Around the world in 80 Facebook updates.

On Friday May 10th, I sat in the staffroom at work and as I scrolled down my Facebook feed I  felt that familiar lump in my throat - something I get a lot these days, i'm such a cry baby - and began to well up as post after post from my friends and family appeared on the screen reiterating my update earlier in the day that it was world Lupus day.  World Lupus Day is the one day a year that all of us 'lupies' around the globe unite with one conscious thought...... to annoy all you fit and healthy people and bombard our Facebook and twitter feeds with lupus facts, information, funny pictures, poems and yet more encouragement to take note of what we have have to deal with or even better, take a minute and have a quick read about it.
As I sat there on my coffee break halfway through the morning I was overwhelmed already by the response, re-sharing of this blog, comments showing their support and directions to the charity page.  By 11am I had already seen 5 shares and reposts, that's 5 friends that had shared the information with between 100 - 500 of their own friends, that's 500 - 2500 that will have seen the word LUPUS in their newsfeed that day, 500 - 2500 people that could potentially have a look and see what it is, 500 - 2500 more people that will understand better how debilitating the disease is, 500 - 2500 more people who will care and know more about Lupus when perhaps they meet someone with the disease.
The point i'm trying to get across is that you may not think that your contribution of sharing or mentioning it would matter much, but actually you can see for yourself from the example above how many people you could reach.
Everyday we have to explain to somebody new what this illness is and how it affects us, everyday we are met with blank stares and expressions when you mention the word Lupus, everyday you get the distinct impression that people don't quite understand how serious it is just by telling them.  I don't blame them, but perhaps they would understand more if they went away and read about it, for some strange reason there is something more believable about reading something in black and white than taking it at face value from someone you have spoken too.
I know at times to a lot of people i may sound repetitive, sometimes i can almost hear the eyes rolling in peoples head as i waffle on about Lupus yet again, but the reason is because there is always somebody who doesn't know yet.  I can't impress on people enough how important awareness is, it's so easy to ignore the information or words in front of you and think 'it doesn't affect me or my family so why should i be interested?' I mean, we all have busy lives and our own problems don't we?
A survey conducted by the LFA (Lupus Foundation of America) of 1000 adults concluded that 62% of people had either only heard of the word LUPUS or had no knowledge of what it was at all and this is a country that is far more medically advanced in the treatment of lupus, lupus research and awareness, so can you imagine what results would be produced here in the UK?
When i first started in my new job, i filled in a medical declaration form to inform them of all the medication i receive, my medical history and how it could affect my employment.  A few days into the role i was taken aside my regional manager who assured me she understood Lupus, the medications i have to take and asked my what she could do to help.  This simple exchange of words blew me away, such a basic act from an almost stranger at that point, the fact they had taken a second just to say i understood, i know how bad it is,  you don't have to explain - restored my faith that people can and will use an opportunity to learn.
Awareness is understanding, it's open mindedness and consideration of others, it makes us better friends, employers and colleagues. Just having that one piece of empathy and understanding or even just knowing that one fact when someone tells you something serious or important about themselves, can make their whole day.
If we could take anything away from May 10th, it should be that taking one minute out of your day to learn something new, could change someone else's day for the better.  If we took that minute every week how many days could we change for people in the future?

gaining perspective

You would think I would know by now that you can't plan a thing or take things for granted when you have Lupus.  I've been working full time for over four months now (Yay go me...!) and have had every single cold going thanks to my daily interactions with the general publics offspring, whom are indeed very beautiful,  but are at the same time toddling germ disseminators (no offence intended) that play havoc with my compromised immune system! A form of self torture perhaps or just an occupational hazard?

Anyway i'm rambling back to the point i started with: worked hard, been ill ridiculous amount of times, not had a day off (hero complex), worked crimbo = looking forward to a week off to see my nephews and have a few days to myself, do jobs i'm too tired to do when working and generally recharge. Lovely yes?  * family fortunes style buzzer noise* 

After spending three lovely days with my nephews I am rewarded with so four days of chronic nausea and lethargy and not want to touch and ounce of food, at which point left me with precisely 1 day to hopefully recover and get my strength back before i had to go back to work on Sunday. Holiday over for me.   Then by the grace of god another miracle happened! Woke up monday with my fifth cold and bad chest since the beginning of December.  Now i don't know about you but i think that is a personal best! an average of 0.4 illness per week or 2.4 per month (yes I did the maths), i certainly hit the jackpot with this one.
You see the thing about Lupus is when he comes to the party, he usually brings a few of his mates along too, and i'm not just talking about colds, flu and stomach bugs - they're just gatecrashers that turn up occasionally, annoying but easily distracted by the next party and  soon move on -  Unfortunately there's some big boys that turn up, make a real mess and you need to get the professionals in to help clear out.
 I know the best of us have to deal with being struck down at the most inconvenient of times, who hasn't been ill as soon as we finish work for christmas - but when you've had to rearrange and change your whole lifestyle already and it continues to happen with unfair regularity you can't help but feel that someone is starting to have a laugh at your expense.    Its these times that yet again I have to really dig deep to gain perspective on the whole situation, to realise that things have been far worse.  But i'll be the first to admit it's hard, when there's something new to deal with my health nearly every week it's easily to slip into mindset of believing there's somebody up there having a big laugh.  Thankfully i have a wonderful husband that keeps me very grounded and friends that do remind me quite often they 'do actually give a shit'.
I probably sound like a broken record by now but its very true that there is always someone worse off out there or hurting more.   People proportion blame for things that are wrong in their lives far too broadly and with misplaced fact - what a difference it would make if they actually cherished the smaller things and valued what they had in front of them.  Perhaps then if there really was blame for something they could pinpoint the problem directly, you can't blame a whole hospital for the failings of one doctor. If i was angry and tried to blame someone or something for all that happened to me and how its taken my life right off track, i'd have no friends, no job and nothing worth trying to hold onto.
One of my major frustrations is peoples lack of perspective, even with the smaller things, why get angry   at the bus being late when you know your friend is ill? why get angry about what the bitch at work has said when you get to go home to a warm house and loving husband?  worry about your health, your family's safety and how your friends are, not whether you can afford a holiday this year.
Can you get this type of perspective without experiencing anything awful or traumatic or character building in your life?  I honestly don't know, i think there are those who have in incredibly open mind and can easily see without a glimpse or reminder and i think there's those who can by seeing it through the eyes of someone else, inspiration making them see the light of day.

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.