'roid rage

If theres one thing about this disease that offers certainty it's the guarantee that nearly every week there is something new to deal to with or lesson to learn. This week's lesson teaches the importance of HOW UTTERLY AWFUL AND ADDICTIVE STEROIDS ARE and even though you know you are not addicted in the shoplifting to feed your habit sense YOUR BODY IS AND WILL MAKE YOU SUFFER! There, that's the angry annoyed bit done with

What will be, will be.

It's funny, when you have been living with a serious illness for a few years the abnormality of it all compared to your previous life, fast becomes an obscure reality, an unblinking normality that we embrace subconsciously without concern. Collecting prescriptions, monthly trips to the hospital and medical terminology and abbreviations of our condition follow along with our normal routine, an oblivious parallel be barely notice but ultimately a complete redirection and added responsibility to our lives.  Partly this is of course acceptance, as time goes by and ultimately life goes on we absorb this oddities into our environment, a noticeable change that when examined for a second longer than usual is no more abnormal than a broken umbrella in a city centre council bin after a windy and rainy day, you notice it for a moment then brush it off, because of course, there is a logical reason behind it.

Tuesday I was at my renal clinic, the usual round of blood pressure, weight and handing over a urine sample before waiting to see my consultant, whom is now so familiar he is like a friendly, over educated Uncle who thinks he's being 'cool' and down to earth by using (very) mild profanity in the ten minutes you spend with him.  It was at this routine appointment, that I must have done at least 50 times over the past three and half years that I think I totally accepted with all positivity, that this was my life now.
It was unremarkable a moment as you could ever imagine, as I sat behind the blue flowery curtain in a side room with a blood pressure sleeve pressing my arm I handed over the little clear plastic tub of pee to the nurse, she placed another empty pot next to me, as I get every time, with a printed label that stated my name, date of birth and hospital number tapped it and smiled "a new one for next time." And with that simple sentence it felt as if the world just stopped for a second and everything made sense. Yes, I thought.  There always will be a next time, this is my life and that's ok.

I wish I had a time machine #2

Dear Claire, in just over 6 months time you'll be getting married.. Everything is working out, well, organised and paid for (for the most part). Those weird aches and pains have been diagnosed for nearly a year now, something linked to lupus. You haven't done much research into into though have you? Been looking after yourself? No ? what's new there then. It might be a good time to read up on it a little, perhaps so you are aware of anything unusual. Ignore the advice of the rheumatologist who told you 'don't google lupus you'll scare yourself stupid' Now is the time to perhaps shit yourself just a little, it'll be good for you in the long run.  Those blood tests you just had done in November because you were feeling extra tired, it might be an idea to chase them up or request a kidney function test… not sure if that was included at the time.. it could have been, they just have forgotten to tell you or it could be that not much has shown up.  Yet.
Now over the next few weeks things are going to start get really tough, so brace yourself and be prepared. First you'll start to get really really tired and a bit nauseous but you won't pay much attention to that, you're always tired. But when your eyes look puffy and swollen it's not a antihistamine you need it's a Doctor. You shouldn't wait a second longer.
What will follow you would never have imagined in your whole lifetime, but yet it will be feel like a lifetime, but it will all be ok and you will be well enough to get married at the end.
There will be lots of tears, and that's fine, because it is all so grossly unfair, not just to happen at all but to happen six months before a wedding you've waited a decade for.
On the flip side there are a couple of things that will keep you going over the next six months and you will laugh at times.
1. Ginger nuts - will help with the nausea but avoid the lucozade, it makes your empty stomach (trust me it will be very empty) sound like a 30 year old boiler warming up for winter.
2. Egg sandwiches - not until you get the top notch anti-sickness drugs, Mum will cut them into triangles for you, Mark will cut them into squares.
3. Pancake day laughter - Mark trying to flip pancakes for you and burning himself
4. Domino's in CCU - Mum, a Domino's pizza and some jealous CCU nurses.
5. Tramadol dreams - will help you sleep at least two days away from the hellishly long days, a sleepy holiday away from the reality of the time.

But no matter how hard it gets, know this. You will be looked after, you will be loved and you will get better.

to be continued…

read part one here.

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.