Defining lines

Never be ashamed of a scar.  It just means that you were stronger than whatever tried to hurt you. Scars are like tattoos.. just with better stories.

Growing up,  I was never the child with the neat hair or the tidiest handwriting, I wasn't the most high achieving nor was I in the group of kids who climbed out of classroom window to skive off because I couldn't understand or be bothered with the work. I was neither the athlete nor the artist, the popular that went home with hair as glorious as it was in morning registration, nor the geek that got their coat chalked and purposely shoulder barged in the corridor.

Like a lot of people I got more than my fair share of adolescent teasing, but not resulting from any stereotype. I was painfully shy but did drama, I read more books than any kid in my class but got average grades, I was on the long distance running team but hated PE, I wore glasses, had frizzy hair and wrote stories at weekends rather than knock on a friends door to hang around.
I was not quite the weird kid, not quite everyone's best friend.. and up until my diagnosis and following illness I quite liked the fact I was undefinable, non specific and amount of attention drawn to myself was limited. 

Insecurities with my body go back as far as I remember, from being the last one in my year to start my period and being nearly sixteen before I had anything that resembled a bust, to trying to control my weight and size of my backside throughout my twenties. I've been a size 8 and i've been a size 14 and I've always, and continue to be, my own worst critic.

The Incredible Power of Denial..

For today.... a few words from my husband.

It's early Febuary 2011, early evening. I'm stood in the back yard of the small terraced house me and Claire rented. The same terraced house I had proposed to her in on Christmas day, just over 12 months ago. It's five months until the wedding and Claire isn't there, she's in hospital.

Something blue

What is the funniest thing anyone ever told you?  Take a minute.  Think about it really hard.  Does it make you smile? even just a twitch at the corner of your mouth?  Yes. What about the time you really hurt yourself? A wince?  Now the most embarrassing moment, cringe. Then the hardest thing you’ve ever done, proudest achievement. Nice feeling. What about the saddest time in your life….

Everyone has a sad story to tell.  The problem being everyone thinks theirs is more so than the next one they hear.  So why should anyone want to bother listening to me?  That is what I have been saying to myself, my husband Mark, my mum and my friends for the whole of these past two years, burying each second of time in my brain like a camera recording.  Logging every detail for future reference and dissection at a later date, like a detective at the scene of a crime. And when I go to bed at night and the lights go off, the sound clicks on and the film begins.  Pause, rewind, replay.

For most women dreams of their wedding day have been ever present since we were old enough to put the table cloth over our heads and dance around our childhood homes humming 'here comes the bride'. It was the day that we too got to be a princess, our makeup and hair elegantly styled to perfection our prince at the other end of that aisle gazing back at us, eyes full of love.  Then we grow up and reality reminds us that it's not all a fairy tale.  Anyone who's planned a wedding will know it takes a lot of hard work, stress, tears and organisation, to get the day as close to that childhood fantasy as you possibly can.
As most people will be aware by now the preceding months to our wedding weren't exactly run of the mill. Whilst most brides were deciding on menus and going to food tastings at their chosen venues, I was debating the culinary offerings of York hospital catering and even then to what my limited appetite could tolerate. There was toast you could bounce of walls and roast dinners reminiscent of school dinners you could smell 3 corridors away, a far cry from the mini smoked salmon blinis and bucks fizz reception options at four star hotel venues.  Once back on the main ward my pre wedding food selection was a safely selected baked potato, salad and tinned salmon.. most days, for two weeks.

Aside from the food there was still a whole wedding to organise. Despite eye rolling from the nurses and funny looks from other colourful characters on the ward, seven weeks before my wedding I was sat upright in bed, oxygen tube in my nose, be-dongled laptop on my knee and was tap tapping emails to florists and ordering shoe stretchers off Ebay to widen a slightly too tight pair of bridesmaid shoes. All the while contending with those pitiful looks and barely veiled mournful thoughts of the other patients, 'she's kidding herself, look at the state of her she'll never be well enough'  and counteracting them defensively with my very own bold, grand statements of ''i'm getting married soon - look at this picture of my dress!''
But why would these five strangers I shared the 25feet by 15feet four walls be convinced otherwise, the evidence was pretty much stacked against me and I looked a sorrowful sight. My hair at this point was half its normal curly wiry thickness, wisps sparsely hiding terrifyingly bald sections, my face still like a beach ball and a stomach and ribcage full of nephrotic fluid to match. My legs were like tree trunks that if you pressed and would leave an imprint and felt not too dissimilar to a memory foam mattress. But what other choice did I have? Cancel the wedding and suffer through this with no end point?
To cancel a day I'd been looking forward to my whole life would have been a decision crueller than what this disease had put me through already that year. My heart was broken enough, this illness unveiled more and more of it its hideous secrets as we approached 10th June, piece by piece it was shattering every expectation of what it should have been like to be an excited bride to be. Every little moment, from not being able to wear my engagement ring due to my fingers being swollen to considering a cheap alternative to my already chosen and paid for dream wedding dress for one that may fit my grotesque body, was a little tear in a page of my storybook wedding. To this day it leaves a little hole in my heart that I didn't get to embrace the pre wedding joyfulness most do.

