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

Rant-o-rama

I was raised with certain, often conflicting, attitudes about how I should conduct myself. I carry alot of strong feelings about emotional strength being important, to show hurt or grief or anger is to be weak. This is utter nonsense, of course, but is ingrained in my nature like the rings of a tree... it is not my baggage but I carry it anyway, along with my own. I started this blog to have a place to vent and process my feelings about my illness, and also to tell people who want to know what it's really like, too soothe the pain of walking around in a world who sees and treats me like a normal, physically robust girl with no real worries to contend with... whilst being the very opposite kind of girl. It's about time I laid down this baggage and spoke my truths. When you see me walk down the street, talking with a friend or wearing my headphones just having a stroll, you would not, could not know what it took to get myself out of my house that day, how many potent medications flood my bloodstream, how hard my heart works to be upright, how exhausted I feel, which parts of my body are constantly screaming at me please stop walking, please lay down, please I need heat I need stillness The boots the bag the clothes they're hurting me so please go home go home! I need to stop now!!!! NOW!! And you could not know the voice who fights back inside me.. NO. I have not left the house in two weeks. I need to walk with the people and feel like I used to, like I'm one of them.. I wont stop now. No. Keep your screaming to yourself. It gets shriller than me though, the pain, its bigger than me. So I walk home, every step like running a marathon pain tearing through me. My pride holding the limping, sobbing mess back until I make it through that door.

Everything I was has been stripped away to the bare bones, I used to live so thoroughly, used to run, and fight, and dance, and play, and swam and rode horses and always knew there was some fragility in my body that others did not seem to have, thought maybe it was my emotional sensitivity, manifest in my attitudes to my own body, that I was just bendy, and sensitive, like my mind ha ha

...Then....I hurt my shoulder. Moving a barrel or something, I remember I was at work at the pub because I struggled for the rest of the shift.. and from that day on to this... so I rested it, like I was told to.. but it got worse anyway, so I quit my job, did the physio I was told to, tolerated the pain of all the examinations and the look of sheer apathy in the eyes of the doctors, went to every appointment even when I couldnt hardly move, tried every painkiller/anti inflammatory/antidepressant/antihypochondriac pill they tried to help /tried to fob me off with.. other old injuries started to join in, my foot hurt all the time where I had surgery when I was 12, sometimes so badly that I'd end up in AandE with a huge swollen foot, getting sent home with ibuprofen, as if I'd go to AandE if ibuprofen could help... my knee that I pulled sprinting without warming up when I was 14 started giving out all the time, my back and neck hurt all the time as though the day before had been spent climbing a mountain carrying a heavy pack when in reality I'd done not much of anything, except hurting and complaining and banging my sore head against the nhs brick wall. I could go on listing every ache and pain that suddenly became permanent, constant agonies but I havnt the heart for it, suffice to say nothing worked anymore. I couldnt work, I couldnt go out dancing anymore, had to quit my degree, sell my motorbike,... ended up living with my mum again as I couldnt look after myself. Then I was rushed to the hospital with 'the loudest murmur' my gp had ever heard, and intense, insanity making pain in my back and arm and shoulder and chest, and there I was seen by a cardiologist, who had some life still left in his eyes who cared to ponder on the overall set of problems, how they might be connected.. and he noticed my collapsed arches (EDS feet tend to look arched until they bear weight, then they go totally flat) and put 2 and 2 together and saw what now seems blatantly obvious, in retrospect, but how could I have guessed something so rare could be the cause, I understand how it happened, the 6 years of no answers... it's rare, and hard to diagnose... but being told it was in my head so many times got under my skin, it makes me bitter knowing that all along I was right to feel that I was sick, I knew in my heart and soul that how I felt wasnt right, that my body shouldnt feel like my enemy,.. and there are no apologies to be had for all those disbelieving, critical, dismissive remarks, the endless medical professionals who cast me aside like I was wasting their time... and for all that I went through, all that I've lost, all the things I'd have done different had I known, the babies I'll never have who I grieve for as I always thought I'd be a mother (I wont take any risks with an illness that's made my life a living hell and is the dominant gene, I couldnt do what my mum does, seeing all that suffering of her children, esp in my case, with no relief to be had... I couldnt knowingly risk that.)......
There is no cure, no treatment, no lessening of the pain. Just coping, patching up each problem as it arises, unable to make solid plans, all effort going into maintaining something like a normal life through a thick haze of medication, pain and fatigue, fighting for the help I still do not get (a diagnosis means shit when no medical professionals you deal with know anything about the illness, and seem totally unwilling to learn, if it wasnt for my gp and my dentist who is very well versed in EDS only due to one previous patient, the only one he's had in 30 years of practice which means he understands vividly the many, many problems with EDS and dentistry as with all aspects of my treatment... I think I'd give up on the nhs all together.)

Here are some pictures to help you to understand how my body is..Firstly there are a couple of the scoliosis in my neck, there is curviture (scoliosis) in my lower back too (probably the cause of my fibromyalgia which is a whole miserable rant of symptoms and futility that I have not the energy for, but take note that due to the EDS the scoliosis is worsening, it was not even there in my teens) though I have no photos at the moment of my lower back as the swelling is so bad there at the moment you cannot see my spine... more xrays soon...
next is a photo of my hyperextensive fingers, all my joints are this overly extensive or worse.
Lastly the state my knees are STILL in, having hurt them standing on my tiptoes for half an hour, believe it or not. Still waiting for treatment... if there is anything that can be done, since 23rd of may... My 'urgent' referal was for July 12th, meanwhile my mum forked out nearly £200 for me to see the same doctor, privately, about a week after I hurt my knees! He seemed to think that it was another EDS complication that's just part of my life, promised to try to find me a physio (you have no idea how long and hard I've hunted for a physio in my town who is even willing to learn about the illness in order to help me, nevermind one that has even heard of it..)


The reality is that I feel that my body is falling apart, betraying me, refusing to function right for me however hard I try to do everything right, that it has taken from me my plans, so many things I love to do... gone... and I cant ever tell you what it's like, not really... and that breaks my heart.

To end this I feel I should add a nice photo, of me and my cousin's little baby, Jack, who I sat and held for a while, struggling like hell against the pain to tolerate his little kicking legs and strong wrigglyness, with everyone loitering looking concerned that I was hurting myself, or at risk of dropping him... but it was the high point of my week, and looking at this reminds me I have alot of loving, supportive family and friends... and adorable little babies in my life, and there's a hell of alot to be said for that. I feel grateful every day for everyone around me, for their dedication and courage and respect, for their endless help and patience, and for making me laugh through it all.

Love x