thursday turd-day

Absolutely exhausted so here's todays post in the format of my boring lupie day ( well hey it's a break from the drivelly moany stuff - I've got lupus, I feel tired, blah blah blah!)

Woke up at 7.38am despite the opportunity to lie in til 8.15 (flexi hr day at work)... somebody in the night clearly ripped me out of bed, threw me downstairs, made me run on a treadmill for an hour and punched me in the mouth. So as per usual woke up feeling like a bloody superstar with a burning cold sore - feel long hot shower is the only solution, did not

Don't tell me you're tired

Today I fear I may fail in my attempts to give you anything interesting to read. I'm on day four of five, not a regular occurrence, but it means today I have to dig into the depths of my energy reserves.
Battery levels are officially on low and the world is like that dreary slow voice you heard in your  headphones when your Walkman (for those that are old enough to remember) needed new AA's.
So today is a day of swamp walking (dead legs), fish bowl vision and speech that makes Lindsay Lohan look sober.
The main worry is the concentration, the fear of making a mistake and looking like an idiot. I have to just pray for the best and hope my lovely colleagues don't think i'm a grump.
I wish somebody could walk just one day in my shoes and see how difficult every step I take is and at the same time not wishing this selfish, consuming disease on anyone. I honestly think sometimes that whilst sympathetic, not many people actually understand how hard it is for me to work and function like everyone else. I put twice as much effort into everything I do just to be at the same level and speed, and to avoid massively the perception that I should be given an easier ride because of my illness.
Ultimately I don't have to justify my tiredness, I choose to explain as a reminder to why i'm going at a snails pace that day. So i'm going cut myself some slack, to work in management in a busy shop and stand on my feet 9 hours a day whilst having lupus, is bloody legendary. In the words of the long suffering SuperMark ( my husband).. "Lupus...only proper hard bastards get it."
You can tell he works in advertising..

Lucky me...

So with my 3rd day at work in row upon me, I wake with the knowledge this is where the battle for the week begins. It comes with the heavy eyes, the lead like legs and a mood that matches the peeing rain outside, but up I get and on with the day I go safe in the knowledge, I consider myself a very lucky person in the grand scheme of things.
I have wonderful husband, rock solid marriage, a great family and a job I enjoy. Chronic illness and experience of life and death situations give you the power of perspective and the advantage of being able to cherish the important things in life.
As the fates would have it i'm perhaps not the luckiest person in the smaller aspects of everyday life, the universes reminder that just because you live with an illness you're not automatically immune or given a break from the absurdly annoying ticks that irritate your daily routine. Like, for example, despite many a morning greeting our lovely neighbours on the driveway in rain sleet or snow as I venture to work, it is this morning that my fit and healthy husband is offered a lift up the road and most of the way to the train station by our retired neighbours next door but one.. And it's me 30 minutes later speed walking in the freezing rain to my pre work dentist appointment with Mark's jolly post oap joy ride words ringing in my ears "don't forget the brolly love, it is pretty nasty out"
That has pretty much set the tone for the day. The dentist was somehow running 15mins late on her 2nd appointment of the day, I bumped smack bang into my arch enemy from my old job whilst dashing my little lupie legs from the dentist to work, once at work dropped a box of lightbulbs that smashed everywhere, dropped a full box of baby grows on the stockroom floor and then poked myself in the eye with a display prong whilst bending down to merchandise all the Christmas stock... All before 12pm.
Sods law dictates that the oddest and inconvenient circumstance happens to us with no synchronicity or value to that time or specific occasion, it happily holds hands with chance and unluckiness making the worst out of one particular day week or month.
At this moment on time I feel i'm pretty much on par with luck, she has taken away but slowly she is starting to give back, proving after all she may not be a lady all the time but will catch you a break when she's in the right mood.

Monday Monday...