While other brides were worry if they'd lost enough weight to fit into their dress or if everyone has RSVP'd, all I wanted for my wedding day was my hair. You can judge me as you wish at this seemingly shallow request,  but can you imagine what it feels like being terrified your wedding photos would be a lifelong reminder of the sickness that haunted me in that moment?  That every time I opened that album I would be heartbroken once more at the image of the person staring back at me. I felt it was trivial request for all that I had already endured and so I prayed every night that it wouldn't all go and then worried all day what I was going to do with what was left!

With all brides I have known since, I smile and feel the excitement and happiness of their big day for them but I envy the innocence and carefree fulfilment of preparing for their big day. I envy the trivial wedding woes of family disagreements and disorganised suit hire companies. It's something I never had and will never get back. I'll never forget back the fact my dress was 2 sizes too big as after the fluid drained away, you saw the true toll the illness and chemotherapy had taken on my body. I'll never forget that I never really had a proper hen weekend, that despite appearances I actually still felt pretty sick and shaky and was rattling with medication on our wedding day, then for our beautiful honeymoon we'd spent a twelve months paying for postponed in year that we perhaps deserved a holiday the most.
But never for one moment despite all my worries, fears, selfish anxieties and ambiguity about the wedding taking place, did I ever doubt I would make it to this day, that this would be the best and most happiest day of my life, that despite the far from fairy story embarkation of these would be nuptials,  we would have a storybook ending and I would marry this wonderful man.

Most know that this chapter of the story has a happy ending, that thanks to some very clever (expensive agh!!) hair extensions and hairdressing wizardry to hide the areas on my head feeling the cold breeze nor than others - nobody could tell I was having more issues than Wayne Rooney before his hair transplant.

But also thanks to some very clever doctors, I was alive and well.

A little history... Part 2

On 10th February 2011 exactly 4 months to the day i was due to get married I was told my kidneys were failing, or in medical terms stage 4/5 renal failure with proliferative overlap.  This monster of a disease had silently crept past the basic medication I had been taking for just over a year and started eating slowly away at my kidneys. 4 months before my wedding I was slowly filling with fluid as my body refused to process the toxins out. 4 months before my wedding i was told i wouldn't work for a year. 4 months before my wedding i was told i had to have 6 months of a chemotherapy based treatment and my hair would fall out. 4 months before my wedding i was told there was a chance my fertility could be rapidly reduced. 4 months before my wedding i wanted to just close my eyes and go to sleep and wake up when it was all over.
After the biopsy and diagnosis i was kept in hospital to commence my first round of treatment the next day.  I was moved to a short stay ward in probably one of the oldest parts of the hospital.  It was gloomy and cluttered as i was wheeled down the corridor, i remember the dull yellow lighting giving every object and person a sickly jaundice glow. All the time thinking is this really real? Is this me lying in this bed? The infusion was a round of methylprednisolone (steroids) first then a drip and a friendly nurse with a bright blue plastic bag with 'Cytotoxic' written on it, out of the bag came a huge oversized syringe of poison... connected to the drip and pumped into me.
For 3 days after i vomited an array of rainbow colours, mostly blue.  I remember my sister standing at the bottom of my hospital bed in horror. I remember the atrocious smell of hospital food that i could not stand to touch, i remember my friend Catherine bringing me lots of bubble bath and Lush soaps for when i got home. I remember the smell of the blue palmolive shower gel in my hospital bag that the nurse put in the bath for me, a smell i can't bear to this day and will bypass in the shops. I remember Chloe, a nurse who was a friend of a colleague, but has since become a great friend of my own, coming to see me on her break and stroking my hand, battered and bruised from various attempts at getting a canula in. I remember  managing to walk to the Costa coffee in the hospital with Mark to get him a piece of lemon drizzle cake  as it was his birthday, the same evening roaring with tears knowing he was sat in the hospital cafeteria eating his dinner alone on his birthday - a thought to this day that always makes me cry, no matter that over two years have passed and lots of wounds have healed.
I was released on Wednesday 16th and taken home, i remember the lovely Lynnie coming to see me from work with a great big Orchid and Betty's Macaroon's. I remember flowers arriving from all corners of the country, work head office, aunties, old friends, i remember i had flowers on the fireplace hearth, windowsill, tables, in my bedroom. They just kept on coming, i honestly didn't realise how much people cared.
Aside from my family and Mark, one thing that recurs most amongst all these memories are those of my friends, people whom i thought were and turned out not to be, people i knew who would be there and then did so without question, people who i never thought would be first to offer help and surprised me with their kindness and then people who just thought that they should show their face once to feel better about themselves, make them feel like a good person and never bother again. The old sayings are the best and when times are tough you really do find out who your real friends are.
To Fiona, who changed her day off to sit with me while they pumped poison through my veins, painted my toenails for me afterwards then fell asleep on my bed whilst watching The Lovely Bones, who held my hand in my mums living room as i sobbed at the clumps of hair in my hands 4 weeks before the wedding.
To Catherine, for the hours spent doing jigsaw puzzles, knitting and watching your Desperate housewives box sets, for the car trips to the hospital, bringing me edible food, again for sitting through one of those nasty chemo sessions and helping me eating fruit pastilles to help take the bitter taste out of my mouth.
To Kirsty, for the cups of tea (i still have the meercat mug and coaster!), the bandana to cover up my ever increasingly baldy head and for the spins around the hospital in my wheelchair to cheer me up!
To my lovely ladies from Links, Jodie, Hannah, Lynnie. I couldn't wish for better colleagues.
To fiona, Dave and a very little Lyra at the time- thanks for the tea and cake and Lyra smiles!
To Emily and Ben - the tulips lasted for weeks!
To Becky and the Kids for restoring some normality and treating me like a human
I could go on forever to the people that i owe a debt too, i'm sorry if you didn't get a mention this time but i'm sure there'll be lots of opportunity for a mention, i'm afraid there's a lot of backlog in this brain of mine... haha stay tuned..........

