Almost 15 years ago my body started to change. I'd already started puberty and in fact was probably almost finished. But these changes started to disable me. My muscles weakened, my joints became painful, I felt exhausted. My spine started to curve, I struggled to digest food and seemed to always have infections. To begin with my GP thought it was a virus, then after a few months I was referred to the hospital for further testing. Within the first 5 years alone I was told I could have cancer, CJD, MND, prolapsed disks and a brain tumour to name just a few. And I was actually diagnosed with ME, Fibro and Dystonia in that period. I've seen probably 100's of Dr's, Neurologists, Urologists, Psychologists, Cardiologists, Haematologists, Neurosurgeons, Gastroenterologists, Anaesthetists (ICU), Psychiatrists, Gynaecologists, Pulmonologists and once even saw a Paediatrician when I was so critically ill all my vein's had collapsed and they urgently needed to get a line into my smallest veins.  But on Thursday 23rd March 2012 I received a diagnosis that explains everything. I have <a href="">Ehlers–Danlos syndrome</a>

People keep asking me if I'm pleased or relieved or happy and yes, I guess in a way I'm a little of each. But a part of me is angry. Really. Fucking. Angry. Not because they didn't diagnose my EDS when I first started showing symptoms all those years ago. Though had they, I may not have had over 20 ICU admissions for respiratory failure, I may be in less pain and I may not have been accused of being mentally ill. I'm angry that doctors and the medical profession as a whole have ruled my life for 13 years. Let me explain a little ..

In 2002 my mum moved away to Newcastle and I moved into a homeless hostel. I'd been in and out of hospital for the whole year previously having scans and tests, seeing different doctors. But they couldn't find anything. My brain and spine were both clean and the neurologist I was under at Addenbrookes hospital was sure there was nothing to find. It was my Neuro who said I had ME and suggested I could be managed by my GP but gave me a referral to Prof Wessley's team in London. I remember going with my sister in my recently received NHS/red cross wheelchair and seeing a registrar from Wessley's team. We talked for over an hour, I walked for him, he did an examination and he told me at the end I didn't have ME. The bit that scared me though, was his remarks about my mental health and the 'rules' he suggested I followed. He told me that I should have another round of investigations from the Neuro team at Addenbrookes but that once they'd come back negative I would have to accept that I had a mental illness, Somatoform Disorder.  It was his 'suggestions' for my life style that really changed me though. He told me that I needed to adjust my thinking totally, that if I chose to adopt the 'disabled lifestyle' doctors would always think I was making my self ill. A few of his suggestions included not using a wheelchair or walking aids, not spending time with any disabled people, not using the internet to communicate with disabled people, ignoring all my symptoms and going on with college no matter what and no longer requesting to see other doctors. It didn't just stop there, he talked about how everything made me look like I was faking, he told me that asking to see other doctors would make it look like I was hoping one of them would diagnose something and that spending time with other disabled people would make it look like I was learning 'how to be disabled'. The letter this doctor wrote about me was 4 pages long and it sparked the beginning of my battle against a mental health diagnosis. It also sparked to battle against doctors who believed entirely that I was making this all up.

You might think these 'rules' are stupid and that doctors don't really behave or think like that, but you'd be so terribly wrong. A few years later, I visited a neurologist with a good friend in a different part of the UK. I went in to her appointment with her (in my manual wheelchair) to support her. I was shocked and disgusted when  within moments of the consultation beginning his attention turned to me and what I was doing in a wheelchair. He was so horribly rude that my friend was incapable of driving for almost an hour. And it didn't stop there, we were both astounded when his report came through and the first paragraph was about the friend she'd brought with her. It was made very clear that her illness was taken less seriously because the support network she had included disabled people.

Over the years the pressure to never give the doctors any more ammunition was huge. Both my long term partners had impairments and while most people would lean on their partners for support at hospital appointments, I was unable to. I'd had to go alone, leave them in the car park and from time to time I'd even ask them to walk to appointments with me so people wouldn't see them in wheelchairs.

