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.