This time tomorrow...

... I'll have my paws up.  Yes, they're slightly crippled and swollen paws, but they have neon pink nail polish on their nails to pretty them up.

Saturday night I and a few thousand others will be celebrating our uniqueness in the presence of the lady who inspired so many to embrace self-acceptance, Lady Gaga.

There's not much to say about her that people don't already know - she can be wacky, weird and wonderful all at once, and her hair and costumes divide the world in two.  

But when all is said and done, she makes great music, has a voice that is unique and incredible all at once, and she does all this while living under the cloud that her SLE might become a big part of her life at any time.  As anyone with an autoimmune disease will attest - the thought of even rolling over in bed can be too much some days... let alone a concert tour of 110 shows, spanning five continents.  I'm exhausted thinking about it. 

On that note... this is one of my favourite Gaga tracks.  Here she is performing for the Queen at the Royal Variety Performance.  I hope I am as mesmerised by her in person tomorrow night as I was by this performance!

Thirty things about approaching thirty...

My thirtieth birthday is rapidly approaching – and despite plentiful reassurance from friends who have surpassed this auspicious milestone, I can’t help but fluctuate between being completely at ease with (and just a little bit excited about) it, and the opposite end of the spectrum, being completely and utterly terrified about what is about to happen to me mentally and physically!

 

I hear this little voice in my head that says (ok, screams) “What on earth is your problem, woman?  You’ve already tackled life while feeling like a ninety year-old, so how hard can thirty be?  Really?!”.  That little voice has a very valid point – thirty isn’t that big a deal when your body ages at an accelerated rate compared to the rest of you.  And I have the advantage of not really looking my age – courtesy of some stellar genetics from my mummy dearest, and a Staph infection when I was sixteen that all but peeled all the skin off my face.  Sounds revolting – and trust me, it was! – but it’s meant that my skin is relatively new compared to the rest of me, and it’s forced me to take really, really good care of it, resulting in an almost flawless complexion that doesn’t look thirty (and neither it should, given it’s only 14 years old!). 

Some friends and I were talking about what thirty meant over dinner a few weeks ago.  The thing that we universally agreed on was that none of us – not those of us with incredible careers, or married, or with families, or well-travelled – had achieved all our twenty year-old selves had hoped we would by thirty.  My twenty year-old self had pretty lofty expectations for thirty year-old me.  I had imagined myself working as a pharmacist (tick) in a hospital (tick), married (buh-bow) and contemplating starting a family (buh-bow).  I had hoped I would have seen the world (buh-bow).  I thought I would be paying off my own home (buh-bow), having already paid off my HECS debt (buh-bow), and contemplating some post-grad study (well, I’ve already started – so I guess that’s a tick).  My expectations of myself didn’t change, even though I was diagnosed with RA at 21, I assumed (naively) that it would make absolutely no difference to my life plan.  While I don't blame it for any of the crosses against my twenty year-old self's plans, when it comes to what I thought my life would look like by now - oh, how wrong I was!

In searching for other people’s expectations of themselves at thirty, I found this list that was originally published a few years ago.  The completely hilarious Em Rusciano (follow her on Twitter @emrusciano) wrote a post about it on Mamamia a couple of months ago. 

By 30, you should have:

1. One old boyfriend you can imagine going back to and one who reminds you of how far you’ve come.
2. A decent piece of furniture not previously owned by anyone else in your family.
3. Something perfect to wear if the employer or man of your dreams wants to see you in an hour.
4. A purse, a suitcase and an umbrella you’re not ashamed to be seen carrying.
5. A youth you’re content to move beyond.
6. A past juicy enough that you’re looking forward to retelling it in your old age.
7. The realisation that you are actually going to have an old age—and some money set aside to help fund it.
8. An e-mail address, a voice mailbox and a bank account—all of which nobody has access to but you.
9. A résumé that is not even the slightest bit padded.
10. One friend who always makes you laugh and one who lets you cry.
11. A set of screwdrivers, a cordless drill and a black lace bra.
12. Something ridiculously expensive that you bought for yourself, just because you deserve it.
13. The belief that you deserve it.
14. A skin-care regimen, an exercise routine and a plan for dealing with those few other facets of life that don’t get better after 30.
15. A solid start on a satisfying career, a satisfying relationship and all those other facets of life that do get better.

By 30, you should know:

1. How to fall in love without losing yourself.
2. How you feel about having kids.
3. How to quit a job, break up with a man and confront a friend without ruining the friendship.
4. When to try harder and when to walk away.
5. How to kiss in a way that communicates perfectly what you would and wouldn’t like to happen next.
6. The names of: the Governor General, your great-grandmother and the best tailor in town.
7. How to live alone, even if you don’t like to.
8. How to take control of your own birthday.
9. That you can’t change the length of your calves, the width of your hips or the nature of your parents.
10. That your childhood may not have been perfect, but it’s over.
11. What you would and wouldn’t do for money or love.
12. That nobody gets away with smoking, drinking, doing drugs or not flossing for very long.
13. Who you can trust, who you can’t and why you shouldn’t take it personally.
14. Not to apologise for something that isn’t your fault.
15. Why they say life begins at 30.