My whole life became compartmentalised, there were things doctors could know about me, and things they couldn't. They could know that I walked with sticks from time to time but not that I used wheelchairs, that I had partners but not that they were disabled, they could know that I had an interest in politics but not that it was the politics of disabled people that I worked in. They could never see me without make up, nice clothes, clean hair, shaved legs, even if I actually wasn't well enough to be spending hours looking after my self, letting them see me 'uncared for' (as they so beautifully put it) would only add to the notion that I must be mentally unstable.

Sadly, it didn't stop with the medical profession. There were some people in my life who were just as unsure about my illness as the doctors and took it apon them selves to make their position clear. I had disgusting e mails from friends of friends who couldn't believe I was faking it when their friend really had 'whatever' impairment and were really unwell. There were people who decided they should save me from my self and threatened to call my GP in a bid to get me sectioned. And then there were the people who just never really believed me, who never really supported me, who wouldn't talk about it or would drop the occasional comment that made their thoughts on the matter clear. Some of them I didn't really know, some of them were friends who I'd trusted with my deepest fears and who took advantage of that. And some are genuinely  sorry they put me through that.

The thing I am really disappointed about though, is the way I reacted to the treatment I received from medics. It's like telling a child, over and over, 'that person is fat' whilst pointing at random people on the street. Eventually, that child see's fat people all over the place. I stated to question everyone, I started identifying all the things the doctors pointed out in me, in other people. I became judgmental and cruel towards other people with undiagnosed impairments or impairments that are debated by the medical profession. Now I'm not a child. As an adult, I should have known better. As an adult who felt persecuted not just by doctors and the medical profession, but had been so deeply hurt by people questioning my own impairment/mental health, I'm pretty disgusted with my own behaviour.

In the last 5 years, my impairment has developed and I now struggle with life threatening infections and recurrent respiratory arrests. At my worst, I found my self in ICU up to every 6 weeks and would often be intubated for weeks at a time. I remember my worst admission in little snippets of flash backs. I went in with a kidney infection. After a couple of days I stopped breathing and spent a week in ICU. I'd only been back on the ward a couple of days when my kidneys failed and I ended up in a coma for 3 days. A few weeks later, having had to come off all medications and therefor going through morphine withdrawal, my lungs slowly filled with fluid. Eventually I crashed and had to be resuscitated. I was intubated and taken to ICU. I was told I was in heart failure when they woke me the next morning. 24h later they attempted to take the tube out. I managed about 8 hours before I crashed again and I had to be reintubated. I didn't wake for 3 days and my life hung in the balance as my heart developed pulmonary hypertension. When I finally started to come round, the pulmonary hypertension was severe and my blood pressure spiked at 222/200. The ICU consultant had been asked to come see me urgently and I remember him standing over me, telling me I was doing this to my self. He said I needed to calm my self down. I couldn't answer back, and trust me when I tell you I was drugged up to the eyeballs. I was not anxious or panicked and even if I was, a slight rise in BP is all you would expect! When you have conversion disorder on your notes though, everything is your fault. You're always to blame. Always.

I've actually never had a diagnosis of anything that's stuck. I had a diagnosis of ME at the very start of my impairment and that's pretty much it (bar little things, like high blood pressure or Asthma). But I have had a few things that hung around while doctors debated if I had it or not, conversion/somatoform being one but Muscular Dystrophy was the other. Whilst I never had a specific and final diagnosis of this, the Mitochondrial type I was suspected to have has over 900 forms so even though I was tested for the 9 most common they couldn't real rule it out. For the last couple of years I've been using MD when people ask what my impairment is, simply because it's the closest thing I've had to a diagnosis and to be perfectly honest I couldn't face trying to explain conversion disorder every time I needed to talk about my physical health problems.