I've been adamant from the start that writing this blog I wanted it to be personal, with article based posts reflecting personal experiences, thoughts and key issues that affect me and perhaps other lupus suffers. I didn't want to infringe on the widely more successful lupus bloggers out there by launching another blog of daily musings and helpful advice, I fear I may bore people to death with the vastly underwhelming activities of my everyday life! I also felt it better to avoid any vague possibility that I may start to get stuck and subconsciously fill my posts with vast amounts of useless guff that nobody wants to read. So I aimed for the approach to write longer pieces on a weekly basis that I could build throughout the week, a growth of ideas and reflections that I felt passionate about, dancing around in my brain like giddy elves screaming 'write me down yippee!' and so I obliged with snatched moments of scrawling whilst spilling my tuna sandwich on the staffroom table.
But this week I thought I'd try a break from the norm and try and get out a few of my lupie ramblings on a daily basis.. Mainly inspired by my husbands recent 5.30am starts in order to compete his storytelling ideas and creativity with other NanoWrimo participants.
So Monday, so far so good. As with every other working day i'm up 30 mins earlier than I really need to be.. The reason? The wonderful delights of my medicine box require my attention to make me resemble something human like for work. It goes a little something like this.
1 tablet at 7am to prepare my body for the onslaught of multiple medications at 7.45.
A gap for a bowl of porridge in between.
20 to 25mins rest before leaving so they don't turn my stomach into a knotted, churning time bomb.

Today like most days I feel like a walking advertisement for pharmaceutical companies - I could potentially earn a fortune if I was brave enough to wear one of those sandwich board signs saying "POWERED BY STEROIDS, IMMUNOSUPRESSANTS & OTHER DRUGS" all the while doing a silly dance and showing everyone how energetic I am that day.
Anyway, Monday is usually always a good day, i'm either rested from Sunday dozing on the couch or by a short and sweet shift at work that gets me home in time for the channel 5 Sunday afternoon movie. So my parting thought for today? Use Mondays to your advantage, there's plenty of days later in the week to feel tired.

The Waiting Game

“When obstacles arise, you change your direction to reach your goal, you do not change your decision to get there.” - Zig Ziglar

For all my lovely friends and family with their beautiful babies, the following words are not an act of resentment, indignation or malice, these words are merely my selfish catharthis.  I speak truthfully and with love to you and the incredible families you have created. - Claire
                                                               

 Yesterday, as I do most days at work,  I coerced a 3 year old little girl to colour some pictures in the fitting room while I assisted her pregnant Mother with some maternity clothes. I playfully showed her the crayons explaining cheerfully the name of the company branded bunny printed on the paper in my hand, I lifted her up on to the chair and tucked her in to reach the table, and as I did so I heard her mother say those words I encounter so often lately.
'Do you have children?'
'No, no I don't.'
I see her glance at my left hand,  and she spots wedding and engagement rings awkwardly clutched around a luminous yellow crayon.
'Oh its just you seem so natural and at ease' she smiles.
'Oh you know, lots of brothers, sisters, nieces, nephews and godchildren ha ha ha,' I joke.  But my game face slips and I wonder for a second if she sees through the facade and noticed the slight prickle of sadness behind my refined comedy routine.
It's not a devastating, encircling sadness that plagues my every thought and I'm keen to not be perceived as a teary, broody 30+ woman desperate for a baby, but in the same thought it's paramount that people see what it's like for the those women waiting at the sidelines. It is not the easiest to explain unless you have been in that situation yourself.  I can only describe it as a twinge, a flicker of envy and self pity when you see those around you announcing the news you seemingly have waited forever to announce, a pang of annoyance that they have it before you, that yet in the same cruel swipe breaks your heart at the momentary thought of resentment against those you love the most.  And then almost as quick as it comes, it passes, your day goes on and the excitement of a new baby coming is as much the same as everyone else.  What's hardest is the self conscious perception that all eyes are on you, the paranoia of pity from those around you when news spreads of another pregnancy in the family or circle of friends, the phobia that you're loving, loyal friends will know those momentary malignant thoughts when really, you are happy for them.  Just unhappy in yourself.
There have been several factors delaying our opportunity to have a family, notably to begin with it was the simple basics, the groundwork of stability and endurance that Mark has always known and that I have always craved since being together.. marriage and a home.  Old fashioned and unessential some may say, but important to us both. So many people have said 'if you wait 'til you have enough money to have a baby, you'll never have one'.  Quite cruel, abrasive words to someone wanting to be prepared as possible, to retain a normality and to refuse to struggle as my family did.
Once the marriage side of things was almost in place, we were of course thrown off plan with my health, 6 months of not working + 1 year of working part time + 3 months of not working at all tends to diminish the savings account and we were back to square one.
Those who know us well as a couple know thoroughly our situation in regards to having a child, others have probably made an accurate assumption and choose not to bring it up, either through fear I may burst into tears (i won't by the way) or because they understand how hard it is and that I don't need the constant reminder that it could be, and most likely will be a difficult journey for us.  Now at the not so tender age of 31 I am well and truly hearing the clichéd 'tick tock' of my biological clock as a deafening tone and it's giving me tinnitus.
According to statistics I have a mere 3 years and 9 months before my fertility rate rapidly declines to 35% (its 50% up until your 30's) but that of course doesn't take into consideration the seven rounds of chemo based nasties i've had pumped into me and the amount of potential mini Boardman's it has incinerated.
The reality of what I have to put my body through to have a baby is truly terrifying.  I risk plunging myself head first back into the nightmare of 2011, the nightmare of drips, wires, sickness and long stays in hospital combined with a new nightmare of high risk miscarriage, premature birth, pre-eclampsia and renal failure worse than the first time. But whether it be mother nature or completely selfish denial, there is absolutely no doubt in my mind that this is what I am prepared to undertake, no off switch or stop button, no reasoning otherwise.
Until then we work and we save, we go without luxuries, nights outs, holidays and weekends away, we work, we save, we watch everyone else achieve their goal of being parents, we smile, we be happy for them and we hope, with realistic propensity, that not long now, that will be us.

