge step, and you took it!

    It can only get better from now! <3


Leave a comment here, why don't ya?