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.

thursday turd-day

Absolutely exhausted so here's todays post in the format of my boring lupie day ( well hey it's a break from the drivelly moany stuff - I've got lupus, I feel tired, blah blah blah!)

Woke up at 7.38am despite the opportunity to lie in til 8.15 (flexi hr day at work)... somebody in the night clearly ripped me out of bed, threw me downstairs, made me run on a treadmill for an hour and punched me in the mouth. So as per usual woke up feeling like a bloody superstar with a burning cold sore - feel long hot shower is the only solution, did not

Monday Monday...

I've been adamant from the start that writing this blog I wanted it to be personal, with article based posts reflecting personal experiences, thoughts and key issues that affect me and perhaps other lupus suffers. I didn't want to infringe on the widely more successful lupus bloggers out there by launching another blog of daily musings and helpful advice, I fear I may bore people to death with the vastly underwhelming activities of my everyday life! I also felt it better to avoid any vague possibility that I may start to get stuck and subconsciously fill my posts with vast amounts of useless guff that nobody wants to read. So I aimed for the approach to write longer pieces on a weekly basis that I could build throughout the week, a growth of ideas and reflections that I felt passionate about, dancing around in my brain like giddy elves screaming 'write me down yippee!' and so I obliged with snatched moments of scrawling whilst spilling my tuna sandwich on the staffroom table.
But this week I thought I'd try a break from the norm and try and get out a few of my lupie ramblings on a daily basis.. Mainly inspired by my husbands recent 5.30am starts in order to compete his storytelling ideas and creativity with other NanoWrimo participants.
So Monday, so far so good. As with every other working day i'm up 30 mins earlier than I really need to be.. The reason? The wonderful delights of my medicine box require my attention to make me resemble something human like for work. It goes a little something like this.
1 tablet at 7am to prepare my body for the onslaught of multiple medications at 7.45.
A gap for a bowl of porridge in between.
20 to 25mins rest before leaving so they don't turn my stomach into a knotted, churning time bomb.

Today like most days I feel like a walking advertisement for pharmaceutical companies - I could potentially earn a fortune if I was brave enough to wear one of those sandwich board signs saying "POWERED BY STEROIDS, IMMUNOSUPRESSANTS & OTHER DRUGS" all the while doing a silly dance and showing everyone how energetic I am that day.
Anyway, Monday is usually always a good day, i'm either rested from Sunday dozing on the couch or by a short and sweet shift at work that gets me home in time for the channel 5 Sunday afternoon movie. So my parting thought for today? Use Mondays to your advantage, there's plenty of days later in the week to feel tired.

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.