Hair Raising Awareness

While i'm neglecting my blog writing, lupus advocate awareness duties for NanoWrimo this month I thought i'd quickly pop in and say hi and post the video of my husband Mark shaving off his beloved golden locks for Hibbs Lupus Trust here in the UK.  My husband loves his hair very much, third only to me and the cat and it's seen various formations over the thirteen years i've known and loved him (naw! i know) so a precursor to his epic head shaving (which raised over £300 by the way) a few hairy (or hurrry as Mark would like to say in his Lancashire tongue) pictures of Mark from over the years as an ode to his sacrifice.  Keep scrolling for the video!

An open letter to Lupus

Dear Lupus,

We've lived together for nearly five years now, our cohabitation uncompromising and you, the uninvited guest illegally squatting in my world, my safe haven.

For all those New! faces

A very good morning to everyone today.  I know it's unusual, me being such a busy and tired little lupie and all,  for you to find a blog post from me so soon.  There are a few simple reasons for this.

Keeping up appearances

Lupus patients can be the most stubborn people on the planet, myself included. Notorious for not necessarily taking the best advice, making the most of any sort of energy - even if it means we're twice as tired at the end - refusing to accept ourselves as different and cherry picking when our condition should be taken into consideration for our actions or circumstance (chronic patient prerogative).  Not all necessarily bad things, if anything it gives us a sense of balance in a life that is slightly off kilter.

King of the Castle

As I trundled my way to work on this beautiful sunny Sunday just past, I took in the familiar sights and sounds of the delightful city me and my husband are lucky to call home. Many things about that walk were the same, my legs were stiff, muscles in my arm sore and I felt the usual foggy headedness that plagues me every morning in the hour and half before my medication kicks in. But there was one thing that had significantly changed, the air was fresher, the sky bluer and as if someone had thrown the gates opened wide and beckoned us in like old friends, the whole city became a world of opportunity, that which finally opened Saturday when we were told we're eligible for a mortgage.

Changing lanes

If past three years have taught me anything, then I'd have to say it's the ability to become highly adaptable. Life doesn't stay the same for anyone for too long, but with lupus you learn to live life not so much on a knife edge, but with eyes in the back of your head prepared for any sudden change, whilst at the same time looking forward to what is normality.  Less life in the fast lane and more life facing the on coming traffic.
These past few weeks again have given me the opportunity to use my chameleon like powers of adaptability and begin some new adventures on a different medication.
For multiple reasons my consultant and I have decided to put me on the slightly friendlier drug Azathioprine. Easily done yes? No.

Shade Hopper

Yes, I'm still alive (just about in the form of lupie torture that is is this heat!)
Whilst blog activity has been minimal and absence notable, it's a far cry from my daily, non-cyber related life.
So this month has been eventful to say the least, not including all the additional calories burnt hopping like a mad hare from one side of the road to the other to find the smallest glimpse of shade to walk in. I've also been making sure I remain permanently glow in the dark by applying industrial strength and ridiculously expensive factor 50 sun cream to my entire body everyday (the price we have to pay to stay the colour of a milk bottle) or as my 84 year old Grandad summed up last week in his concerned voice "ooooh, you're very pale aren't you".
My medication has changed too, the remnants of my final Myfortic prescription has been very excitedly shoved right to the back of my overflowing medication box and a box Azathioprine sat pride of place in what is vastly becoming a home  pharmacy. The downside, my poor veins hammered in weekly blood tests to check I'm tolerating it and my kidneys aren't going haywire again. More adventures on this coming shortly.

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.

Full time Lupie

If you have not yet delved into the far reaching depths and or earlier updates of this blog, you may not know that whilst having Lupus, I also work full time.  As many of us familiar with the disease know, it comes in all shapes and sizes (a bit like my waistline over the past 5 years) as well as severity.  To work full time for anyone is demanding, the relief of the approaching weekend and Saturday morning lie ins to recuperate, is notable if not from the sighs of my husband (the lovely and hardworking SuperMark) on a Friday morning, then the literary cheers, whoops of glee and photos with glasses of wine in hand on my Facebook feed on a Friday evening.  But for anyone working full time with a condition like mine, the reward of making it through a working week is far more of a celebration than the usual Friday night 'Beer 'o' clock' festivities.   To make it through to 5.30pm on a Friday when you suffer with chronic pain, fatigue, nausea, sore joints and a belly full of toxic medication is a rewarding and honourable achievement, because there was at one point in your life, when you thought you may never work again.

Karma Influence?

"We ourselves are responsible for our own happiness and misery. We create our own Heaven. We create our own Hell. We are the architects of our own fate." - Ven. Mahasi Sayadaw

The other day I knocked over the glass of water sat on my bedside table, swiftly and in clean slow motion, it toppled perfectly to one side, pouring its contents as skilfully as a running tap into my bulging and grubby makeup bag on the floor nearby, before rolling itself with a dull thud into the same flooded mess.  The same makeup i've been procrastinating about cleaning out for weeks,  divine intervention from the universe for being a lazy cow? Or just an ironic coincidence.

As long as I can remember I have been a great believer in fate, destiny and more notably the value of and concept of Karma. As we know,  Karma is a fundamental doctrine in the faith's of Hinduism, Taoism and is commonly recognised and taught throughout Buddhism.  The basic understanding of it being what you give it out to the world, you will get back in return.  When studied, it runs far deeper, delving into the theory of past lives and describes the philosophy as the 'law of moral causation', to understand the inequality of mankind, that our life as we know it is not merely coincidental or by accident, but the result of our past deeds and the actions we undertake in the present.

'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.