A little history..... Part 1

I apologise in advance to all those reading this that have heard the events time and time again or were unfortunate to see it all first hand, but i thought it important to fill in the gaps for those that are completely new to my story and how things came to be.
I was diagnosed in December 2009 with MCTD (mixed connective tissue disease) and borderline Lupus (SLE).  The previous 6 months to a year before hand had been the turning point for me starting to realise that something in my body just wasn't working right, but in hindsight i can track back odd little symptoms way back to 2006.  Unexplained aches and pains, sore patches of skin that would appear and disappear that i thought was psoriasis, stomach problems that i thought was a touch of IBS, and most significantly joint pain and problems.  Gradually the issues with my joints got worse, there'd be times when i couldn't bend my fingers or wrist or straighten my arm without red hot pain shooting through it and Mark (my now lovely husband - hello darling !) would have to dress me... this was 2007.
Doctors poo poo'd me off with pain killers and anti inflammatories saying i may have a touch of arthritis.  I carried on regardless and the symptoms gradually increased, more pain killers and more shrugging shoulders at the GP surgery.
As 2009 dawned so did the awful fatigue, a feeling beyond tired it's like a black cloak that knocks you over, your hands and legs shake, you feel sick and there's nothing you can do but go to bed and hope it goes away.  Then the fever and chills kicked in, again it would put me in bed shivering like i had the flu yet sweating unbelievable.. in the morning i'd sometimes feel better, refreshed but the rash had started to leave its mark, blotchy little butterfly kisses dotting my neckline after the fevers.
The final straw came in late November that year, after the rash had become hugely more apparent, spread across my neck and down my arms, and a near collapse at work I picked up the phone and requested an emergency appointment that day.   By a strange coincidence the only emergency appointment left was with a GP whom i later found out had a history working in Rheumatology before going into general practice.  She was sympathetic and astute to the symptoms i was experiencing and demanded a full run of blood tests.  3 weeks later i was sat in the same room again on my lunch break expecting her to tell me i had hormone problems or a thyroid issue.  When she mentioned the word Lupus i had absolutely no idea the seriousness of what she meant, "right ok" i said. She printed a lot of information off looked at me with sad eyes and told me i was being referred to the hospital for more tests.  I returned to work and went about my business, i made the calls to Mark, Mum and Dad and carried on... Now i wish i could go back and scream at 2009 claire and say "DO YOU KNOW HOW SERIOUS THIS IS!" but in truth i didn't really mind, i'd heard of it and knew the basics but didn't quite really understand.  Everyone else seemed to be more worried than me and to this day I honestly cannot explain my complacency, i wasn't in denial and i wasn't trying to be brave i just.. was.
After visits to rheumatology i was fired up with a cortisone injection to help my joints and given a prescription for hydroxychloroquine, the basic bread and butter of MCTD/lupus medications and things seemed relatively stable for over a year.
Late January 2011 and 5 months before my wedding i started to feel very sick, puffy face, eyes, a cough that would not shift and despite being on a new years / pre wedding countdown diet i had somehow put on 7lbs.
NEXT Just a blur:
Alarms bells, doctors, urine test, a flapping GP, something about kidneys, a phone call to the hospital, packed off in a taxi to the hospital, more blood tests, a long wait, lots of serious faces, more stuff about kidney problems, kidneys not working properly, lupus antibodies are a perhaps attacking, must have kidney biopsy to confirm, one weeks wait, legs and stomach start to swell with fluid, start being sick, go for biopsy, can't have biopsy blood pressure is soaring, medication for a week to bring it down come back next week for biopsy, strapped to a table, big clamp on my back, kidney biopsy taken, lying flat still for 6 hours, kidney biopsy comes back, brand new doctor comes in with serious face, think i was on my own? can't remember, kidneys are failing, we're keeping you in to stabilise you, you've got to have 6 months of a chemo based therapy or you're going to be in big trouble.................. pause.