The Heart of War

“In each of us, two natures are at war – the good and the evil. All our lives the fight goes on between them, and one of them must conquer. But in our own hands lies the power to choose – what we want most to be we are.” 
― Robert Louis Stevenson

Rare is the day when you have lupus that no part of your body is sore, aches, itches, gripes, falls out (don't worry just hair) or is exhausted simply from the walk to work.
Managing these symptoms and putting in coping mechanisms is key to maintain some semblance of normality in our chaotic world. I am yet to discover a way of describing the difference in fatigue to someone who claims 'well we all get exhausted sometimes'. In response all I can say is well, its almost paralysing. There have been moments where your legs don't feel remotely attached to your body, and someone is smothering you.  It is this happy bundle of symptoms that we have you to juggle should we be deemed fit to work and hope our current or new employer can manage our welfare needs.
It's important for what I say  from now on I try and remain dignified and diplomatic in retelling the events to come. But I feel it an important part of my story and yet again highlights the need for understanding and compassion in the workplace, so often hearing stories of how seriously ill or suffering people have been mistreated or mismanaged welfare.
After being critically ill I was back at work in 6 months, starting off a few mornings a week and building up to four days. I had held a role with as a store manager of a very well known luxury retailer for 5 years,  from launching the store, building its business reputation, and becoming an established manager within the company. With an unblemished record and barely a day off sick the company backed me all the way when I became very ill and I left the store in the capable hands of my deputy.
Unfortunately when I came back everything wasn't so simple. Barred from managers meetings and discluded from line manager visits I was told it was because they didn't want me stressed... Gradually day by day I saw 5 years of my hard work unpicked at the seams by a ruthless 22 year old determined to make me feel like something she had scraped off her shoe, whilst using my ill health for her own personal and professional gain. Armed with her new sidekick that had the warmth and sincerity of Joseph Goebbels, she launched a campaign of discreet and at times barely noticeable acts of malice to discredit my name and alter peoples perception of me from a highly competent manager, to that of incompetent cripple. If I was in with Joseph without Hitler I'd know from snide remarks the next morning they'd had a PR conference call after work recounting my every move for the day.
Faced with an area manager whose infrequent visits made an absent father look like a role model and HR department who didn't know their arse from their elbow, I was again on the front line, still battle scarred and fragile from the war I had encountered previously. I was being punished for craving to return to my normality and what I thought was my life. A lot of what I encountered could, in hindsight, be condemnable for any employer. But at the time I was ill equipped to deal with the confrontation in front  if me, massively disarmed by six months of absence, loss of self confidence and the insecurity that I was perhaps being over sensitive and imagining it all.

