Sometimes it's about more than your physical wellness.

This weekend, as the first of the few weekends I have free of assignments, I have taken the time out that I should have taken months ago - and definitely on a regular basis.
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nour·ish  [nur-ish, nuhr-] verb (from dictionary.com)

1.  to sustain with food or nutriment; supply with what is necessary for life, health, and growth.
2.  to cherish, foster, keep alive, etc.: He had long nourished the dream of living abroad.
3.  to strengthen, build up, or promote: to nourish discontent among the workers; to nourish the arts in one's community.

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Nourishment is not as simple as eating a macrobiotic, organic, fruitarian diet (though that doesn't sound very simple to me!).  Nourishment is as much about nutrition as it is about nurturing, and fostering a state of well-being.  And frankly, this weekend proved one thing to me - that I need to take better care of myself.  Not better care of my medical conditions, or my waistline - but me.When I was trying to work out how I achieved this, I googled "nourish your soul".   I found a great article here, which gave these tips to nourish yourself:

Seek out beauty.  Whether you find beauty in nature or in a gallery, take some time to actively seek out beauty and inspiration.  Practice being fully present and taking in the good.
Find a new book that feeds your soul.  Spend some time browsing in a bookstore and seeing what calls to you.  Find a beautiful, peaceful place to relax and read.
Turn off your computer and television for an entire day.  We often don’t realise how much the media influences our consciousness until we have some breathing room.
Do something out of the ordinary.  Visit a new part of town that you’ve never seen before. Try out a new yoga or dance class.  New influences and experiences spark our creativity and feed our soul.
Say NO to something that is draining your energy and distracting you from what is really important.
Beautify your home. Do some early spring cleaning & make your living environment as comforting and calming as possible.  A clean, beautiful environment supports a clear, calm mind.
Write in a journal. Spend some time in dialogue with your soul.  Making time to listen to our inner wisdom often leads to new insights and a broader perspective.
Take time to do nothing but relax. Take a hot bath with essential oils.  Light some candles.  Listen to your favourite music.  You deserve it.

Funnily enough, these were almost exactly the things I did this weekend.  Nourished myself by indulging in some good food, good wine and great company, getting some vitamin D whilst taking a walk with a friend, laughing with old friends on one of our all-too-infrequent catch-ups, and taking some alone time to rest, relax, recuperate and prepare for the week ahead.  I had a (little) spring clean - I am all too aware what a toll cleaning and cooking takes on my body! - lit some candles around the house, and spent the afternoon on the couch with my kindle.   I spent the lion's share of the weekend without my computer on - after weeks of it barely being off. 

Sage advice, right there.

I had a fantastic weekend - though they are never long enough, I feel as though I have nurtured and nourished my soul enough in the past 48 hours to get through another week.   And though my body may not be at its best, I feel as though I am in the right head space to conquer the challenges that the next few days will bring.  I head into another Monday with a smile on my face, a song in my heart - and a promise to myself that I will take the time to nurture my soul on a regular basis.

When people care... too much.

I am a very lucky woman. 

Despite working for a very, very large employer, I have a wonderfully supportive group of people around me. They do their best to understand and support me through my journey with RA.

But sometimes I have days when I wish I hadn't told anybody.

Then, on the days I walk with a limp, I could blame the gym.  On the days I wear gloves, I could blame poor circulation.  On the days I am in incredible pain, I could blame a overly-physical game of mixed netball.  On the days I am exhausted, I could blame a late night.

Instead, on the days my body is at odds with my mind, everybody is acutely aware of the why.  Then, because they care, they offer suggestions.  Like "why don't you take (new position), it'd be better for you.  You know, a desk job.".  Or "You look really exhausted, why don't you think about cutting back your hours to something more manageable?".  Or "You really should take a holiday.  You look like you need a break.".

The truth is, none of these suggestions help.  They hurt.

Am I doing my job?  Am I doing it well?  Am I in any way not performing to standard?  Has someone expressed a concern that I am incapable of doing my job?  Have I made a mistake that could have hurt someone?  If the answer to any of these questions suggests we have a problem, then we should talk.  But until that is the case, I am doing my job.  My current job.  The job I enjoy and love, and, to be perfectly honest, am bloody good at.

