Hi all,

I am a Dutch newbie here, so please forgive me my spelling mistakes. I got the diagnoses hypermobility, which for me basically means that all the bones in my butt are dancing around all day. Which would be fine if they would dance together *gives them a look*, but unfortunately they won't....
Due to that I can not stand long, sit long, and lying down is also not really comfortable.
I can handle the medical side, but I don't know how to handle the emotional side of it. The idea of having to go to the same amount of years I lived with this pain, and standing on the side line of my life, not being able to participate makes me so depressed.
There are these wonderful advisors who tell you to accept it, because it makes things easier, but I can only think "Easy to say if it is not your life", and sometimes I even feel violent urges (don't worry.... I am mostly pretty harmless).
So my question is... how do I get happy again? What works for you guys? Do you have some do and don'ts? I know it is a silly question, but I really need some help here.

Hi, Eclair! No spelling mistakes. And it's okay when you do make them, we all do. Brain fog, fumbling fingers, exhaustion. What's to do but smile about it?

I don't have EDS, but I wanted to say WELCOME!! I am so glad that you found us! The illnesses may be different between us, but the challenges of being sick... it is a Universal Issue among us all, eh? So it is fabulous that you are here! *brings out welcoming tea with small sandwiches and fresh fruit and plates of goodies*

If english is your second language it doesn't show!

As for coping, acceptance is a huge part of it! but before you can accept it, you need to grieve for the life you had before, if that makes sense. You will accept it when you are ready. You can't change who you are, you can't change the illnesses you have! you either go with the flow, or it weighs you down. Just take it a day at a time! That's all you can do .

Huge hug for you! Just know we are here for you, Happy or Sad, Calm or Angry as all he**

Take care hun

Hi Eclair,

First of all, welcome to Spoonville! Where I live, over 50% of the population speaks English as a second language - you're doing very well. *adds plate of brownies and Nanaimo bars to Juanita's welcome gift*

Like Wendy says, you probably need to go through a grieving time. It's a process of getting used to the idea that this is the "new normal." It's not ideal by any means - it is what it is, if that makes any sense. There are going to be good days and bad days, which I'm sure you well know. One thing you can do which helps is to find what makes you happy, what makes your life worth living, and then do it. Use your spoons as wisely as possible. And when you have days that drag you down, emotionally, physically, and/or painwise, you can always come here for solace and support and laughter too. We, of all people, know what it's like to walk (or however else you get around) a mile in your shoes.

Here's some spoons to get you through the rest of the day...

i have my perks like chocolate, my teddy bear, and Golden Girls to help me smile when i'm down...i also see a pain oriented psychologist who's helpful. And i have a friend who'll always come down to read to me

I'm still working on the getting happy bit, but when I feel well enough I find that the things that I love the most are what make me the happiest. Its really just a matter of being well enough to do it for me, and that fact that I'm just not dealing with illness very well right now.

I'm sure that you'll figure it out. It takes time, but there really is no universal thing that can be done to make us happy. I sure wish that there was, but all you can do is keep pushing through it and try to come up on top.

Ow brownies, teas and a nice welcome That is a great help already (seriously)

I found this weekend one of the "make me happy things". My little niece of 2 jumped on my lap (awch ), threw her arms around me, and gave me a 1000 kisses... and all this coming out of nowhere. *stores it safely in the happy bag*

As for the spoons... I still have no idea how many I have. But it seems to be always less than I think I am the kind of girl that can't sit still on a good day.

Another question:

Are there more people that have problems in the same area as I? (pelvis, hip). The fysio wants me to use some kind of brace, and I am curious if someone has some experience with it?

Hi Eclair. I'm another one who's just recently been diagnosed. I can relate to finding it all difficult to accept, especially the idea that we're going to be in some degree of pain for the rest of our lives, which is not a fun thought and can definitely get you down. I would definitely accept any help (e.g. braces) that the physio offers you. My biggest problems are my hands and knees/ankles, and although my physio is reluctant to start with braces around the big joints right away, she's recommended some wrist braces that are making a huge difference with my hands. Have they suggested any other types of treatment, e.g. for pain? Decent painkillers can improve things quite a bit, and they take the 'edge' off the pain-related depression that can be a major problem.

Best of luck with all of this. And welcome!

Yes i have back/hip/pelvic subluxations but there is no brace that can help it...or none that we've found

I have back/hip/pelvic stuff too, and I've never heard of a brace that will help it. I know that a girdle or something like it can sometimes help keep hips stabalized, but that doesn't always work.

Yeah i tried a girdle but i kept dislocating fingers and wrists getting the darn thing on. We tried the next size up and then my hip popped out so that idea was bust

Sometimes when I feel depressed the only thing that makes me happy is music, I know maybe is not gonna be significant to many people but because Im almost all the time at home this is one of my relaxation techniques, even sometimes it helps to get through the "daily pain". My favourite musicians are The Corrs and my fav singer is Celine Dion.

Ive been having troubles with my hips too but i havent wear a brace yet, I hope it works on you!

Hugs