For the most part, I think I have the list under control.  Granted there are areas of my life that I have prioritised more than others in recent times, and as such things like ‘A solid start on a satisfying relationship’ have been abandoned due to lack of interest - hey, I live in the small town where I grew up, pickings are slim!  But that said, given I now have six weeks until I depart my twenties, perhaps I should be getting my act together and ticking a few more things off my list...!

 

Sing it, sister!

Growing up, the vast majority of my time outside of school was spent doing one of two things - playing sport, and performing.  I miss a lot of the things that were once my day-to-day life, like playing, coaching and umpiring netball, playing tennis, being able to run... but my biggest regret is losing music from my life.

I've always been a musical girl.  I was lucky, I had a reasonable amount of talent that meant that it came easily to me.  I was never one for practicing (which I'm sure is responsible for the majority of my violin teacher's grey hair!), and it never took me long to teach myself a new instrument.  But as my hands don't work the way they once did, the concertos and sonatas that once flowed from my fingertips simply don't happen when my hands hover above the keyboard.

The only thing that I haven't lost (this week the exception) is my voice.  One's voice is such a distinctive instrument - each and every one is unique, irrespective of the fact that they may be interpreting the same piece of music.  It's portable, and you never leave home without it - and is a great way to relax, relieve stress and vent frustration!

When I saw this film trailer the other day it got me very excited... there are so many things about it that I love.  Firstly, anything that uses "No Diggity" in the soundtrack is a winner in my book.  I also adore Rebel Wilson (you may have seen her in Bridesmaids, or if you're an Aussie, in Fat Pizza), so that was a win too.  Add to that the very funny (and seemingly very musically talented) Anna Kendrick and Brittany Snow, and there's a lot about this movie that makes me want to camp out and wait for it to open!

Ultimately, this - and all the musically-influenced television we have at the moment, including The Voice and Glee - reminded me just how much I missed music.  Pity my neighbours - there will be a lot more singing coming from this house once my laryngitis leaves me alone!  Given this time next week I'll be in an arena with a few thousand other music lovers at Lady Gaga's Born This Way Ball, I get the distinct feeling my love of music and performing is going to be rekindled in a big way!

Another first...

... the first virus of the season.

Anyone who has a compromised immune system will sympathise with me.  Anyone who knows anyone with a suppressed immune system will understand that to make it almost to July without so much as a sniffle has been a hell of an effort!

But it's hit.  Granted, it's just a head cold, but in the 3 days it's been cohabiting with me in my body it's gone from a simple runny nose and a bit of a headache to a sinus infection, laryngitis and what I wouldn't be surprised to discover is an ear infection!

I've soldiered on at work, as we're incredibly short staffed this time of year (why, I couldn't tell you... just one of those things I guess) and I've had to plug a few gaps.  Such are the joys of being the jack of many trades!  I've washed my hands until they've cracked (due to dousing them with alcohol rub - once that stuff starts to sting you have to revert to the old water-and-antibac-wash trick), used more tissues than would be considered environmentally friendly, and endured more cracks about my husky voice than should be considered appropriate in the workplace.  

That said, I'm really proud to have dodged the lurgies this long - I'm not impressed that I'm sick, but it's part of the fun!  I am a terrible martyr, and will work through my illnesses unless I am physically unable to get out of bed in the morning - but I have vowed to take better notice of my body this year, and also this NPS graph which details your symptoms and when you're most contagious.

Given I've gotten home tonight, hopped straight into a steamy shower and then into my bed (with electric blanket) and done nothing but sneeze and cough - tomorrow might be a day for staying under the doona.  That said - I don't think I can physically consume any more vitamin C, so now to get some solid sleep under my belt and cross my fingers that I bounce back to life tomorrow morning! 

A sense of achievement.

Sometimes I feel as though I push too hard. I do to some extent, I didn't know any different. But now that semester one is finished, I feel as though I've achieved something huge - I've been sick, I've pushed my body to work 40+ hours a week, AND I've completed another semester of my masters. I submitted my final assignment tonight - and boy did it feel good! It probably wasn't my best work, but I was pushing against the forces of the universe to get it submitted, so I am, just quietly, incredibly relieved to be done.

Everybody needs a goal, something to aim for - that graduation ceremony (because I felt as though I blinked and missed my first one) is just one of mine.

Until semester 2, I am relaxing. Reading books instead of journals. And snuggling with my baby girl in the cold and icy evenings!

A change of pace.