I am acutely aware of the fact that my body will one day decide that it has had enough of my pushing it to its limit on a daily basis.  I am aware that the career I have carved for myself will have to be abandoned in favour of my failing health.  I am fully aware that my brain will well outlast the chassis in which it lives.  I do not need reminding of this, and I do not need to be pushed in that direction prematurely.

My recent experiences reminded me of a number of other things that "healthy people" shouldn't say to people who are chronically ill.  They include:

You don’t look sick.  You don’t look insensitive, either.  This is never a compliment, no matter what tone it is said in.  I don't need to justify my illness.
There are other people who have it way worse than you.  Thank you, I am very well aware of that.  I do work in an Intensive Care Unit.  This doesn't make me feel better, and in fact, makes me feel as though you are dismissing my illness.
Why can’t you just do (insert something here)?  Because I can't.  I have this conversation with myself this all the time, “Grit your teeth and just do it. Why can’t you just (exercise/work more/do something after work instead of going home and going to bed etc)?”. Imagine how badly it hurts when someone else says it.
It’s all in your head.  I beg to differ.  I have a number of doctors who have told me it's all in my body.
Stop feeling sorry for yourself.  I’m not.  But I won't deny I have a feeling of loss.   Does it surprise you that I miss being healthy and happy?  It shouldn’t.  I need time to feel sad and come to terms with the door to a part of my life closing.  I need time to get used to the new normal.  And yes, we are almost ten years down the line but I am still coming to terms with my normal on a daily basis.
You need to think positive.  Believe me, I wish it were that simple.
Oh, yeah, I have a really bad knee/ankle/shoulder.  I'm very sorry to hear that - however there is a good chance your sore joint is going to repair itself with time.  My joints are attacking themselves from the inside.
You just need more sleep.  I live on the few precious hours sleep I get at night.  But when you can't sleep for pain ("painsomnia", it's good fun) or because the medications you are taking leave you too hopped-up to get to sleep, no amount of desire to sleep will get you over the line.  Honestly, if only we could get each day to be 36 hours long, then I could sleep for 24 hours and still be functional for 12.
You’re always too sick to hang out. Stop being anti-social.  Believe me, I would much rather see my friends than collapse in bed at the end of each day - but there is a limit to what I can manage in a day on minimal sleep.  If people don't understand this, then they're not my friends.
You just need to take your mind off being ill.  Fantastic idea.  If we have a time machine and I can go back to my life before my diagnosis for 24 hours, that might just do the trick.
You need to be strong.   Actually, no I don't.  Who do I need to be strong for?  Being ‘strong’ to please others?  I don't feel the least bit guilty about having bad days.
Maybe you need to improve your diet.  My body is a temple.  I wreck it with awful toxic drugs, and I try to undo as much as possible by eating healthily.  Again, if I could cure myself by eating a raw, macrobiotic, organic, vegan diet - I'd do it in a heartbeat.
My aunt had your condition and she got better.  I'm thrilled for your aunt.  However, just like our fingerprints, we are all different.  My disease may be more severe, or more relentless.  Unfortunately one person being cured doesn't mean a cure for everyone.
You’re sick, again?  I apologise.  It's kind of an inconvenience to me too, you know.
No pain, no gain.  I'll give you a tip: chronic illness is not like being a sports-person or having a bikini wax.
Are you sure you should be taking all these medicines?  Well, given I'm a) sick and b) a pharmacist, I'm going to go with yes.
You just need to drink more water.  My three litres a day is suddenly insufficient?
I read somewhere that they are curing your disease with **insert bizarre remedy here**, have you tried it?  Unless you are a researcher and you are offering me a place in your trial, I’m sorry but I can’t take the suggestion of unicorn hoof capsules/flying pig feathers/fairy dust infusions seriously.

Recent history suggests I am not going to be free of this battle for a while, but I intend to fight it like I fight RA: with grace, persistence, wit, intelligence and determination.  And I will fight like hell.

