Everybody needs a hero

Today I'm going to tell you a tall tale about a little known superhero, although the tale isn't tall it is certainly true and worthy of a place on every comic book shop display shelf. It's a triumphant story of true love beating all the odds, tears, happiness and playing guitar down the phone. What is most exciting is that the story is only in it's first few chapters, what is yet to come for our hero and what monsters will he have to defeat to defend his one and only true love?
I am of course lovingly referring to the very handsome curly haired blue eyed boy that is Mark, my wonderful husband and often referred to as SuperMark.

I wish I had a time machine

Dear Claire,

If I start by rewinding back to this time five years ago, we are back in a year that seems so alien rolling off the tongue now we are in the millennial teens of 2013, we are hopping back to 2008 with a pointers inspired by the great unknowable power of hindsight.
You have a lovely little flat of your own, a very nice young man indeed, despite the sarcasm and lack of housekeeping skills (don't worry, plenty of time to sort that out later) and a great job you've had for just over a year.. and isn't that good? It's been an incredible year for you, you've worked very hard and you should be very proud of yourself.
Just eighteen months ago you were working in a shoe shop run by a gambler and living in a cold damp house with a promiscuous irishman, his gay brother and a hippy loner from new zealand.
In ten days time you move in with the love of your life and as fate would have it just to make it that touch more romantic, just in time for Christmas. Don't get too excited, there isn't a diamond ring in your Christmas cracker this year (it's a pink nintendo DS) but just hold your horses, all good things come to those who wait.  This one's a keeper, he just likes to bide his time (with everything) very annoying and frustrating right now but it's something that you will love very much.
 One thing you will have noticed by now is the joint pain, the endless pounding in your fingers and inability to straighten your left arm without a shock of white pain down it. Yeah, that's not normal and it's not just arthritis, you should go the doctors for them to keep an eye on it, there's probably not much they can do right now and be prepared for them to not believe you that much, as blood tests at this stage will not really show that much to build a case, but at least if you are repetitive in your visits you might get an answer sooner than I did.
My advice for the next few months is to gain a bit of perspective with work and ask those above to help, you've just done 12 days in a row without a day off correct? that is not acceptable and you have absolutely no idea the strain you will put on your body as you continue to do this for another year. Stop.  Now.  You will find the act of separating the two an arduous task, as you always want to do the best for everyone, including the people who pay your wages, but you're forgetting one vitally important thing. You have completely forsaken yourself.   Be selfish, rota days off and book holiday time, negotiate for staff, delegate tasks and stop doing everything yourself.  It is a shop, the staff will cope and the business will continue to run.. and we'll leave that part just there.

The language barrier.

Lupus suffers are often the masters of disguise, in our own little world what we say or do is not exactly what we mean.. and perhaps sometimes neither do others in our lives..

Tis (almost) the season to be poorly..

As I looked out of the window yesterday morning at the first frost on the cars, it yet again reminded me that the worst of the winter months are yet to come, along with the busiest and most exhausting times at work. The times I'll need all the strength I can get but will have my energy tested to the limit with bugs, germs and aching bones from the cold.

How antimalarials started being used to treat lupus

http://www.lupus.org/blog/entry/why-are-treatments-developed-for-malaria-now-widely-used-for-lupus

A Poem for my darling daughter Claire

A Poem for my darling daughter Claire

February 23, 2011 at 9:17pm

  

I remember the day you were born, it feels like yesterday

I looked into your beautiful face, you took my breathe away

I promised to protect you and love you your whole life through

Because you are my daughter, it’s what mothers do.

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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.

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.