Comments | serenity151979: You wouldn't like me when I'm angry

serenity151979

You wouldn't like me when I'm angry

Feb 05, 2010 22:09

I debated whether to lock this post and make it friends only, but in the end I decided to leave it unlocked, as I know the EDS newsletter can only link to open and public blogs, and perhaps other newly diagnosed people are kinda going through the same things I am.

( The one where I whine self-indulgently for a while )

eds

Comments 13

myrtlebaggins February 8 2010, 21:20:53 UTC

Because they were the last things I saw before writing this : Those photos, OH MY ACTUAL GOD, WOMAN! Does it hurt when you do that? And even though you clearly can, is it ok to do it? It won't cause any damage or anyfing? Yikes.

It sort of doesn't feel like this is the right thing to say, but I love this post. It's so honest, even though it's heart-breaking. Obvs I knew you had been doing not so well for the last year or so, but I don't suppose I'd realised how much things had changed :( What's the prognosis for EDS, does it tend to stay at the same level or are there better times and worse times like with ME?

What is the support system like for EDS? Are there any national charities or regional groups? It makes you wonder how many people are out there still undiagnosed.

I think it's an aces idea to leave this open...being a fan of the Google, I've found lots of things out about various problems etc by finding random blogs and pages. It's really helpful and I'm always very grateful to the people that take the time to write

serenity151979 February 9 2010, 11:20:54 UTC

Thanks for replying =) As for what I'm doing in the photos, pretty much all of my joints have a chronic pain in them anyway, the feet and the fingers don't really cause much more pain than what's already there (unfortunately my worst hip pain comes from the motion of walking), the arms does hurt to do that because moving my shoulders hurts a lot, but I just wanted to show what it's like. I don't do that often! I'm not really allowed to do 'party tricks' now as if can risk further damage/subluxations etc. I thought it was a good idea to get some photos then if anyone wants to see I can send them those rather than having to do it over and over again, which will be worse in the long run ( ... )

wonky_diva February 10 2010, 04:04:34 UTC

Thank you for mentioning this on the community. I can relate to much of what you've said.
No matter how many answers the dx of EDS provides it doesn't fit anything. And why it is more accepted than my previous dx of fibro I still don't talk to my friends about it because I'm sicker than most websites say I 'should' be and I don't want deal with any flak from that. I've lost friends too.
I can also relate to having a hard time writing. I try to help my partner with his fiction but I hardly write anything of my own.
Hopefully we'll both get to good point of acceptance.

serenity151979 February 10 2010, 16:47:47 UTC

Thank you for taking the time to read. I was pretty sure that I wasn't going to be the only person going/to have gone through feeling like this, so if it strikes a chord with others, I'm glad to be able to share. Here's to working through it and moving to the next stage =)

ghymoreid February 10 2010, 10:49:08 UTC

Yeah, this kinda hit me a couple of years ago too. For me it was more that something that's always been an integral part of who I am - the flexibility (I was a gymnast and a dancer and an acrobat and *ahem* a contortionist for a while) was actually down to this disorder and, frankly, was doing me damage. Something that I can't do anything about, something that I was born with and couldn't change if I wanted to, is "bad". I mean, I can take vitamins and do my physio (which, if you find a good one who understands hypermobile people, will definitely make a difference - that and getting the right balance of pain medication) and not smoke or drink to excess or eat fatty foods or have wild abandoned sex with inappropriate partners ... but I can't stop being hypermobile. I can't wake up tomorrow and decide, "You know, I'm sick of this EDS shit. I think I'll try hang-gliding instead." And it's a headfuck ( ... )

serenity151979 February 10 2010, 16:55:34 UTC

*grins* OK, you're totally on my 'amazing people who inspire you' list. =) Thank you for taking the time to help, reading your story does give me hope that there is some light at the end of the tunnel, and I can get there. Even if I have to have some Gollum days in between (I'm totally stealing that, that's awesome) And I don't smoke or drink anyway, and the 'diet' thing is something I'm working on right now. Um... not counting the hot chocolate and cake I had this afternoon, obviously. =b

Yep, I have quite the DVD collection as well! My set up is in my bedroom, so when I'm feeling really crappy I just go to bed and watch a boxset or a really good movie to distract myself.

Also *yikes* at your photo, lol. I can do the crab, but I definitely don't bend that way! WOW. Does that hurt? And.... how do you get up again?

ghymoreid February 11 2010, 09:11:56 UTC

Hot chocolate and cake totally allowable. Especially if you're (like me) on drugs which mean a Black Russian's probably a bad idea. ;) I have developed an indecent fondness for Green & Black's hot chocolate, and sometimes even indulge myself with the Lindt variety. Tres nommy. (I also still smoke. Less than ten a day, but nicotine still plays a part for me. A girl's gotta have some vices left to her ( ... )

serenity151979 February 11 2010, 14:43:22 UTC

Hahaha, pathologically clumsy would be one way of putting it! I can't blame mine on small feet though (UK size 6 with loooooong toes) but my proprioception is totally screwed. There's not a doorframe I don't know intimately. At least now I have a reason for tripping over my own feet or walking straight into a chair that's BEEN THERE FOREVER.

Luckily so far I haven't had any pressure from my doctors to lose weight, although I'd assumed they would (have heard plenty of other people's tales) but I would like to lose a little bit for my own health. I'm just trying to do it slowly - problem is with me is that I don't have a great appetite at the best of times so I don't tend to eat much, then I'll get all 'wurgh' and need something quickly and tend to go for junk as the quick fix.

Thread 6

You are so correct! vw_air April 13 2010, 05:39:03 UTC

Thanks so much for this ( ... )

super_loulou June 4 2011, 15:22:32 UTC

Hello my love,

Thank you so much for posting this unlocked and linking to it on the EDS community I just found. Looong story but I'm 35 and was only told 2 years ago that I have 'some hypermobile joints' my an osteopath. After 2 years of reading, failed NHS physio x 2, a concerned private physio, and a rude rheumatologist, I have recently realised I have EDS3. Next week I'm off to UHCL to see a good rheumatologist (not Prof Grahame sadly but one of his colleagues) and hope to get an official diagnosis. I totally recognise the stages of grief, over the last year (which is when I knew I had HMS) I've been through it all. I won't bore you with any more of the saga, will write about it on my blog soon. I haven't been updating my LJ for ages but intend to start again so please feel free to add me. BTW I call 'snap' on your photos, except I can't touch my inner arm with my finger like that!!
Great to 'meet' you, hope you're well, Lou x

serenity151979 June 5 2011, 13:21:16 UTC

Lovely to meet you, I want to wish you the best of luck in getting your diagnosis. I wish I could say getting diagnosed is the end of a long journey, but really it is only the beginning of a brand new one. But at least on this journey you will be informed and will have support.

I run a hypermobility EDS support group on Facebook called Talking HEDS, if you're on Facebook feel free to come over and take a look.

https://www.facebook.com/group.php?gid=111368602244664

Lots of love and luck xx