Update..

A week now on morphine in agony with popliteal cysts too out off it to type much forking out alot of squids to see a doc privately as my nhs 'urgent' referal isnt until July. Because I have EDS this whole thing could put me in a wheelchair... needing 24hr care all provided by my amazing friends and family. Will update when I know more.... :( not a happy bunny, Emma xx

Knees still bad...

cant type much just thought I'd show you guys how my knees are today... :( Doc calling tomorrow hopefully will have some treatment lined up....
Emma x

Knee Hell.

Hello..
So.. This is what's been going on. My knees are MASSIVE and AGONY. My gp thinks I have ulcers in the back's of my knees, I'm waiting on an emergency referal.. meanwhile I cant walk, am in huge amounts of pain, and my kneecaps are in the wrong place the whole time! They're getting worse by the day. Meanwhile they've put me on morphine, with strict instructions that if my heart bothers me AT ALL I have to go to AandE (urgh.) Anyone with EDS knows how frustrating, traumatic and often futile that can be, as alot of doctors have never heard of EDS or they think its 'just' hypermobility or 'just' stretchy skin, they have no idea the extent of the complications and mostly you just end up trying to convince them you're not just a hypochondriac or flat out mental. As if I'd chose this for christs sake. Anyways, quite dosed up so not typing great, going to get back to 'resting' hahaha ironic word to me, that. Will report in when I know anything else, enjoy the gross photos taken earlier today (my poor pins!!!)

Nearly forgot, huge thankyou goes out to my friends William and Kirsty for practically carrying me to and from the gp, not letting me out of their sight, running around like blue-arsed flies to make sure I have everything I need, and actually managing to keep me vaguelly cheerful despite everything.... I cant thank you guys enough, Much love, Emma x

Floaty kneecaps suck... But Little 'Un rocks!

Helloooo,
Cant type alot just wanted to upload the photos from sunday of me and my little sis in her EDS support shirt (see yesterday's blog for the whole story) and also the terrible state my knees are in today (walking and just sitting or laying comfortably is a hell of a task today, seeing gp tomorrow, hopefully he'll be able to arrange some ultrasound or something, as I still have no physio :(.....
Doing Eds style thumbs up....!....Hahahahahahaha......!.....
My wonderful friend William.......
"You should see my hair under this hat!!!".....
Go Little 'Un! She ran 10K in the blistering heat to raise nearly £300 for EDS support (note the EDS tshirt).....

And here's what my poor pins looked like this morning.... :(
Ouchies!!!!! Well worth it to see my little sister so happy and empowered though :D.... though I wish I did'nt have to pay such a price for two hours on my feet!!!!

Emma x

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

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

Broken tooth!!!

Well what a depressing day. Skint, broke my tooth and feel like I've been in a car wreck, honestly, some days it's just exhausting being me.
Though I did find this informative little video on youtube via another EDS patient's blog..

http://www.youtube.com/watch?v=PunQu-bId1M&feature=player_embedded#!

I thought I'd share a work in progress with you guys, I am working on a dedication piece, as I have always loved this painting by Frida Kahlo...Frida was certainly a lady who knew a thing or two about living with pain, and I have a very similar scar on my right big toe.. so it seemed the most logical piece of her's to do my dedication themed to. I took many photos to work from, here are some and also the piece so far....


Well, not much else to say today except ow so I'll leave you with my newest finished piece... 'FireTree'


Emma x

Sunday adventure still paying for it now.. but worth it :D

Had a wonderful day out walking in the countryside with my friends on sunday, and am still suffering for my short few hours doing what healthy people can take for granted.. but I still think it was worth it and am still smiling despite the pain! I will hopefully have some nice photos from the day to show you soon :D

Meanwhile, here's my latest painting, which is a gift for my friend and carer..


And a photo I took last summer in the park, in hope of lots of sunshine and EDS friendly warm, calm weather....!
Thanks to my friends with whom I shared my lovely afternoon walking in the bluebells and making a fuss of lots of beautiful ponies, you know who you are :P Emma x

Head and guts full of wasps?.. Here, have another pill...

Well, what a day...
non stop appointments, injections, phone calls to and from medical people, banging my frankly already sore head against the ingnorance and flat out disregard of the difficulties and implications of my illness within the NHS and in world at large. As one specialist rightly stated, I have become a medical hot potato. Bah!
Luckily I am blessed with amazing friends and family and had alot of support today too :D (you know who you are! x)
So on that note, here's a painting I did last year upon my return from a long stay in hospital that is expressive of the mental freeze caused in me by the medical mincing machine,... (It is called 'The water remembers this moment as brittle'


"If I was crying, in the van, with my friend.. it was for freedom, from myself and from the land"
Emma x

That's not a hotwater bottle.. thats a life raft!

Well, seeing as I felt fairly ok yesterday I had abit of a mission about tidying and seeing friends and picked lots of bluebells from an overgrown garden.. had a vaguelly active day by the average persons standard.. thought by the evening what a nice surprise it was to be achey and tired but not entirely broken or in screaming amounts of pain... this is what is commonly known as speaking too soon! managed to subluxate my left hip just getting up from the sofa and have felt like roadkill and been laid up ever since :(
So cant really type alot, here's some more pictures instead (My view of the world today.. me working.. a work in progress) Enjoy xx


"When an inner situation is not made conscious it appears outside as fate" Karl Jung

Cold Day

Anyone else with Eds (or other conditions such as arthritis) will understand my lamentings about cold weather and low pressure, and as it is bank holiday it is of course bleedin' cold!... So in the spirit of feeling better here is a photo I took around this time last yeah that I think hangs heavy with a sense of changing of the seasons, and therefor to me it is a very cheering image! Finally the warmth is pending!!!Despite the pain and my joints being very difficult today, I have been battling on with a very big painting I'm working on, the sheer logistics of trying to get comfortable to work on a piece this big are just silly, but I'm hoping my struggles will pay off...
And in the spirit of this blog I had better upload abit of art to show how I'm feeling today... here's a detail from a piece that has been sitting on my extensive to-finish list for almost a year now! Nevertheless I like it, I hope you do too.Emma x

First Post

Well, as typing is very painful for my back and shoulders and I've just spent ages messing around making this look like I'd like it too I shant be rambling on today, I'll just pop up a couple of fairly recent sketches and paintings for your veiwing pleasure/displeasure (as is the nature of pain-art!)
Enjoy! Emma x