My daily dilemma -- and my new favourite quote...

Learning is a gift.

Unexpected compliments...

Apologies firstly for my slackness... it's been a while between posts, mostly because I have started to forego sleep in favour of increased hours in which I can study, and despite my unusual aptitude for procrastination, I have been quite good at keeping my eyes on the prize!

Last weekend I was in Brisbane for a seminar for work.  Two days of lectures, sitting in the one spot for 8 hours a day, and a LOT of information flooding into my brain.  Add on the travel and the many, many sleepless nights that preceded and followed, and I can assure you I have spent the vast majority of this weekend asleep.

But while I was away, I was paid an unexpected compliment, which I felt was worthy of a blog post.

I lived in Brisbane for a while a few years ago, and made some wonderful friends there.  I miss them dearly and take any opportunity to see them whenever I'm in town - so Friday night I caught up with one of my absolute favourite women in the world for a spot of late-night shopping (ahh, how I love the Queen Street Mall on a Friday night!) and dinner.  We shopped, I squealed with delight when I found the Leona Edmiston dress I had been coveting for three months discounted by 50%, with a further 30% off (basically free by my calculations), we ate dinner at a cafe in the mall and listened to some great live music, before we hugged goodbye and went our separate ways.  On my way back to the hotel I decided I would drop by the supermarket to pick up some bottles of water ($6/bottle in the minibar was a little too outrageous for my liking), and on my way out of the plaza saw a walk-in massage store.  

Now I'm very picky about who I let massage me after the spinal fractures and ever-worsening RA, but I met the therapist and felt instantly at ease.  When I explained my 'limits' he not only understood but went one step further, asking which joints were no-go zones today based on pain.  Now, without trying to recreate the zen (and a little pain, but the good kind) he managed to unleash, let's just say that while I was incredibly sore beforehand - strange bed, long flight, one day in lectures - I walked out a completely different woman.  But before he was done, he massaged my arms (I blame all the computer work I had been doing for making them feel like my bone marrow had expanded... the pain was unlike anything I've experienced before, and I still can't find an accurate way to describe it) and while I thought I may die from the pain, I knew it was doing me the world of good.  The most medicinal part of it, however, was not the massage.  It was his words, when he uttered "My goodness, you have the most beautiful hands.  So elegant, like a musician.".  

A long time ago, before all of the pain, before all of the inflammation, before all the medication and doctor's visits and appointments with physiotherapists and massage therapists, I was a violinist, saxophonist and self-taught pianist.  My long, slender fingers instinctively found their way around musical instruments as if they had never known any different.  To this day, I can hear a piece I once played and my fingers and hands will move - position changes, vibrato and all - through the sheer power of muscle memory.  

It's been a long time since anybody called my hands beautiful.  Like many others with RA, my hands were among the first joints to experience RA symptoms, and came a very close second to my toes as the visible manifestations of my disease.  They are now ravaged by RA, swollen and red, with nodules and with fingers that don't exit the palms at the same angles they once did.  My nails are thin and brittle, always cut short to avoid them being long enough to bend and break.  The skin on my hands is stretched tight from the swelling, with fissured surfaces where the skin has stretched and torn.  I have long looked at my hands and seen ugliness, a visual representation of my pain, and felt a frustration and despair at the things they can no longer do.

But this man took one look at my hands and exclaimed that they were the most beautiful hands he had ever seen.  I have spent quite a bit of time since examining my hands, trying to see what he saw.  Then it dawned on me.  I can't see the beauty that others can see, because I still remember my old, perfect hands.  I can, however, appreciate the incredible things that my imperfect hands still achieve on a daily basis.  Where once opening a jar was considered pedestrian, now it is a sign that I am still winning.  My hands still produce beautiful penmanship (even if the pen has changed), they cook delicious food, they keep my house clean, they care for my fur-child and they help me to apply some artistic flair to my face each day so my best face can be put forward. 

To him, my hands were beautiful - to me, they are utterly breathtaking, and I will never stop being amazed.

Not my hands, but infinitely incredibly hands nonetheless.