Plagued by illness

I know that in life there will be sickness, devastation, disappointments, heartache - it's a given. What's not a given is the way you choose to get through it all. If you look hard enough, you can always find the bright side. - Rashida Jones
I know from personal experience, that when you suffer from a chronic or rare condition, you are faced with questions, challenges and comments about your illness and your capabilities on a daily basis, be it by those generally interested, making sense of all the information or by misplaced sentiment.   At the other end of the spectrum you are faced with those who simply avoid any association with you, or someone else who is ill or suffering.

New Resolve

“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.” - Edith Lovejoy Pierce

This year it's thirteen years since I met the boy that would be the man I married, twelve years since our first date,  six years since we moved in together and five years since we got engaged, got a cat and I got my first borderline diagnosis (2009 was a busy year). Now three years a Boardman family member and hopefully by the end of it a first time buyer and homeowner.

From me and two glasses of red wine

So with glad tidings and yet again with lightning speed the wonder that is Christmas Eve is upon us.  Working in retail the opportunity to feel 'Christmassy' and enjoy the build up to Christmas is slightly stunted by the onslaught of crazy Christmas shoppers, bargain hunters, sale preparation and the woes of those less organised customers whose  requests, reasonable or otherwise, we attempt to resolve, because after all, it's Christmas.  It has meant, unfortunately, that the whole 'getting in the Christmas spirit' has been very literal its meaning, with and hour spent in the pub round the corner from work. Never the less, my Christmas tidings are from the heart as well as a third of a bottle of Merlot.
I'm keeping this short and sweet with just a few thank you's and wishes both for the year past and the year to come. I'm thankful that I have spent another beautiful year (my 3rd at that) as Mrs Boardman, it is yet to lose it's charm and I doubt it ever will, I am blessed that this year we have survived unscathed and I have managed another year without any hospital stays. This year has brought me a  goddaughter who is too beautiful to mention  and who emits the warm and generous nature of her mother, one of my best friends in the world. This year has also given me yet another amazing nephew who is truly gorgeous and full of hugs waiting to be given and of course the news that my condition is extremely stable and as healthy as I could possibly be.
I wish lots of love to all my friends, many of whom have created families of there own this year, to my family who yet again have provided lots of love and support despite having their own own lives to lead and problems to solve and of course, last but not least, to my adoring, faithful, hardworking and loving husband who's actions in our days spent together are the true embodiment of those vows spoken two and and a half years ago.  A Merry Christmas from me, two glasses of wine and a cheeky rum and coke.

Christmas Spirit

As we race towards Christmas with the speed and energy of a Meatloaf power ballad i'm confronted by the fact I've survived another year on this planet and moreso in the best (as far as i'm limited) of health and stress free in a long time. 
When you go through a traumatic illness, accident or life changing experience I like to say that it opens your eyes to the truth of what people go through, makes you a far less selfish person but of course I can only speak for myself.
I'm astounded at how easily I notice the shadows of hurt flickering behind peoples eyes. Sad stories playing on loop and transmitting silently to another through tone of voice, eye contact or a subtle smile that doesn't quite break across the cheeks.
Everybody has a sad tale to tell, some more than others. But those who have encountered utter pain need not speak a word, you will be read and understood.
Since my immune system has gone haywire, you'd hazard a guess that with nearly 4 years of regular hospital visits, stays and appointments I would be immune to the routine of going for my  consultations and would treat it with the nonchalance of fern cotton presenting Glasto. But no, far from a party in the mud and more like going back 18 years to the night before your A level results (or BTEC advanced if you were anything like me and found academia like wading through a swamp)
The trouble with me is that I have an overwhelming desire to care far too much about everything. Despite my husbands demands that I should 'not give a shiny what's sometimes i'm afraid it's just built in. So with a looming hospital appointments this week, my overactive imagination steps in and that suppressed but ever present thought of 'what if something isn't ok this time' starts doing it's little dance around my brain.  I ask for those that can see those invisible signs, just to smile and reconsider your actions, don't say those words of contempt, push past me in the busy shops or judge me because I'm a little bit quieter and more tired.  It makes my day that little easier,  you should know. You've been there too.

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..