Heroic expectations

So..  first of all i'm going to rewind 2 years and give you a brief insight into my life at this very point in 2011.  Apologies to anybody who has heard the story a 1000 times, but you know,  I couldn't let down those cynics who say that Lupus can be cured by rest and vitamin pills - Thank you Atlanta for this one - and all suffers like to wallow in self pity, so here's some modern history (and a little self pity) of my own.

Thursday, 24 February 2011

Thought i'd do my first entry today seen as though i'm not sure how well I will feel tomorrow..... fruit juice (chemo) day friday.  Just a few thoughts for today.

THINGS THAT USED TO IRRITATE ME

1. Tights that never fit after one wash

2. Snoring - mark's especially

3. People on trains who insist on blocking the whole aisle to put their luggage away before anyone else has   had a chance to get to their seats - sit down and wait a minute

4. People who phone in sick with a cough - buy some strepsils and paracetamol.

5. Bad spelling on documents you can spell check

6. The preppy private school kids down the road with their windswept 'arsehole' hair, oversized rugby shirts and jack wills tracksuit bottoms.

THINGS THAT IRRITATE ME NOW

1.  blue vomit from cyclophosphomide infusions- i have to laugh at the hilariousness of it - if you don't it's just bizarre.

2. The 15 tablets a day i have to take to keep me alive and kicking

3. The 3 stone of fluid and swelling i've gained despite hardly eating a thing for the last 4 weeks - not a diet i'll be trying again...

4. The need for a sarong on my next holiday instead of just strutting my stuff in my bikini - my thighs are so stretch marked from all the weight gain they're like a strange crossbreed of gooseberries and prunes

5. People who moan they are having the worst day of their lives because they have tooth ache. SWAP.

6. Snoring - especially mark's - i'm allowed to keep that one, it'll never go away.

I am claire, i have lupus nephritis stage 4 with severe renal involvement. Google it. I've gone from working 40+ hours a week and managing a successful business to not being able to bath myself without help, in the space of four weeks.  It may be 6 - 9 months before they fix me. I get married in 3 and half.

Monday, 28 February 2011

baboon face

I have woken up with a balloon comedy face today.  You know those apps you get for your iphone that takes a picture of your face and makes it so you can see what you look like as a fat person...? well no technology needed... ta da look in the mirror. ME as a sumo wrestler.
I have spent the morning listening to a combination of lady gaga, simply red and fleetwood mac and trying to sing.. simple pleasures.
NEW STRETCH MARKS !! on my stomach now.. wooop my body really is going out of its way to scar me inside and out! a constant reminder of how ill i am / was in days to come.
My god - mum has just arrived with my orange sister and a bag full of new primark stuff - ahaha clothes that fit!!

I find this quite irritating to read now.  At the time I thought that my honesty was perhaps a combination of being a little self indulgent, yet brutally honest enough to make people believe I was brave and heroic.  The truth is that you don't feel very brave at all.  When your life starts to unravel due to serious illness or grief, you irrationally feel like your situation is far worse than anyone else's and you want to scream at the world to understand. Then the realisation that there are people far worse off than you swamps you with guilt for daring to have an ounce of self pity.. the worry that people may judge you or perhaps think your situation isn't as bad as you make out enforces a façade of stoicism and avoidance of playing a victim, in order not to disappoint peoples expectations of you putting on a 'brave face'.
I also felt afterwards that I hadn't been 'brave' enough.  As my health started to restore it seemed everywhere I turned people had battled much harder than me, people defying all odds, being extremely positive and not mentioning a word of how awful there illness had been.  People running marathons and jumping out of aeroplanes to raise money for the cause of their illness screaming a message to the world saying 'look how brave i am, i beat this horrible thing' and making me feel like that's what I should be doing.
I admired their inspirational stories and ability to stand taller than the thing that had all but deconstructed their lives, but I couldn't help but feel yet more guilt that perhaps this was to be expected of me? Was I not being brave by not being positive? Did I not deserve as much sympathy as these people because I hadn't yet found the courage to do something inspirational with my experiences? Or were they too just thinking the same as me and it was their very own way of putting on a brave face?
After 2 years of adaptation and changing my life to deal with fallout of those 6 months, I can still only just retell my experiences to new colleagues and friends without that guilt of appearing negative and uninspiring in my descriptions of how bad it was,  or worse them not quite believing or understand how bad it was for me.
Only now can I honestly say that for me those months were horrific, many people have been through worse, and I now feel thankful that I didn't go through worse, but for me, those days were the worst.. and I think that is very brave.