I'm not sure where my disease of the mental health diagnosis came from, or if I just knew somewhere I didn't have conversion, but I can't get over the ignorance the doctors showed towards me and the possibility of my having a conversion disorder. Most of the medics clearly had no idea what CD actually is, they would constantly tell me I was doing it my self, put the blame onto me. From time to time someone would be sure to let me know that they knew the difference between my faking or making it up (Munchhausen/malingering)  and CD when you have absolutely no control over the symptoms your brain is creating. They were few and far between though, I was treated like a second class citizen by so many of the medical staff. I was almost never given physio during my stays so that I would maintain what strength I had, I was often told my breathing wouldn't be as bad if I would just give my self a good talking to or I would be told by doctors there was no point doing tests/treatments because there was nothing wrong with me. I've always felt pretty terrible that I fought the mental health diagnosis so fiercely, I know people with all kinds of mental health problems and I always felt had there been a really specific reason why they were so sure I had CD I would have been far more open to the idea. But telling me over and over that my symptoms were medically unexplained or suggesting that I had been abused by my parents were absolutely not going to assure me this was what I had.

Thirteen years is a long time. It's the whole of my adult life. And I've been through all kinds of emotions in that time. Severe depression, terrible guilt, horrid fear to name just a few. Thankfully, the last 3 or 4 years I've found a really lovely peace about the whole thing. Those with a diagnosis probably don't realise just what they gain from that. Simply knowing what you have gives explanations for things, gives doctors ideas when treating you, helps you find support from people with the same impairment and a peace of mind that while you might be dealing with something difficult, your not dying of a terrible disease. Living without a diagnosis is hard work. And that's not just from a medical point of view. The truth is that it has a huge effect on your friends and family too, they don't know what to expect, what to tell people, how to deal with difficult symptoms. It's hard for partners also, when you've no idea how life might pan out with this impairment. And it's horrid when people ask you what causes, say, your mobility issues or when you have to fill in a form like DLA. But I've been doing this for a long time now, I've learned not to expect things, to make it clear to friends that I do my best, to explain to my family what little bits I do know. I fill in forms with every ounce of detail I have, get letters from every doctor I trust and keep my fingers crossed that my not having a name won't hinder my application. I'd reached a point though, where I was comfortable saying I had no idea, where I could be happy in my own skin without constantly worrying about the next time I would need to give that level of information to someone. Even when I became a foster parent and my GP had to write a letter, she couldn't say I had MD without a full diagnosis, but she specifically didn't write conversion disorder either. She wrote that I had medically unexplained symptoms and that was fine. At that time, that was a factual statement. The shame I would have once felt at the thought of that information being shared with people I knew, as well as total strangers was gone. Perhaps the anxiety at their reaction still remains though, I'm not sure that will ever leave after the things I've been subjected to.

There have been so many emotions and thoughts over the past week. The initial elation that I finally had answers, a doctor who knew how to help me and could see I'd been pretty poorly treated by Addenbrookes only lasted a day before it faded. It's been replaced by the frustration I feel for the life I handed over to medics, for the person it turned me into and for the way people treat you when you don't fit into a box.

I'm not getting my hopes up that this will change everything. I can't imagine that my doctors at Addenbrookes will change their opinions of me, I am sure I will always face difficulties when it comes to my medical history. But I am hopeful. Hopeful that I won't ever compromise my self the way I have over the past 13 years, hopeful I will learn to ignore other peoples expectations, hopeful that my *friends* will learn to stop passing judgment on me, hopeful I will learn to do the same and hopeful that I will learn to manage my EDS.

Thank you to everyone who's stuck by me for the last 13 years. To all the people who listened without passing judgment, who came to hospital appointments, who held my hand in ICU and who I know will be around for the next 13 years. You're pretty awesome :)

So what do I do?

