Operation Holiday

At this time of year, most people look forward to the festive season, especially having time off to relax and spend time with family and friends.

I, too, am looking forward to rest and recreation this year’s end because 2013 will be a bit different for me.

For the first time in 8 years, I won’t be recovering from surgery to repair rheumatoid-arthritis-damaged joints, or to reduce pain or deformity or improve function.

rheumatoid arthritis, RA, juvenile rheumatoid arthritis, JRA

Pesky nodules.

No hands, fingers, toes or feet are going under the knife.

No procedures to remove pesky nodules that sprouted up a year or so after they were last removed.

No rehabilitation sessions with the physiotherapist or hand therapist to regain or improve range of movement.

No x-rays to be taken, plastic bags to be worn when showering or multiples of stitches to be removed.

This year Arthur and I are on Operation Holiday.

Mostly because my hand surgeon said, that after 3 surgeries in a row, he didn’t want to see me again this Christmas.

He was only half-joking so I took his advice and I’m trying instead the “ignore them and they’ll go away” approach to my nodules.

You never know, it could work.

It’s not that I’m a surgery addict it just happens that when I moved to Brisbane, I gained better access to specialist surgeons, doctors and associated health professionals.

My arrival in the big city also coincided with 30 years of arthritic wear and tear that could do with seeing to, and having a job that afforded me to have 6 weeks leave when needed.

And at the same time my “nurse”, Mum, retired with Dad so she was available to supervise my recovery.

But this year the only recovering I plan on doing is after a huge Christmas lunch.

I hope your festive season is also full – full of great company, happiness, health and good cheer.

Even Supergirl needs to pace herself

Sometimes I forget about Arthur.

I don’t mean I ignore him or pretend he’s not there, because I do that most of the time, anyway.

I mean I actually forget I have rheumatoid arthritis.

Sometimes I’m enjoying myself so much or I’m so motivated to get stuff done that I forget my strength and stamina aren’t that of an Arthur-less person.

I throw caution to the winds.

I’m like Supergirl: able to lift a bus with one finger while leaping tall buildings in a single bound.

Take last Saturday, for example, I was up at 7.30am after a late night socialising and by the time I got to my PT session at 9.30am had done two loads of washing, stripped the bed, tidied up and written the grocery list.

After some strenuous PT, I traipsed around two shopping centres for three hours searching for cushions to zhoozh up my lounge suite and for food for the week.

Back home, I had lunch while unpacking the groceries, and doing another two loads of washing and hanging it out to dry.

Then I spent two hours weeding, re-potting some herbs and watering the garden.

Did I do the sensible thing and use my padded kneeboard to kneel down instead of bending over while re-potting, or the digging tool to prise free the pesky nut grass roots instead of straining my poor fingers?

No.

Did I go to bed early to rest my weary bones after all this frenetic activity?

No.

Instead, after making dinner and my bed, I sat on my new lounge cushions watching telly until late.

So yesterday I felt like a beach ball that’d been run over by a dune buggy – flat and no bounce.

But that’s OK.

Every now and again I need to be reminded that even Supergirl hits the wall when exposed to kryptonite.

So while my kryptonite, a.k.a. Arthur, shouldn’t stop me living life, I need to remember not to overdo it, listen to my body, pace myself and rest if I must.

Move it or lose it

As a non-sporty, nose-in-a-book type who likes a weekend sleep in, my fronting up for personal training (PT) every Saturday morning for the past 18 months is nothing short of amazing.

Up until recently, strenuous activity hasn’t been on my list of top 10 fun things to do.

As a child with rheumatoid arthritis, my doctor recommended I didn’t play sport for fear I’d hurt myself or break a bone, causing irreparable damage.

She didn’t get much argument from me because I figured there was no need to aggravate Arthur by doing something I could avoid.

Anyway, I got enough exercise chasing my two younger brothers around the yard or riding my bike around the neighbourhood.

As a young adult, my physiotherapist encouraged me to add morning ‘warm up’ exercises and swimming to my routine of biking and walking to maintain my range of upper body movement.

“Move it or lose it,” he said.

To this day, if I haven’t done my morning warm up after a hot shower, Arthur feels ‘scratchy’.

But over the years, I lost my motivation for water-based activities such as swimming or aqua aerobics.

The excuses are many: I can’t swim very well, walking barefoot near the pool hurts my feet, it’s too cold, it’s too hot, I don’t have the right togs…

As a result of not ‘moving it’, I began to ‘lose it’.

My right shoulder became painful to move and was hard to lift above my head, and both my shoulders rolled forward in a permanent slouch.

I became embarrassed to wear strappy sundresses because my shoulder blades protruded.

Eventually, I went in for joint replacement surgery but the surgeon changed his mind on the operating table, telling me afterwards my shoulder was too damaged.

It was only when lamenting my fate to my rheumatologist that he said, “You know you can rebuild muscle. That will help your movement and reduce your soreness.”

So I consulted a physiotherapist who specialises in exercise rehabilitation.

He designed a program for me, combining Pilates and PT, encouraging me to listen to my body, to stop exercising if hurting and rest if needed.

Gradually, I’ve boosted my general strength and flexibility, my posture has improved noticeably and my shoulder is less painful.

And that’s why I’m a stickler for my Saturday morning PT.

Food for thought

I’ve spent many a lunch break sitting on a shady bench in the city gardens, gobbling my sandwich and, at the same time, frantically flapping my arms, shooing predatory wildlife.

Ibis, ducks and water dragons may look harmless and non-threatening but are quite intimidating when on a mission for picnic food.

I admit to jumping in fright when the water dragon I was ignoring at my feet growled like a petulant Chihuahua seeking attention.

