Disconnection Dreampiece

Disability Myths

Painting is called 'Optical Illusion (the mirror is the lie)'

..Well, disability myths, and myths about what it's like to have a rare illness.

Myth 1) If it turns out you have something rare the Doctors are all over your case like white on rice, because they're so fascinated to figure it out. The reality is there is no interest in a cure for a couple of thousand people when there are the cures for millions to be found, population wise and fiscally. In fact alot of doctors think eds is "just hypermobile joints" or "just stretchy skin" and show no interest whatsoever in the condition, which is merely perverse if you ask me, it is a fascinating condition that doctors outta be ashamed of themselves for ignoring, there are so many clues into how a body is SUPPOSED to work in the ways (and whys) my body wont.

Myth 2) Diagnosis will result in self respect regained and people stopping with the hypercondriac remarks, the only change is people no longer say it to your face (because they secretly know they're full of shit but the world is less scary if you can label people with horrendous illnesses as purely weak, it creates a comfort zone of it-wont-happen-to-me-its-not-even-happening-to-her-shes-imagining-it. I know which attitude I see as weak.)

Myth 2 (b) Diagnosis will mean the ceasing of the endless psychiatric referals and prescriptions of antidepressants. If it's in your head.. numb it, if it's real.. numb it. It is getting insulting, how much surviving do I have to do before someone shows a shred of faith in me? I dont need pacifying I need understanding and ideas on how to reclaim my life from this shitty illness.

Myth 3) If you have to go through some horrendous never-ending physiotherapy rehab or equivalent ordeal it occurs surrounded by doctors, therapists and enthusiastic friends and relatives. Mostly it happens in a cruddy nhs gym room, or some curtained off cubicle, alone (because people have limited time, and capacity to watch their loved ones suffering, that is the harsh reality of it), often with the inspiring backing noises not of some heartfelt uplifting music but of some poor woman with a serious back injury whimpering as some robust, cheerful physio pokes and prods at her and explains why the only fix is to battle through it and even though you know she has a greater chance than you of healing, regardless, you would give all the little joys you have left to not have her hurt so bad to be whimpering like that. If they are so concerned for my mental health should they not make rehab... er...rehabilitating?!

More to come but my everything hurts so have to stop

Night my loves x

reactionary sketching

Arctic Nights

Laying in the bath at 3.34am looking out the window through a narrow view from below I realise that I am not seeing only arctic weather, blown across the oceans, but also seem to have aquired arctic nights, of the kind when the sun never sets,.. because at 3.34am in the uk you shouldnt be able to see the sky glowing like that... then I figure it's the snow doing lots of showy light reflecting and thats why it glows like that when it should be pitch black at that hour.. this light is no sheer moonlight. My body is behaving as if the sun never sets too.. insomnia isnt a strong enough word.

It's worse when you're single, because even an asleep person is someone THERE, and you cant call a friend at 3.34am to have a chat as if it's 3.34pm, not if you want to have any friends left to call by the end of the week! and then if I do sleep it's because I pass out in the middle of the afternoon and sleep through the buzzer going as various friends drop by to see me.. I'm missing even the meagre social life I have stuck at home (no insult intended to my amazing friends there, quality not quantity in a social life is really nice :) It's just a shame I cant go clubbing and pubbing and many other things that mean having tons of friends, like they all do, it's even more of a shame if I sleep through everything good)

So, I've got bronchitis, insomnia, all my eds and fibro symptoms going mental for many reasons, so have been bedridden/houseridden for weeks, my new living room has hardly been used, why sit in a chair in agony when you can lay on a bed in slightly less pain? the fact that its freezing makes all my joints swell up and my hands feel as useful as an 80 year olds, and I'm snowed in, and skint... and lonely, so of course I'm bored out of my freaking mind.

But it could be worse..

http://www.helpanton.org/

Thats the reality of life with a crappy genetic illness... your life is hell and you are considered deficient.. invalid.. as my best friend pointed out its all in the words in - valid, non valid. I'm a million times luckier than that poor boy though, because I have medical help and support, can you believe they separated him from his twin too? Talk about a primal wound. I dont know how people do things like that and still live with themselves, I want to top myself everytime I'm late for an appointment or upset someone being grumpy cos I'm hurting, if I did something that callous I think I'd just cease to exist on the spot. It makes me want to go all Dexter on their asses and find out who the twin is and stick a letter (with all the photos of his poor brother suffering that he wont be told about, I would bet my life they keep it a secret) in a safe box and post him the key when he's sixteen, that would shake some shit up in those evil peoples lives. I know its very basic of me to feel that way, but how can something like that be allowed to happen!? I hope he does find out somehow, they hurt him too, separating them, he wont know why he's hurt but he is, I think thats so cruel, all for the having of a child. I just dont get it, I could not have a child if it was not with some open honest intentions, hence the decision not to bear a child with the risk of them having eds, that pain can be spared by never happening, these people chose the risks then chose to abandon when he was not perfect, what are they going to do with the other kid if he is in a mutilating accident or just plain turns out ugly? leave him in a fucking ditch like an unwanted sofa?! Christ on sale. I can only quote Doug Stanhope at this point

"It's like people have kids just to do horrible shit to them"

Ok well I'm ranted out for the moment so shall return soon, thankyou to my friend Nate for being dead supportive of my blogging, but at times like these it seems like a drop in the ocean and only for me, and I'm not sure it even helps.