Ok, firstly .. hello! Secondly .. I think many of you know me but for those who don't here is a little bit of info. I live in Cambridge, I'm 26 & I'm going back to uni in September to re-do the last year of my photography degree. I have been involved in DAN for many years now and consider one of my passions to be politics & disability rights. Because of my views I have recently been wondering about the equipment I need & how to get it. Dealing with an impairment that changes fairly rapidly I often find my self needing new equipment. As most of you will know, access to equipment is very limited & the things that work the best are simply out of reach. I am now needing some kind of communication device (Minspeak AAC) & the one I feel would work the best for me is over £7000. The NHS have made it very clear I will never receive this from them & their communication aid comes in the form of an alphabet on A4 paper and laminated. This will just never work, I couldn't use the phone, I would struggle with dyslexia & the people I want to communicate with may not be able to put together a long sentence. Being 26 and not having a specific diagnosis of my impairment makes applying to charities for the money. Not to mention just how much I hate having to do that. All the forms & there right to know every detail of my life. So what else do I have? ... A friend suggested doing some things where friends & families would be encouraged to give me money, as well as applying to charities at the same time. I hate the idea, but do I have a choice? So my question is .. what would you do? Accept what the NHS will give me & learn to live with it? Use charities & just deal with what comes with that .. or allow/ encourage friends & family to give me money as well? All help would be appreciated!

colour of thought

Sharing her secrets..

Hey guys,

How is everyone? I'm still in hospital, 3 weeks now, and there isn't much sign of my being out by Easter!! Es has been coming as mucha s she can, my dad, Flash & Mike, Katie, Laura & Emma too. The Jen's sent an amazing VD selection, as did Flash & Mike and my dad .. I've ordered Grey's Anatomy & Medium too .. I'm getting through 100's!!

The other thing, actually, is a web site I found written by a woman called Seema. I don't remember how I got there but I can't stop reading it .. that's pretty amazing for me! She writes about her life, her education, family & different kinds of relationships etc. There's some pretty deep stuff actually, she's so honest, frank on occation, yet you feel connected to her, she's so warm. The topics (don't want to say stories because they're true..) she covers are thing most can relate to, sympothise with, and they are so well written. I think you should all at least check it out ( because I'd love to know what you make of it.
There are a few ways to 'follow' her, on Twitted she is Seema Soni & the same on FaceBook. You can find her on here, (it's an RSS though & I can't remember how it works!!) or on her website seemas Secrets. I hope you enjoy her writing as much as I do, do leave me a comment if you check her out.

I'll try & do a bit more of an informtive update at some point .. sick of talking about it, thinking about it, hearing about it .. you get my point!!

Let me know how you all are, I miss you!! x x

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colour of thought

Intending to moan

So I got rushed in to hospital on Thursday (or Wednesday?). I was being treated for a chest infection at home but my lungs were filling up and I couldn't speak. A dr had been out two days before and suggested hospital but I wantted to at least 24h with the antibiotics. She promised a visit the next day, only no-one turned up. Es chased them up on the next morning and she came just after 12pm. As soon as she walked in she freaked I'd been left 48hs and asked to borrow the phone. I thought she'd call the surgery but she dialed 999. Didn't take them long and they were really kind but my sats were under 85 and all I wanted to do was cry.
My carer called Es who got on the bus, no real idea how long that took because the ambulence went blues & twos and I had a team of Drs waiting at the door. Taken through to reasus they started pulling clothes off and putting lines in. I didn't realize just how poorly I was until them, my heart rate was in the 200's & my sats were under 70 at points. About that time was the first time I've ever really felt like I was slipping away. Don't get me wrong, I've been scared for my life before but I've never felt it actually slipping like that.
After quite a lot of meds I started to feel a bit better and I managed to sit up. Es went home to get some bits & started to get some rest. They were debating ICU & the respiratory wards HDU but my blood gas (blood taken directly from the artery in your wrist or groin) wasn't too bad so when the ICU team came they said I could go to the ward. Only all of a suddern my sats plumeted and stopped breathing. They bagged me for a bit and I started again, they always refuse to tube me due to my physical imparment, they guess I'd last 2/3 days before I'd become vent dependent.
The ICU team came back down, did a couple of more blood gasses, it would be fair to say they were a little on the low side, and rushed me off to the CT scanner to look for a clot on my lungs. I've never seen Drs look at me quite like that before, we couldn't go to the scanner until we had a crash team and a call from the deparent that it could be done the moment I came in.
We headed back to reasus after because I was too unstable to go in a lift without a team of people each with a 'life kit' (genuinly no idea what they are).
Eventually I got up to ICU and this blur of people started pulling things and hooking me up to stuff. The junior Dr did my Art Line (same as a blood gas but they sew it in) with no local, them digging around with a 3inch needel wasn't too bad but her sewing it in was pretty horrific. But as soon as that was done they put me on the NIVentelator and I began to calm down. Having the strain and effort of breathing taken over, even when it feels a little like your being suffecated, is some kind of elation I just couldn't pit into words.
No one sleeps in ICU because there is just too much going on, alarms and constant treatment makes it almost impossible, they don't even turn the lights down. The rest of the night was a bit of a blur really, I do remember the Jr Dr telling me I had a 'little bit of phumonia' & me wonder what a big bit would be considering a 'little' had landed me in ICU.

