Thursday, December 16, 2010


I commented on a friend's facebook status the other day, and he was online at the time, and we started IMing. He is currently out travelling the world, and he's been practically everywhere. I have only seen him once or twice since high school, which ended about 5 and a half years ago. It made me realise that the most changes I've been through with EDS, and the most injuries, and the most disabling aspects have all come SINCE then. I realised that this friend of mine, who used to be one of my closest friends, really doesn't know me at all anymore. He was shocked when he found out that I'm disabled. He was shocked to find out about all of my medical mysteries, and the lack of care I'm receiving. Back in high school, I only really had daily issues with my left shoulder, and various sprains (along with being very klutzy, and having no sense of balance). Now I am having daily issues with both shoulders, both hips, hands, wrists, ribs, neck, spine, etc. It shocked ME to realise I had changed so much in such a relatively short amount of time. I live with me every day, so I adjust slowly to most things when they creep up.

I'm not the same person as I was back then. Not even close. I am definitely more vocal when things seem to be unfair, for myself or those around me. If I see someone who needs help that I am able to give, I will help to the extent of my ability. I find I've grown more compassionate, and less tolerant. I will NOT tolerate abuse of any kind toward anybody with a disability. I am cautious when offering aid to those with visible disabilities. I understand now, that even though we may look like we need help, the most helpful thing sometimes can be to allow us a sense of accomplishment, to know that we are able to do something, even though it may be difficult. I listen more. If I offer assistance, and it is turned down, I will not push.

I have more patience now. I know that not everything can be done RIGHT! NOW! DAMMIT! Just because we may wish it to be.

I think I've finally found my silver lining when it comes to EDS. Even though I'm physically a lot worse off than I was before I had all these symptoms and problems, I am intellectually, and emotionally a much better person for it.

And just in case I don't post again before the 25th: Happy Christmas to those of you who celebrate, and have a nice December 25th anyway, if you don't.


stipeygirl75 said...

I agree, I've found some of the same silver lining. Being at the EDNF conference was so awesome because people helped each other. I have trouble opening doors and my friend can't open twist cap bottles. We were all doing what we could for each other because we all understood what it was like to not be able to do something! We each had a different disability and pitched in with whatever ABILITY we had :)

Achelois said...

A meaningful post that rings bells with anyone with a chronic pain condition.

Happy Christmas 2010, I'll say it here as my blog is silent at present.

I genuinely hope that 2011 brings good things for you.

Flexability is over rated, creativity is ingenious said...

EPIC WIN for you!!
I'm so glad you've been able to find it. It has helped me deal with and enjoy life so much more, I hope for you and everyone it does the same thing.It's not always sunshine and lollipops, but it really changes the way we deal. Finding the silver lining is hard, very hard but we've got to do it by ourselves.

Lady of the Ozarks said...

I agree with you. In the three years since I've become physically disabled I've became a better person on the inside. I hope you have a very happy Christmas, too. :-)

jazzyteach65 said...


I was recently diagnosed with a connective tissue disorder/HMS/EDS Type III. Within the last two years I went from being a fulltime music teacher to being confined to home with a cane. I am only 28 and my body is breaking down. I know your pain!!!!!!! Patience is a b*tch, and it sucks knowing I may never play music again.

Stacey said...

Mine 'hit' while in university so I went away perfectly healthy and came home to apply for disability.
The EDNF conference was great :) I didn't even have to ask anyone to open my bottle caps, just handed it to someone and it would be passed around the table until someone could :)

It's hard looking back to what you used to be like, Ive been doing that lately too, but I have gained so much since then, we just have to focus on the positives.

jazzyteach65 said...

Stacey, if you ever need an ear to vent at or a shoulder to lean on, I'm here. I'm exactly your age and the whole thing is so new to me, so I can relate!

Bendy Blu said...

You are wise. And we understand each other. I recommend a book (don't be thrown off by the title) called how to be sick...