Longest blog so far due to massive grumpiness!!

Well, despite having serious trouble doing everything today, including typing and making any sense through the haze of intense pain and strong medications, I feel the need to have abit of a grumble. And it being friday night, everyone is out and about (except me, of course, as per. Isnt eds evil? answer: yes.)
Had to go for yet another injection today, and frankly it really bleedin' hurt... and my insonia is back with avengance because the pain is so intense that I cant even lay down or anything i just prowl around my flat and cry and sulk and stare at walls totally consumed by the agonising mixture of pains of all kinds ripping through my body, one minute I'm trading screaming pain in my shoulder to support myself in order to rest my back for a moments ease from feeling that I may snap in half... then moving as the shoulder screaming at me gets too intense into a different position, one where say i lay on my back with my knees up to rest my hips and shoulder and then my back and neck start screaming and my arms threaten to pull from their sockets when I try to relax...and so I have to move again, it's always a trade off, one pain more for less of another, then change, then change, then change again...every few seconds or minutes if I'm lucky... add to that the muscle spasms, regularly having to re-position the stupid joints that slip or pop out for no reason (the sicker I am the more I sub and dislocate, which is just salt in the wound, frankly. It's hard not to feel picked on by this illness) the fatigue, the constant headache which often blossoms into full blown migraines with the throwing up and super sensitivity etc to go with it, the heart problems themself are a whole other paragraph of depressing blurb that includes feeling like im going to pass out, chest pains that get so bad i end up in AandE but there's never anything concrete to explain why I feel like I'm dying "It's just your EDS".... etc etc) the fact that every part of my flesh hurts so even just the soles of my feet on the ground hurts like hell... how the hell could ANYONE sleep like that?!?!?!... I lost my train of thought there, sorry, the point is I had to drag myself down to the docs for my injection despite all that and a tiny snippet of so-called sleep (I personally dont think it's that restful to get like 2 hours sleep then wake up with my arm misaligned in its socket (this is called a subluxation) and feeling like roadkill... then had to be really dedicated and force myself to my appointment and couldnt even sit down for my injection because I was hurting so much,...What really hurt about today was the fact that the sun was blazing... it was absolutely glorious, and I have waited soooooooo long it seems for the warmth to return and my body to finally go into its slightly less haggard summer setting, but apparently my coligen needs abit more sunshine to come out of hybernation, like a sleepy old hedgehog haha. (feel the sarcasm!)

I wouldnt have seen any of the sunshine were it not for a wonderful friend of mine who took amazing care of me and drove me to a park and provided many soft cusiony things to sit on and a big flask of tea so that I could get atleast some fresh air and sunlight, I even got abit of a sunburn on my shoulders even though I was not out for long. If it wasnt for my amazing friends and family I dont know how I'd find the willpower to breathe in and out some days, other days it's like they can give me their energy and joy just simply by thinking about what I'll be struggling with and making sure I'm helped as much as possible without the deep indignity I feel when I have to ask for help, and by still thinking I'm fun and interesting and worth bothering with when I'm feeling like a pointless shred of humanity that needs euthenising!! I dont think I could ever tell them how much that means to me that they can always find a way to make the best of it and are always thinking of me and being there for me and making me laugh, its incredible and I'm so grateful!

but...

I want to take EDS outside and stand on its throat and tell it exactly what I think of it, then maybe stick a pickaxe through it, or, in the immortal words of the great doug stanhope.. "... a boat oar, or a set of jumper-cables or whatever you can get your hands on at short notice"

Unfortunately these torture tactics are not being done to me by some external force that I can fight,... I'm just someone with EDS. Hence my paintings I suppose. What else can I do to keep my head on straight?!

Well.. on that note I better add a couple of appropriate pieces, the first is a piece I did around this time last year and has that hot, heavy summer feel to it I think, and is about my feeling about my EDS related heart problems.. it is called "There is a bird nesting in my heart' ... the second is just called 'Circle' and is about that feeling you get when you've been smacking your head against a brick wall trying to make something turn out for the best and it's totally fruitless, I think we've all been there! (If you hav'nt, nice life you have there!) I like these images together, the circles compliment.. hmm, maybe I was going through a circle phase?!, anyways, enjoy! (I hope)...

Also, I'm thinking of investing in a set of ring splints.. my hands are very painful and I am struggling more and more to paint, and my wrists hurt alot especially my right wrist when I paint, I think I over compensate with my right to assist my bendy fingers when using a paintbrush.. I use wrist supports but then my hands are agony, so it makes sense that they're not working in unison. It's just like with the rest of my body though, my hands and fingers look normal, but the joints are too mobile and click and crack and get all out of joint and my tendons hurt more and more... I am hoping I might be able to rinse a few more years of usage out of them yet... these are the ones I'm considering, if you have any knowledge or experience of them please let me know!

http://www.silverringsplint.com/

Emma xx