I did feel a lot better in the morning, specially after the physio (pat, no joke, LOL) go me to vomit almost 300mils of sputem. At about 4/5 that evening I was moved down to the respiratory HDU and although I was still oxygen dependent I felt so so much better. I had two lovely 'bay buddies' Deny & Corrinder, C & I will definatly stay in touch, I was even able to talk. Then with in 12hs I couldn't stop throwing up and I was moved into a side ward after my cultures showed MRSA :(

This whole unit is new (what most of us would consider porta-cabbins) so there is no TV & I suspect I am the youngest person here by 10yrs .. well I know I am cos Corrin is 34. The nurses are kind but they don't have time to do their jobs let alone give a sobbing cripple a hug. I know this will sound stupid, but despite having a few arguments with my body before I don't often feel as unwell as I probably should- either that or almost constant infections for years leaves me feeling no different. But this time I feel so ill. My chest is still full of shit I'm finding hard to clear, my temp is up and down quicker than my food so I can't sleep or get comfy, the MRAS means no one can ce in with out barrier nursing, repeat blood gasses mean my arms are brused & swollen, ugh ... just have so little energy. I want to see people to cheer me up but just talking to Es is whiping me out.

I'm sorry to go on, just feel all out of my fighting spirit at the moment :,-(

I'm lucky I always bounce back, I'm lucky I don't always feel this ill, I'm lucky I have friends who care & who make so much effort to come and see me, I'm lucky I have reasons to stay well & active .. I could go on.

Ok, I'm going to give up moaning and try and do some recovering! I'll be ok, always. Sometimes I guess it will just be a longer road that others.

Love to you all x

p.s I thought I would treat you to a photo of the sal I am stairing at & Borris the finger puppet .. My sister brought one for me & one for Corrin. Enjoy!

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Hey everyone,

A very happy new year to you all!

My name is Imogen, I live in Cambridge UK. I was born female and am happy with my body but consider my self Gender Queer. I came out as gay at 14 (nearly wrote 144!!) and have been with my partner for a number of years now.

I am a photography student in Cambridge and I am just about to go into the final term of my 3rd year. I have covered quite a few topics over the last three years including self harm, mental health, eating disorders and physical disability. You can see some of my work here: Flickr or my own web site here: Indigo Clouds Photography

This term I want to do a project surrounding 'Gender Queer' and 'Transsexuality'. So I am looking for people who might want to be involved in the project. I will be hoping to photograph a few aspects of the topic including things like: following someone through aspects of their transition, photographing people with their families, following people to Dr's appointments, visiting and photographing both home & work, doing some studio shots (including partners, with/with out make up, in underwear etc) .. For helping me out you would get a copy of your images on a disk, a copy of your favorite 5 printed up to A2 and many many thank yous from me!

Having dealt with subjects that are often unknown to family members or friends I am more than happy for people to remain anonymous. As you can see from my self harm images most participants don't have their face in the images. I would like for some of those who wish to take part to be able to have their face in the images, purely due to the nature of the project.

I don't have any money to pay those who take part but I could help with travel costs if people are on a low income and I am more than happy to provide accommodation in the form of the sofa in my front room!

Please feel free to contact me with questions, anything you might like to know. Also, feel free to pass this post onto friends who might not see it on LJ or even to other communities. I would also like people to take part in a survey that will be part of the final project so if you would like to receive that you can get in touch.

