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