Apologies in advance for any rubbish spelling and grammar and general waffly-ness, having a bad day today and feel like I’ve been hit by a speeding double decker bus thanks to my appointment with the hip orthopaedic specialists yesterday. More about that at a later date. :^)
My name is Fiona-Jane Kelly and I have Ehlers-Danlos Syndrome, a connective tissue disorder and a load of associated health issues. I was only diagnosed on 13th Feb 2008 when I was 27 years old- up until that point I was a hypochondriac making everything up, apparently. I was told it so often that by my late childhood I totally believed that all my pains etc were in my head and that I was crazy. So when any new symptoms cropped up I just ignored them…. Including the intermittent tachycardia that started in early secondary school and the bilateral sciatica that started when I was 14. I feel sorry for every dentist that has treated me since I was 12 (and started having injections rather than the gas) - due to my EDS the injection has never worked and I feel the drill as if no anaesthetic is in my system. I assumed that this was normal, and that it was like this for everyone (after all, I’d been told that my pain and dislocations were ‘normal and everyone has them to a certain degree’). My face would go numb but the tooth wouldn’t, and I think they could see the pain in my eyes as I never, ever saw the same dentist twice. Every single dentist left the medical practice after treating me. I called it the ‘Kelly curse’. Unsurprisingly I now can’t get a dentist for love or money. whenever I need treatment I have to go to University College Hospital for it and have a general anaesthetic, even though the pain of drilling is not actually that bad, the injection hurts more, so I’m quite happy to have dental treatment without the anaesthetic (as I’ve had enough fillings and extractions without it working and coped completely fine). But dentists are less happy. LOL! How on earth did the poor things cope before anaesthetic was discovered??! I’m so lucky that my teeth are not too bad, even though I have EDS.
Being misdiagnosed for so long does have some advantages though, it’s made me ultra self sufficient and independent, I’ve developed a pain threshold that’s really high, I’m usually able to fix all my dislocations without needing any help, and I can read and understand big medical words as I’ve been reading medical textbooks since early childhood (to learn how my joints are supposed to be aligned so I could fix them). See, every bad thing in life has a good side ;^)
But that all changed on the 13th Feb 2008 when I was finally diagnosed and told by a proper qualified medical consultant that was not crazy, ALL my symptoms are real and although the condition is incurable and relatively untreatable, many of the symptoms could be treated with a fair degree of success. They’d never go away but it was possible to make them easier to live with. HOORAY!!!! :^D And was told my gastro symptoms are severe (I thought I had a normal gut) and was sent to a neurogastroenterologist at St Barts hospital who has literally changed my life. I never realised how painful and dysfunctional my whole gut was until they started me on treatment and made it work better! Several other consultants in various areas of speciality were gradually added and they all made a huge improvement to my quality of life. I’ve gone from hating tablets and refusing to even take vitamins and paracetamol to taking so many pills I rattle. Each one added with the proviso that if they didn’t work and improve things I could stop them….. once I’d felt the massive improvement each made I made the wise decision to keep taking them. ;^)
Being finally diagnosed was absolutely fantastic but came with its own problems. I now couldn’t carry on living my life ignoring it all as I now knew the damage I could possibly cause myself. I was a circus performer and had worked for years and years and years to make myself strong enough (and skilled enough) to do handbalance acts, contortion, partner balance etc. being in the circus was my secret childhood dream (the one you don’t tell anyone about as you think it’s just so farfetched it won’t happen) that I finally made possible in 2005. Even when I was newly diagnosed, the acts were mostly still doable as you can tailor them to cope with the fact I lost the ability to take weight through my left hand due to a bad injury etc…. But the manual labour and non-stop life of the circus was just not something I could physically do anymore. Now I know that the tiredness is proper chronic fatigue and not ‘laziness that needs to be worked through’. I got so exhausted by the end of 2007 that my gut slowed down to an almost stop and I couldn’t eat for nearly 2 months and ended up pretty sick because of it. I’d kill myself if I continued living that life. Problem was, it was the ONLY thing I wanted to do with my life, I thought that this was what I wanted to do with the rest of my life, that I’d finally found my niche in this world. Circus was my entire life. When I realised I could no longer live that life I was devastated, completely devastated. Felt like a great ragged hole had been ripped into my soul and I had a dirty great wound that threatened to engulf my entire existence. I know it sounds like I’m over-dramatising it, but that’s just what it felt like. And it HURT. Real bad. My entire life was gone, that was just what it felt like and I was a total loss what to do. Anything that reminded me of the circus triggered this agony in my heart- the smell of popcorn, similar music, the sight of canvas, circus or acrobatic acts on TV…..
It’s taken me a very long time to grieve for my old life and gradually begin to carve myself a new one. I can now enjoy circus again, but this time only from the audience. But that’s ok. The wound in my soul is still there, and I think it always will be, but it’s now covered over with a thick skin so I don’t feel the pain so bad. Some days there’s no pain from it all, but I can still feel it there. I’m now realising in some ways it was a blessing to have to change my life- I now have the chance to do all the other things I’d not been able to properly do since childhood. I now can give my geriatric kitty cat, tiger, all the fuss she wants, I’ve re-discovered my love of knitting, taught myself how to crochet and make little woollen animals that my nephew just adores, I can bake, sew, read, get more involved with the church and I’m gonna be starting to learn to play the clarinet in the summer. I finally feel like I have a life again, and I’m actually far more content in this life than I was in the circus, I never thought I would be so it’s taken me completely by surprise. I always knew something was wrong and it was niggling in the back of my mind. But now that niggly feeling has vanished, hopefully for good. I never realised how much it was bothering me until it went and it felt like a mighty weight had been lifted from my shoulders and I could finally breathe.
I’m about 3 years post diagnosis now and I’m finally starting to feel more like my old, cheeky self. Moving out into my own ground floor flat helped loads, I kinda liked living with my parents as I had support there all the time and if I fell I knew there’d be someone to help me…. but stuff was getting bad and I just had to get out as it wasn’t safe for me to be in that house anymore. I was immensely lucky that I got a housing association flat as soon as I did- I’d been the successful bidder, signed all the contracts and paperwork and moved in 3 years earlier that I was predicted. I still can’t quite believe I was the successful bidder on this flat as it’s absolutely perfect, has everything I wanted even the teeny garden so I can grow stuff once I’m well enough, a garden not too big that I can’t manage it too. Perfect size for little me! And the best thing…. no stairs! YAY- no more falling down them on a nightly basis! After a brief argument with the housing association (about people parking in the disabled spaces when they weren’t supposed to) and I now have a disabled space right outside my front door. Result!
I’m also getting the home help I’ve needed for a while now- get seen by 2 wonderful community physiotherapists who make each session fun (rather than just painful and boring), a lovely Occupational Therapist who’s been super helpful and getting me lots of railings and aids for my flat and even helps me tailor my cooking skills to cope with my disability so I can gradually learn how to cook again. And she’s contacted Social Services for me so I can start the process to get a carer. Hooray! And being assessed for a lightweight wheelchair so I can still get around on days when I can’t stand or walk so I don’t have to crawl! That’s a rather novel concept. LOL! ;^D
My year’s resolution was to let people help me (as I naturally don’t like it and want to ferociously fight against any help) and I have to admit that life is much more enjoyable already so it should be a great year! :^D