Finally, during previous projects people have contacted me suggesting that aspects of the project might be highlighting the 'wrong' parts of the issues. I warmly welcome this contact and can only understand the subject to a point with out this source of information.

My contact details:

E mail -
Mobile - 0754 99 33 030
LJ - New_Kinda_Freak

Thank you for reading,
Kind Regards,

Imogen May
  • Current Mood

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When I found out about Jessie (or Lynn as she's known in the papers) I was at uni putting up my first term degree show. Looking of photos of me during my chest infection/asthma attack from the first three weeks of term. All of a sudden the whole thing felt so pointless, so insignificant.

I couldn't control my reaction and I'm so grateful Laura (my wonderful and closest friend at uni) was there to hold me whilst I read words I knew would come one day but didn't expect to find. I didn't want other class mates to find out really, it was a big day for all of us really, but news seen spread and I couldn't have received more support. My tutor told me not to hang and to go home, but I knew Jessie wouldn't want that and to be honest the distraction was a blessing.

Until Friday afternoon I had Keeley here, although close friend of Jessie's, and it couldn't have some at a better time. I'm not sure what I would have done with out her here.

After Keeley left today I couldn't help but bottom out. All of a sudden I felt guilty for all the smiles and laughter. I felt I didn't have the right to call her a friend. I felt like some of those who are also mourning the loss of Jessie have pissed on lamp posts to make territory at a closer or better friend.

I'd started sending Jessie an e mail every night entitled 'Jessie Love' where I came up with inventive ways to photograph my Jessie lovin'. I called once a week to leave voice messages on her mobile and did my best to message her on Facebook or LJ as much as possible. After my time in intensive care Jessie and I suddenly had an even closer bond, mostly because it's something you can't really understand until you have been there.

She didn't get my last two e mails and I feel cheated out of a way to say goodbye, to tell her how much I loved her, how grateful I was for her friendship and how much every tiny bit of contact meant.

When Paul died, a very close friend who was only 22, I remember exactly where I was. Watching the TV, Fran on my left and Ali sat on the floor in front of the radiator all eating spag-bol. I couldn't understand that whilst Matt's words and my world had started running in slow motion, was still running at the same speed. I couldn't understand how I could carry on putting food in my mouth or why the rest of the world hadn't stopped, not for even a second.

Tonight all kinds of nothingness has been floating around my head. The pain in my bladder is becoming more and more intolerable, my kidneys and my back too. Despite a morphine increase a few days ago I still struggle to move even the smallest amount with out needing to rest over and over whilst I suck up the pain. I don't know what to do with my self. I'm going to turn out the lights again for the umpteenth time and hoping that I don't continue to cry my self to sleep. I'm meeting Es at 11am for a little Christmas shopping and lunch but I don't know how I'm going to manage it. I know we had ideas as to how her move to Cambridge would change our relationship but I don't think either of us expected it to result in such regular disappointment and heart ache.

I'm planning to give my self a day or two to chill out before I get back to my dissertation and photography projects.

I've just seen as LJ entry from Jessie's closest friend alerting us to a woman called Joey who's not only made her Facebook photo and LJ user icon Jessie's face, but she's got in touch with the police and given them access to Jessie's prive LJ entrys!!!!!!! Tonight I'd do anything to take out all this rage on her face .. AAAAARRRRRRRRRRGGGGGGGGGGHHHHHHHHHHHHHHHHHHHH!!

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I realize this is one of those things where some may not like my asking this but i'm a little desperate! I managed to get a PC laptop but now need to try and find some softwear.

my last infection left me with serious problems using my right hand/arm (my good side, grrr)and that's incluing typing. I got a second hand PC laptop so I could use dragon but I can't find anyone who's willing to give me a copy. If I can't get hold of it I will forced to type my dissertation on a bloody on-screen keyboard!

There are a few other bits I could do with if people have them but they are far less important. They include, Read and Write Gold, Inspiration, photoshop and so on ..

So if anyone can help me out i would be so greatful. I am so behind on my uni work after being sick for so long, I am struggling to catch up.

Back with a bigger and better updates soon!