I don’t think my scurrying to another picnic bench to finish my ham and salad sanger was quite what the dragon had in mind but I had its best interests at heart.

I’m pretty sure processed bread, cheese and meat, and salad vegies are not the best diet for critters that usually eat small insects.

Just like I probably shouldn’t eat a packet of Tim Tams or a sticky date pudding for dinner when I should make sure my diet is nutritious and balanced.

Having rheumatoid arthritis (RA), it’s doubly important to maintain a healthy weight because being overweight puts excess strain on dodgy joints.

But I figure if I stick to the program on weekdays and eat low-fat, high-fibre food, including green vegetables and fish, and do some exercise, I’m allowed a blow out occasionally.

People often ask if Arthur and I are on a special diet.

Many people have heard that avoiding eating acidic foods such as tomatoes and oranges prevents aches and pains.

Luckily for me, because tomatoes and citrus fruit are staples of my diet, this is an old wives’ tale.

While there’s no proof that any particular diet reduces the pain or symptoms of RA, everyone is different and a food that doesn’t affect me may make someone else feel blah.

So it’s important to do some research – check our Resources section for links to useful websites, ask Mr Google or consult a dietician – and use trial and error to determine what works for you.

I find eating in moderation, aiming for a nutritious diet, exercising and trying not to feel guilty about an occasional blow out helps keep my weight and outlook in the healthy range.

Putting my best foot forward

Dodgy feet.

Dodgy feet.

Last week I heard a rumour my favourite shoe store may have to shut up shop because the lease on its city premises is nearly finished.

I know this sounds a typical first-world problem but as a woman with dodgy feet who finds it hard to find comfy-but-fashionable, larger-than-average, extra-wide shoes that fit full-length orthotics, the news is devastating.

As a time-poor wage earner, the ability to pop in and try on my favourite brand of footwear in my lunch break or on the way home from work has been ideal.

I’ve discovered the hard way it’s not a good idea to order online without trying before buying.

This may work for a few canny eBayers who’ve bought my rejects for a song but not for me.

Apart from the right fit dilemma, my fashionista friends tell me shoes can make or break an outfit so they need to look good, too.

And even I know your footwear pretty much determines your personal style.

So the pressure’s on to buy those perfect shoes but in my case my dodgy feet, not my footwear, determine my personal style.

Back in the day I had no choice but to wear my ra ra skirt or my stonewash jeans with “granny shoes” and pretend it was a fashion statement.

Thankfully things have improved in the footwear stakes, even for grannies, and while still a niche market, problem feet can step out in a variety of comfy-yet-presentable, and even cool, shoes.

With a bit of trial and error, I’ve found various Dr. Martens, particularly the long, zip-up boots; 8-holes and Mary Jane styles; and some Ziera (formerly Kumpfs) and Frankie 4 shoes are the best fit for me and my quirky style.

I guess I may just have to venture further afield to find a store stocking my faves.

Being normal

When I was diagnosed with juvenile rheumatoid arthritis (JRA), I didn’t think much about what the future held for me.

I was 9 and at that stage I knew I was going to be a famous fashion designer, get married at 23, have twins named Lynelle and Janelle and live happily ever after.

I didn’t consider for one minute that my aches and, sometimes excruciating, pains or my stiff and swollen joints would stop me living my life.

And I still don’t, nearly 37 years later, even though my life went in another direction to the one I had mapped out at 9.

As a kid living in a country town in far north Queensland, having JRA, or Arthur as one of my school friends called my illness, was a novelty.

Back then not many people had heard of JRA, let alone met a child who had it.

I remember a friend telling me I couldn’t have arthritis because her mum said I was too young.

In high school, some boys said I was “bunging it on” when I gave my teacher a note from my doctor saying I couldn’t take part in physical education classes because I had JRA.

I guess I can’t blame them because I looked and acted like there was nothing wrong with me.

Except when my joints were so stiff and sore that Mum had to rub me with linament after a hot shower and dose me up with paracetamol so I could function enough to go to school.

Then I smelt weird, looked unhappy, and moved stiffly and slowly.

I thought people probably didn’t think I was “normal” then.

I felt more normal when Mum showed me a magazine story about a boy in New South Wales who had JRA like me.

He was in a wheelchair because his arthritis was so bad he couldn’t walk but he was still getting on with his life.

‘See,’ Mum said. ‘There are other kids with rheumatoid like you. Some are even worse off. Always remember that no matter how bad you feel, there’s someone worse off than you, whether they have arthritis or not.’

That’s probably when it dawned on me that I had no cause to feel sorry for myself.

I had loving parents who cared for me when I was in pain, encouraged me to be independent and helped me to believe I could achieve anything I wanted.

But still I would have loved to talk to somebody like that boy who knew what I was going through.

As a teenager Mum took me to a few arthritis group meetings but the people all seemed really old and complained a lot, instead of sharing their experiences of how they lived life with their “Arthurs”.

While I understood everyone handled pain differently, by then I’d worked out my life with rheumatoid was better, even easier, if I stayed positive.

It seemed Arthur was more likely to flare up like an angry old man if I was stressed or depressed.

If I did the things I love – hanging out with family and friends, reading, watching my favourite TV shows, and going to the movies and for walks – I kept my positive outlook and Arthur was a calm, nice old man.

Today I’ve added travelling to my list of things I enjoy and the world has become a much smaller place in other ways too.

With the arrival of the Internet, it’s a lot easier to compare notes with other people with RA.

That’s why I’ve started this blog.

By sharing my life with Arthur and writing about the things I enjoy, I hope at least one more person with RA won’t think much about what the future holds for them.

They’ll believe they, too, can live a happy, fulfilled, and normal life with “their Arthur”.

I look forward to hearing from you.

Andie :-)