Despite raising my concerns with my line manager and a brief ceasefire, things soon continued as before. Decisions were made on my behalf as to what was best for me in the workplace without consultation with me or asking what I wanted or how I was feeling, Hitler continued to badmouth me and tell all sundry  'I wasn't well enough to work' and soon enough 'Claire will leave, I'll get manager and .... can be assistant manager.'
Sadly, none of this could be proved, a lot was hearsay and one persons word against another. I'd been so consumed with getting back on track and putting everything down to 'teething problems' that I didn't even think about making notes, logging emails, details and things said... That all seemed like I was to be prepared for battle beforehand, but I wasn't, I just wanted my reality back. By March 2012 I was defeated, I had to make a choice, a choice that felt cruel but necessary - having to surrender and relinquish your hard work to somebody so utterly undeserving. They say good always triumphs against evil in the end but good has a soul and a soul needs sanity to survive.
On 19th April 2012 I sat solemnly at the desk that had been mine for so many years, pen marked and chipped from hours of review and report writing, now ungraciously claimed by another, and with a broken heart wrote the email that I never thought I'd have to write. It took me over half an hour to type the eight lined paragraph that summed up with a vague dishonesty my reasons for leaving and hit send. It was heartwrenching, not because I was a shallow workaholic that loved my job, but because of the hard work and dedication that had so rapidly disintegrated to nothing. Days worked over my contract, staffing nightmares, sleepless nights, midnight finishes after events, the clichéd blood, sweat and tears. The role had defined a huge part of me for so long and was symbolic of some of my best achievements, but it was clearly the end of a chapter and a little voice in side said 'its time to go', and 4 weeks later I did such that.  On reflection, I still wouldn't change a thing, don't place any blame or negligence or seek vengeance. Yes it was very cruel and unfair what they did but it had to happen to be where I am now.

After I finished in my management role I worked part time in what I hoped would be a less pressured, stop gap role but which it turned out to be just like jumping from the frying pan into the fire (that's right, the universe wanted its full quoter of hits with the shit stick - 2011 and half of 2012 weren't enough) I yet again found myself at the mercy of other peoples ignorance but this time it was with twice as many colleagues in a huge international corporate machine, my name another number on the payroll sheet (and they didn't even get that right).  And so I graciously emptied my locker, walked out the door and for the first time in my life added to government unemployment statistics.  Queuing up at the job centre is one of the most heartbreaking and soul destroying things I have ever had to do in my life, despite all that I had been through with my health and fighting for my life and my space on this planet, I now had to fight for a job and for respect.

When it came to interviewing for my current job, I battled with my conscience for several days in how much back story and information I should give them in the interview. Advice told me I should wait and explain the situation once offered a role, but after the hellishness of the previous working months I hadn't anything more to lose, I decided to be totally upfront and should I be asked to explain my drop in responsibility, if they didn't value my honesty or understand my illness then it wasn't a company I was prepared to work for.
As luck would have it this was a company like no other in regards to how they considered their employees. I was brutally honest, admired for being so and my illness - as it so rightly shouldn't be - wasn't even a factor. Two days later I got the call I was hoping for, I had the job and had beaten six other people to it. Six perfectly able, fit, healthy and just as experienced people.  A year later i'm still there, I work with lovely people who seem to understand and an employer who often remind me that my welfare is 'very important to them.'

The world of work and employment is a minefield when you a have a chronic illness or disability that impacts on your working life, and finding the right company or employer is simply down to chance. 

The whole experience of getting a new job is terrifying despite all the legislation in place to protect you, you have to hope that person considering you for a job will understand and see the talented, hardworking and committed person behind the illness.  It's Russian roulette, and there's nothing worse than wholeheartedly explaining your illness to someone and you can see in their eyes they don't understand, or especially with lupus, don't believe you, as you look like everyone else.

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.