Night x

Well, it's snowing... Which is lovely and all, visually, but my ligaments have morphed into old dry elastic bands ie they go stretch... stretch.. snap! under very little pressure meaning I pull a lightswitch cord or brush my hair and my arm comes out of the socket.. I turn to get the milk from the fridge and my leg pops out.. it's horrific, upsetting, massively painful, frustrating, and not bloody convenient, frankly. AND I have yet another chest infection, and yet again am struggling to breathe (yes, I am quiting smoking soon, honest. My gp shouldnt really say this but he says he does not judge me for it as I had to quit most of my lifestyle, and drinking as it doesnt mix with the meds, so smoking is my one little vice/indulgence I have left, and there's no good time to start quitting in a life like mine. I know excuses, excuses, I'll have to focus on what Lloyd Pye told me, that it turns all your skin (inc your genitals) to leather, as the tanine tans the skin like leather through the blood supply from beneith... ew!)

The only way I can sum it up is this.. I coughed, and it put my hip out. Thats how bad my joints are today, thats how bad my chest is today.

Also there will be non of my usual bonbardment of photos and paintings today as I have no files to upload, as I am currently on a borrowed comp, my laptop having died (containing all my artwork from the last 10 years and more importantly currently my dla application details and appeal stuff.. so now I have no copies of my own (yes, I forgot to back up, I'm an idiot. I know.) I am assured it may be able to be fixed/files retrieved atleast but meanwhile I'm pretty nervous, and annoyed because my now empty weekend was ment to be spent setting up my etsy page to get more of my artwork out there so I can attempt some day to make my own living and not have to jump through bleedin' hoops anymore!!!! It seems a long way off at the moment, considering how hard it is to paint now, but I'm trying really hard at physio and I hopefully will be getting ring splints soon, so my hands might be more robust and less painful when I have better structure in muscle and silver :) Alot of my plans involve my hands not being useless. Fingers crossed (geddit?! hehe groan at will, but I loves a pun.)

Speaking of artwork.. I've been making masks for a masquerade ball, which has been alot of fun, cant wait to see my best mate's face when she see's hers! :D

Anyways, I'm all typed out

Nighty night x

The poor man's Mrs. Haversham

The return of the poor man's Mrs. Haversham! I'm sure my entire 3 watchers will be so delighted hahaha anyways, I thought its about time I updated this, I've been really useless of late when it comes to staying in contact with the outside world, life has kept me plenty busy with DLA appeal (apparently I'm not disabled! hahaha well frankly i'm not even bothering with that rant as it's so obvious, rest assured I'm fighting it, as long as it takes. Had I gotten it the backpay could have bought me an electric wheelchair.. I wonder how they think it feels spending christmas housebound?), moving house (YES! I found a better flat! JOY! It's tons better in every sense but thats a rant for another day), trying to cope with my body going apeshit because it's winter, wish I were better prepaired but not guilty about it as its not for want of trying, and dealing with loads of annoying life admin and appointments blah blah blah basically, not much fun. I did actually go out this evening though, for the first time in months, to see the new Bill Hicks documentary at a wheelchair friendly venue, it was lovely to see my perfect man's face on the big screen (yes Bill Hicks is my ideal man, and if you think thats wierd it's cos you havnt evolved enough yet :P) Not much of it was news to me as I've been obcessed with Bill for years, but it was good to see a documentary about him that wasnt all focused on censorship or swearing or politics, though these are valid angles to view his work it was long overdue for there to be a film about the man himself, and they showed very well that he wasnt just shocking, but actually a comic genius and a very inciteful man (I happen to believe he was a prophet but thats me hehe!)

