Comments on: Hypersensitive

By: Pop and Ice

Pop and Ice — Tue, 09 Jun 2009 04:00:10 +0000

You're breeding an EDS army? That's freakin hilarious! I am glad you see some humor in the situation. I'm eventually going to create a 2nd blog to talk about my daughter's experiences with EDS and then one about my son having Asperger's Syndrome (who also has EDS, but no problems as yet). Pop and Ices last blog post..Jesus Come Heal Me!

By: Barbara

Barbara — Thu, 30 Apr 2009 21:44:03 +0000

I'm with Ree - sounds like a damn fine idea. I'm going to be careful what I say in future in case your pokey fingers (and elbow and bum apparently) can stretch over the internet. My husband's knee does the sublux thing (thank you for a new word) - it always scares me stupid because it obviously hurts him a lot. Barbaras last blog post..120/365 - Brave

By: talina

talina — Wed, 29 Apr 2009 01:53:23 +0000

So glad you've got some answers, I bet the family is also pretty glad huh? Anything preventative you can have the kiddos do so they don't hurt as much when they get older? talinas last blog post..6 weeks until the baby wait begins…

By: Bendy Girl

Bendy Girl — Tue, 28 Apr 2009 13:26:07 +0000

You’re so right about the awareness. The upside being that eventually that awareness sort of becomes a secondary thought process and you’ll just get on with your day in a slightly different way. Instead of say ignoring pain/fatigue/muscle weakness/whatever joyful symptom your body invents, carrying on and ending up in a sick, collapsed mess the awareness means eventually you’ll just adapt. Feel over tired/lightheaded/dizzy, no problem that’s autonomic so fluids and feet up, caffeine and a bit of sugar if it’s really bad. Shoulder’s irritated, cut back on computer time, etc etc.
The period directly after diagnosis is a tough one, but with a supportive family like yours I don’t think it’ll be long before you all just ‘bend’ and go with it. (I know, I know I just couldn’t resist!)
BG x

By: tiff

tiff — Tue, 28 Apr 2009 09:10:29 +0000

Oh, sweetie. It's hard to take it all in, isn't it? Hard to accept after all this time that there really is something. Hugs. tiffs last blog post..Blessings.

By: river

river — Tue, 28 Apr 2009 05:55:35 +0000

Oh yes, (thanks Bea) where is the short hair photo??

By: Kathy

Kathy — Tue, 28 Apr 2009 02:01:45 +0000

You know, I SO get this. I have a different and ultimately much more merciful genetic disorder – Coeliac Disease – but before I was diagnosed, I spent years feeling sick and exhausted and sporting weirdo symptoms and being told it was all in my head. Eventually I stopped talking about it because, yunno, I was sick of being branded crazy and malingering.

Now I know what was wrong all those years and it is such a relief to be able to say “I’m feeling really off today, think I must have got glutened yesterday” and have people around me understand and not disbelieve me. It also makes me much less anxious knowing on my rare bad days with it (which only occur when I’m careless, and accidentally ingest gluten) that I understand what’s going on and that it will pass.

As for doctors belittling and disbelieving you … be angry, and let them know. I did! (All but my beautiful current GP, who was also my pregnancy doctor, who was the one who diagnosed me).

Kathys last blog post..Menu Plan Monday – Winter is Coming

By: Bea

Bea — Tue, 28 Apr 2009 00:26:40 +0000

hah! EDS army! You and who's army?! Oh, THAT army. Here's to hoping that any coping methods you use will give you strength to wage that war. Oh, and short hair cut? WHERE IS THE PHOTO? Beas last blog post..The Monday that was.

By: Cat

Cat — Mon, 27 Apr 2009 15:45:25 +0000

I guess bendiness isn't all it's cracked up to be. Take care of those joints! Cats last blog post..Stroking the Shift Key

By: lceel

lceel — Mon, 27 Apr 2009 13:42:31 +0000

Our good Nathan is going to have to learn the techniques of effective massage. And you are going to have to start taking it a little easier on yourself. But you seem to know that already. Good for you. Because I KNOW what you go through, and I understand your pain. I just wish I could make your pain, and HER pain, go away. lceels last blog post..Silk Purses