Positive (side) effects

 

My extended blog-absence was precipitated by my contracting a bug from work.  I'll spare you the gory details (believe me, you should thank me for that much), but it was a bug called norovirus - which basically induces the most severe, undignified form of gastro you can imagine.  My mother came to check on me after my first night of agony and was horrified with the condition in which she found me.  I admit, I don't think I've ever been so ill - and the fever was in full swing by that stage.  While she wouldn't admit it at the time, she was really scared (and I won't lie, I looked remarkably like a corpse) so when she couldn't convince me to go to the hospital, she ended up staying the night to make sure I would be ok.  What a trooper my darling Mum is.  One of the worst parts of the whole experience was the complete inability to hold anything down - fluid, food, drugs... which meant that everything else went pretty haywire for a while there.  I am so grateful now for the ability to be able to swallow, retain and absorb my usual meds that keep me functional.  Something so simple, but it makes all the difference to ones quality of life!

Anyway, the silver lining to the norovirus - trust me when I say I had to find one, because there wasn't much about the experience that was in any way pleasant - was that the fluid retention of almost 8 months of steroid therapy got eliminated in pretty dramatic fashion.  While there is still some residual fluid that's calling my knees home, the oedema and swollen ankles are gone.  Vanished.  Kaput.  At my 'lightest' during my ordeal, I was 14kg under my pre-virus weight.  Yes, you read that right.  FOURTEEN KILOS.  I'm now about 8kg lighter, now I have been able to stomach small amounts of food and fluids (mostly in the form of icy poles).  It's been a bit over a week since it all began and only tonight can I say I feel relatively normal.  There's still some residual nausea which I'm guessing will take a little while to leave, but at least now I am eating food again.  Granted it's pretty plain and boring (still too scared to eat anything dairy or rich) but it's food!

Speaking of food, I'm such a Masterchef Australia tragic.  I adore the show, the people, the food - but being the proud Tasmanian I am, my absolute favourite this year was Ben.  Ben finished in 5th place this year, with his best mate Andy taking out the title - and I have to say, all bias aside, they came across as two of the most genuine blokes on television.  The kinds of guys you want to have a beer with at the pub, or kick a footy around with at the park, or take home to your Mum.  I was so thrilled when Andy was announced as the 2012 winner last night - truly a win for the nice guys, and the food he served up was spectacular.  I really look forward to having the opportunity to eat at their restaurant (rumour has it that the boys, along with fellow contestant Kylie, are going to be running a pop-up restaurant in Tassie soon... I hope I get the chance to go!) and see what they do next.  Ben's success is such a win for my home state, because he's a passionate about being Tasmanian and living here as I am, and I know he'll promote the state, our wonderful food and our clean air far and wide.

Ben outside the Callington Mill in Oatlands, Tasmania

When the person in the mirror isn't you anymore.

Following a considerable period of time where my RA has been completely out of control (read: constantly flaring), my lifestyle has changed in a big way.  Where once I would go for a walk a few nights a week after work (after letting my gym membership lapse the last time I went through a rough patch), I have become relatively sedentary.  I get home from work (which is spent mostly on my feet, and even on a day that I'm "taking it easy" seems no trouble to accumulate 8000+ steps) and am completely exhausted, so the thought of cooking dinner is not only traumatic from a "what on earth am I going to eat?" point of view, but the thought of spending more than a moment more on my feet is utterly out of the question.

The results have been slow coming, but the last week or two when I look in the mirror I don't see myself any more.  I've always had reasonably prominent cheekbones, a defined jawline and chin, and as I approach thirty the tell-tale signs of a life of laughter - crow's feet and smile lines - were starting to appear.  Between my lifestyle changes and the ridiculous amount of steroids I have poured into my body in the hope of gaining some semblance of control, I have stacked on a ridiculous amount of fluid and weight.  The worst part is that first moment you brave putting your feet on the floor each morning.  The pain that is a normal part of my morning routine is deterrent enough, but when there's an extra 15kg resting on inflamed toes, feet, ankles, knees and hips - well, it's not ideal.

So what now?  The steroids can't go - this week's flare has been a harsh reminder that one should never get ahead of herself, nor too optimistic about the potency of new therapy!  My diet isn't terrible, but let's face it, we could all eat better.  Exercising sounds wonderful - but the physical exhaustion is a killer, and while I would love to swim or Aquarobics or AquaZumba, the simple fact of the matter is that my skin simply won't tolerate the chlorine content of any pool within a few hundred kilometres.  Darn you children who insist on putting the "P" in "Pool".

Instead, I'm going to have to get drastic.  We're talking severe caloric restriction.  We're talking dramatic turnaround time - because wedding season is nearly upon us and I'm determined to wear 'nice' shoes rather than 'sensible, boring' ones, and that means ditching some of my excess baggage.  I'm determined to find a source of exercise that is a) fun, b) minimal-impact, and c) will inspire me to get moving even on the days I would rather slip into an analgesic-induced coma.  I'm not sure I can manage to recognise the girl in the mirror before I hit thirty - but I know I can make some changes between now and then to know that she'll be returning sooner rather than later... wish me luck!

PS  In addition to Thirty Things About Approaching Thirty, the amazing Em Rusciano (follow her on Twitter) has posted her set of questions on Mamamia today.  Check it out. 

"If you want to see a hero..."

"... look at a person with RA.  I've never met someone with RA who isn't a genuinely nice person.  With everything they put up with, day to day, they have every right to complain, to be bitter, to be anything but nice."

Those words were spoken by one of the respiratory consultants at the hospital where I work.  He doesn't know me, nor that I have RA - but I thought that was about the nicest thing I'd ever heard a doctor say about a patient group.  My colleague who heard this statement said she immediately thought of me, my martyr-dom and my stoic nature.  My ability to put on a brave face irrespective of how much pain I might be in.  How I still manage to put my patients first when I would be well within my rights to feel as though I would be better off in the bed.

Hearing her speak so positively of my positive traits, I felt a little like an imposter.  Truth be known, I cried a number of times today - simply because standing, sitting, moving, thinking - was all too painful.  I went out for dinner tonight (against my better judgement) for my darling mother's birthday.  The tears streaming down my face as I tried to get myself down the three steps from my front door, then lower myself into the car, then over bumps in the road, then trying to unfold myself from the seat... I had conveniently forgotten how every movement requires bracing yourself for the next moment that will jolt something that hurts.  Now I am laid up in bed, electric blanket cranking, propped up on pillows to avoid the painful joints having unncessary pressure placed on them.  If I didn't know better I'd think at least two of my toes were dislocated judging by the pain they are generating.  Don't even get me started on the bigger joints like knees and hips and shoulders and elbows.  

But then I think of those kind words spoken by Dr M.  How he's in awe of how we cope, how we compromise, how we continue on our merry way with this disease.  It makes me think of how I am secretly proud by the shocked expressions on people's faces when I reveal why I am limping, or wearing my compression gloves, or why I had to take an extended absence from work with no notice.  I'm proud because they don't think I have a disease, they think I'm a perfectly healthy human being.  It means the facade is holding up.  My ability to apply makeup so I look like I've got a healthy glow and have had a full night's sleep is hanging in there.  I do my best to fool the world every day - because perhaps if I can fool them, I can fool myself for a moment.  To remember a life with no pain, no struggle, no compromise...