But, I was nervous, about the whole been seen in public in my wheelchair, I havnt done the whole 'coming out' thing in my social world as when my knees messed up I was just on pause waiting for them to get better THEN I'd go out again.. but it's been nearly 7 months and my knees are a state still, and when I ask what will happen, like if/when will it get better, my rheumatologist shrugged and said "Emma, you've got EDS" Which I assume means it could be days or forever. I have no freaking idea how to plan for/accept/co-ordinate my life around an illness that meakes me a maybe-cripple.. me and my friends have ended up calling it coming-out and "cripples annonymous" as we have to find ways to joke about it, cripples annonymous was inspired by my friend Aoife saying I need someone who's been through it to talk to, and I said "what? Cripples annonymous? Hi I'm Emma, and I'm a cripple.... Hi Emma!" ... "today we're going to talk about how the hell to pull when people seem to not even see you..." If only. Aoife thinks my experience of all this is a book just waiting to happen, it's a shame I'm not a great writer, or have the energy, but maybe I'll have a try at it next time I'm full on stuck in bed it's good to have little projects. I think what it all comes down to is that all this has happened to my body and in the process it's changed me and my life so much I dont even know who the hell I am anymore, all the stuff I used to do isnt an option anymore as I used to be a really active person, hardworking, and a social butterfly... now I cant do anything that provides that for me, tonight was good but I couldnt drink, and it would have been a nightmare getting around if everyone wasnt sitting down, so it was all very chilled and civilised so do-able, but the old Emma wants to go clubbing til 3am dancing her arse off, running around making a problem of myself usually, and doing it all in high heels and corsets and drunk off my ass. I miss my old life, and my old body, that let me live.. now I live in this torture-chamber/prison/super-sensitive excuse for a body that thwarts me at every turn and means even a gentle hug from a friend is agony. I worry that I'll never feel and real human closeness again, I'm scared that non of the pain will ever ease (after 8 years of constant pain its allowable to worry about that) I grieve the babies I'll never have and all the millions of plans and ideas I had that now would be impossible, the woman I could have been, the life I could have had. I look at it alot of the time objectively, in the form of lists and logic, trying to plan and figure out ways to adjust and enjoy living, but there's always this really strong desire to scream "but this isnt anything I want! How the FUCK am I ment to enjoy anything when I'm ALWAYS hurting?!? I JUST WANT IT TO STOP!!" which I dont of couse (most of the time) because it isnt constructive (and I found bruising my hands punching the sides of the bath at the same time wasnt a fun addition to my pains.) Frankly it just seems so deeply unfair and I dont know how to be ok with it all, and when I'm in that chair it feels like people act different around me, and I act different, and I dont feel like anyone could ever find me attractive now, and even if they did want to be with me I'd think they were crazy anyway, who would choose these limitations?! Where are the guys who actually like girls where the conversation is the connection, and the personality that matters, and every challenge is an opportunity for a laugh? and who could take care of me without disempowering me or himself, and also be a lefty radical and a fan of the wierd and wonderful, and nice looking wouldnt go amiss but I'm not shallow... many of the blokes I seem to draw to me are anything but those things, its hard enough meeting people at all as I seem to only go to hospitals these days, which is hardly an appropriate place to go on the pull hahahahaha can you imagine?! and hard enough to meet people who get what I'm on about anyway. Since I did this whole good vs evil thing like a year ago, and I lost, unfortunately, misplaced trust and loyalty for someone that was not returned ment that I lost one of the most important people in my life who was spiritual family to me and the thing that really pisses me off still is that non of it was right, no-one did the right thing or got to end up on the right path, no-one kept their loyalties or were loyal to themselves or their own hearts, no-one kept their word or told each other the truth.. except for me, in the end. I learned something I cant unlearn, that my ethics and my respect for myself is greater even than my willingness to sink to corruption to achieve what I know to be right. I'd rather let someone choose the wrong path than do anything underhanded to set them on the right path, and respect is greater than love, its the main component, love without respect is like chocolate cake without chocolate, whats the point? but why is always the one who knows that who has to be the fucking brave one all the time? The whole experience has soured all attempts at relationships, and all thoughts in my mind of potential relationships, because all I see is a point in the future when it turns out that they hav'nt got my back at all and then I have to be all brave and cut throat about it again because I cant be with someone who isnt loyal and brave, and I cant believe in it anymore after everything that happened, a friendship like ours ending like it did, and the complete lack of a possibility that I could ever feel any different about it now doesnt mean that I dont wish it all different... what it does mean is that I dont trust peoples motives, I avoid loyalties and isolate myself so no-one can hurt me, and spend alot of time thinking back over the years, trying to find a way that it was my fault, in some subtle way did I mess with the fates? all that ends up happening is I remember everything we ever had since being little kids to adults, all the fun and dramas and knowing someone really beautiful in every sense.. I miss him like I've been skinned and have to ban myself from thinking about it by focusing on that day, when I knew before I knew. because I knew in my guts what would happen, it wasnt dread, it was knowing. I focus on that because it makes me furious at myself for knowing loads of stuff and still allowing myself to be chewed up and spat out because I so blindly believed that in the end everything would work out right for everyone, I wanted the madness to end. I wanted everyone to do the right thing for themselves, thats all it would have taken..the complete wreckage at the end,.. well, all sentimentality is evicted til further notice. And yes, my health was an issue, in various ways, though he would have been to graceful to admit it, and I was too proud. And all this stuff I'm going through now is that bit rougher without him.

Well I've haggarded my shoulders typing this and I doubt it makes sense but it made me feel a little better just to get my bile out, so thanks for reading, 3 watchers! ;)

Much love, in the very appropriate words of George Carlin (another late great american comedian) "So long, farewell! may the forces of evil become confused on the way to your house"

Emma x

Another friday night... ( ... /monday morning)

Well, what a week..

I had to basically cancel every single plan from large to small, necessary to leasure based.. all cancelled because I have a cold. That's one of the majorly annoying things about having EDS, the fact that a cold or bug can totally knock me for six. Not alot to tell, or alot of typing left in my hands, but wanted to upload some random images from my week...





And... I wanted to introduce you all to my friend's new kitty, Mr. Darcy.. is he not the cutest?!




xx