I have spent this Queen's Birthday long weekend on-call and at work - backing straight up after being on-call and working last weekend as well, I'm in a bit of a state.  That said, every moment I'm not at work between now and 2pm on Friday will be spent completing my last assignment of the semester.  I would kill for some down time that is my own - quiet time, to watch a movie or just lie in the sun with a book... but until next weekend, that simply isn't an option.

When you have a chronic disease - whether it be RA, or lupus, or MS, or one of the myriad of other diagnoses that we attempt to hide on a day to day basis - sometimes your body whispers in your ear that you need to slow down.  Other times it speaks louder.  Other times it plain screams at you, deafening you and bringing you to your knees.

I have a sniffle.  Anybody who is on medication to suppress their immune system will tell you that this often means that the inevitable is nigh.  I'm not sure what will await me when I wake up in the morning, but I know that my lifestyle of late has been anything but beneficial for my body.  My eyes are tired, my brain is tired, and my body is exhausted.

If you are reading this and you, like me, are struggling with one of these diseases - take a moment.  Change your pace, smell some roses and take care of your body, before it decides to take evasive action!

Embracing the good days.

Good days, bad days.  We all have them, in varying proportions.  I was on a run of bad days for a good couple of months there - then my rheumatologist returned, we were a bit up and down for a while, and then we finally started to get somewhere.  

Today was the first day where I could honestly say I felt "good" in a very, very long time.

Today, I was published on Mamamia - I'm so proud and honoured to have my piece included on the site.  Mamamia describes itself thus: "On Mamamia everything is up for discussion  – from pop culture, politics, body image, food, motherhood, feminism to fashion and celebrity. We like to have a laugh AND a cry. We’re smart but not precious. Interested and interesting.  We have a community of  tens of thousands of people who are actively engaged and articulate. Just like a real life discussion with a group of women, you never know where the conversation will go. You also never know what’s going to be published on Mamamia on any given day. Serendipity is key."

Anyway, Mamamia allowed my piece to be read by a far wider audience.  Some of the comments made me both immensely proud and overwhelmingly emotional.

"Thanks for sharing your story, the more difficult a story is to share the more important it is to do so. My Dad makes walking sticks, and before he did he never realised how important they are to people who can not be without one. He has seen people choose a stick from his collection and seen how that person has formed a special bond with their stick, not just a tool for getting from a-b but a life long companion, a special firm friendship tht will never end!"

 "Thank you for sharing your story. I agree with others above, the absolute worst part is that people don’t believe you’re sick because with auto immune diseases you often appear quite normal. My mum still doesn’t believe I have lupus, even though I have shared my blood tests, experiences and taken her with me to the rheumatologist. I’ve worked hard to put it in remission, so it appears like I was making it up all those years. It’s very hard having little to no support."

"Rebecca, and all who have commented from their own experience, your attitudes give me hope for my two-year-old daughter, who will face some of these issues in her life after an attack of septic arthritis when she was 6 months old. I need exactly this type of education as the mother who will facilitate her ‘wellness’. Thank you."

And my favourite:

"I am so glad you wrote this post Rebecca, thank you! I was diagnosed with RA at age 11 and am now 26. I have been through it all… the medications and the side effects they bring, bed cradles to keep blankets off sore and swollen ankles and knees, lots of elastic pants and slip on shoes, the many many tests in addition to all the stigma, fatigue… how the list goes on.

The thing I have struggled with the most is the stigma or at least the lack of understanding of the complexities of the disease. I think it is particularly difficult when you are younger and you are trying to find your identity and work out who you are. You don’t want to be associated with an old person’s disease, you want to be thought of as and be young!"

The further we can reach with our stories, the more likely it becomes that society will be more tolerant of the pain and suffering it can't see.  There is so much awareness and fundraising for research into diseases like cancer, and anything that affects children - not that I begrudge them their awareness and campaigns, but I honestly believe that chronic diseases put such a burden on the individual and society that it would be so wonderful if some of the promotion of diseases came to focus on our life-long struggles.

I also bear in mind the fact that there are plenty of people out there who are like I was a few years ago - nowhere near being at peace with my diagnosis, deep in denial, and not wanting a bar of my prognosis.  My voice, though just one voice, may just speak for more than one person. It makes me all warm and fuzzy to read the comments from women who perhaps haven’t been able to speak out about their disease, whatever the reason. 

We’re all put on this crazy planet for a reason, and if mine is purely to endure and verbalise – I can embrace my purpose. 

It's been a while...

... but a forty-hour week at work has knocked me pretty flat.

I'm tired beyond any level of fatigue I've ever felt before.  My muscles ache like I've run a marathon, yet I haven't raised a sweat.  After so long confined to my house - and more specifically, my bed - it has been both exhilarating and exhausting to return to work.

On that note, I have only one day in which to rest before I have to tackle another six days on, so I am going to return to my old friend bed and rest my aching body.  Sometimes you just have to accept that your limit has been reached - and admit you need to recharge before you try again.  Today is one of those days.

May your achievements be many and your aches be few!