The price I pay....!

I have not the energy or strength to type much today, but wanted to let you know that my sister did a 10K run today for EDS support in the frankly sweltering heat and I'm so proud of her :D She also has EDS, but has a mild case and she is very athletic so has really good core strength and alot of good muscle to keep her joints in (though she does sub/diclocate and has very bendy thumbs!) She is very aware that she is one of the lucky ones in the sense that she has found out BEFORE she injures herself and ends up living like I do, she can do lots of preventative measures etc... regardless it is scary for her, as she sees the state I'm in and it's deeply unpleasant to see someone who you used to see horse riding, swimming, running, lugging boxes of bottles behind the bar, out dancing every night, etc etc.. becoming, well, this .. opening a jam jar or walking to the corner shop or even just getting out of a chair or hugging someone I care about is painful/agony/impossible depending on the daily whims of an incurable, untreatable illness... She is handling her, and my, situation very possitively by throwing her frustration into productive things like this, she raised almost £300 today for EDS support!!! I went even though I wouldnt have left the house today for anything else, as I was, and am, very sick at the moment.. but I forced myself to do it.. having EDS can be like running a marathon itself sometimes because all the time youre just standing or sitting your muscles are working like mad to try to stop your joints coming apart like a soggy jigsaw puzzle!! (The eds support groups logo is E D S written on unconnected jigsaw piece shapes, I think it's a brilliant similie... anyways,..) And just to make things super tough the winter hybernation sleeping pattern is over, and the summer insomnia has begun, I passed out for two hours earlier but now I'm wide awake as I woke with really swollen knees that hurt like hell (I think standing on my very bendy tippy-toes to see if I could spot my sis crossing the finish line may have been deeply unwise.) Have uploaded a couple of photos so you guys can see what I mean by swollen, as you can see my kneecaps are dimpled underneath, my kneecaps are downright refusing to sit where they should, theyre very mobile kneecaps I can manually move them around alot and they get in the wrong place sometimes when im walking or bend them when the cap isnt on straight and its not fun I can tell you. So, Not easy to sleep as it is!!! You can probably kind of see how wonky my legs are in general in these pictures...


This is a quote from my sis's blog about her experience doing the run today...

"I also saw friends and my hero and sister Emma but the absolute best bit was finishing the Hull 10k and a couple of my friends being there and most importantly Emma there to see and celebrate :o) It was so hard for her to get there and I know she'll be suffering tonight and undoubtedly tomorrow for it but she was there and it made all the agonising, sweaty, heat-stroke ridden sleep-deprived (3 1/2 hours...that'll teach me to hang out with friends before an event) steps around Hull totally worth it. I even got a bit choked up before I started, and every time I was dying to walk I'd think of Emma and the few times I did walk I silently apologised to her in my head - in the end I came 1981 of 5000, which is fairly respectable considering it was a heat wave and I started right at the back :o) I'll know next time to wriggle right to the front. What a day."

Love you Little 'Un, dead proud of you :D xxxxxx
And a big thankyou to my friend William for being my wheels and my pack horse and my guardian angel all day long. xx

Now, back to trying to sleep, typed more than I thought I could, lots to say! So it's not all depressing pictures, here's a picture of the card's I made for my twin niece's 4th Birthday recently :)
Emma xxxxxx