Work it, baby

Job well done...with a bit of research and experience, Arthur and I have found our perfect occupation, writing.

Job well done…with a bit of research and experience, Arthur and I have found our perfect occupation, writing.

Kicking back on Labour Day made me think about how having rheumatoid arthritis (RA) had affected my working life.

To clarify: my paid, formal, get-out-of-my-pyjamas-before-leaving-home type of work, not my daily schedule of household chores.

If you’re interested in handy tips for working around the home, read a previous post.

A job is one of the best distractions from the ever-present Arthur so it’s important to find the right one.

Your job needs to be something you can do and enjoy doing, and should come with understanding employers.

After a year as a checkout chick last century, I discovered I wasn’t physically cut out for continuous standing interspersed only by packing and lifting groceries.

Nor was my mind agile enough to calculate change and remain perky and helpful while longing for a comfortable chair, a cold drink and a foot massage.

I hadn’t told my employer or managers about my chronic disease because I assumed they wouldn’t hire me and I didn’t want them to think I was incapable of doing the job.

Back then I didn’t have the visual cues most people associate with RA: swollen and misshapen, a.k.a. dodgy, hands and feet so I figured I could get away with simply looking young, fit and healthy.

And, anyway, I considered myself able bodied – and still do – even though arthritis is a recognised disability.

Under the Disability Discrimination Act, I could have asked for “reasonable adjustments” so that I could perform my job properly, for example, a stool to sit on at the checkout when I was tired or more regular rest breaks.

For that matter, anti-discrimination laws protect workers with a disability from being treated unfairly, including during recruitment.

If you need advice on your rights and options at work, you can contact organisations such as JobAccess and Centrelink.

I’ve had three career changes in my working life and there may be more to come because retirement is still a speck on the horizon.

Because of Arthur I’ve had to be adaptable and a bit choosy about my occupations.

In doing so I’ve ended up in enjoyable, doable and fulfilling jobs.

These days I tell employers about my RA within my first few months in the role.

This has led to understanding and accommodating workplaces when I’ve needed to take time off for doctor’s appointments, surgery or during a flare up.

And once my colleagues are aware of my limitations, they usually help with tasks I can’t do such as lifting heavy boxes.

If ever you can’t do your job because of illness or disability you may qualify for a superannuation disability benefit.

You may also be able to claim disability benefits if you have insurance policies such as income or mortgage protection.

For more information about accessing your super or insurance policies, visit the Chronic Illness Alliance website.

Procrastination kicked to the kerb: my journey continues

Does my bum look big in these stripes: Capturing this zebra family on film was an African safari highlight.

Does my bum look big in these stripes: Capturing this zebra family on film was an African safari highlight.

I’ve always been the Great Procrastinator but this is one of my best efforts.

Last time I posted, nearly two years ago, I was about to start long service leave and head into the wilds of Africa.

I went. It was fabulous.

I intended posting a travelogue detailing the amazing places and animals I saw, the once-in-a-lifetime experiences I enjoyed and the fabulous people I met.

Trouble is, during my three months long service leave, I didn’t have much time for culling the copious notes I’d jotted along the way or selecting a few photos from the hundreds I’d taken.

I was too busy planning, packing and unpacking for a series of adventures: chilling out in Vanuatu, cruising the Great Ocean Road, and hanging out with family and friends at home and in the far north.

Hangin' with the locals: This iguana in Vanuatu nearly came home with me in my port.

Hangin’ with the locals: This iguana in Vanuatu nearly came home with me in my port.


Then it was back to the busyness of work and the last thing I felt like doing after spending all day in front of a computer writing was sitting at home in front of a computer writing.

There were too many distractions – family and friends to catch up with; movies, concerts and shows to see; books to read; places to go; gardening to do;

Gratuitous Great Ocean Road pic: the Twelve Apostles.

Gratuitous Great Ocean Road pic: the Twelve Apostles.

and the usual home, life and health maintenance to do.

And from the August of 2014, there were trips up north every few months to check in on Mum’s recovery from a broken ankle and on Dad following his dementia diagnosis in early 2015.

Motivation became even lower last year when I joined Arthritis Queensland’s Facebook group, Swell Gals.

It seemed there were so many people in so much greater pain than I who were doing it so much tougher.

Some of them still don’t have a diagnosis or treatment that works.

Why would anyone want to read about my pithy and positive experiences of life?

Sunny days: the results of my attention to my garden the past few years.

Sunny days: the results of my attention to my garden the past few years.

I’m lucky. I’m pretty much pain free and living my life independently, working full time, able to keep tabs on the folks and maintain a social life.

I mentioned this to Mum, who reminded me that I, too, have been in a lot of pain, uncertainty and distress over the years.

“Don’t you remember all those days you had off school and all the trips we made from Mareeba to Cairns to see the paediatrician to find out what was wrong with you?

“And then, when we knew what was going on, driving the 10-hour round trip to Townsville to see the rheumatologist?”

I’d nearly forgotten the disgusting taste of the 12 dissolving aspirin I had to chug down despite their ineffectiveness and the kids at school asking why I always smelt of Dencorub and got out of doing phys ed.

Science has come a long way with treating rheumatoid arthritis (RA) but even these days I still have to cope with unexpected flare ups.

Mum had reminded me that while having a chronic illness may bond a group with a common element, everyone is different.

As each person has their own stuff mentally, socially, economically and physically, it follows that RA affects everyone differently.

Catching up with friends: Ran into these guys at Brissie airport on one of my trips north.

Catching up with friends: Ran into these guys at Brissie airport on one of my trips north.

To coin a reality TV cliché, each of us is in different stages of our RA ‘journey’.

And I’ve been on my ‘journey’ a bloody long time and have learnt a trick or two about living with Arthur.

Being individuals, some people may relate to or find some hope in my musings and some won’t.

But that’s OK because writing is one of my pleasures and a distraction from living with the ever-present Arthur who can sometimes be a (figurative) pain in the arse.

I’ve realised I need to stop procrastinating and just write.

If someone finds something of interest or value in my ‘journey’, then that’s an added bonus.

Beating the blues

Being a glass is half full type, i.e. having a positive attitude, is an asset for someone with a chronic illness such as rheumatoid arthritis (RA).

Pain, joint swelling, stiffness and disability can lead to emotional problems such as stress and depression, which tend to aggravate Arthur.

I admit that as a cynical optimist there are times I have to work at looking on the bright side of life.

Over the years I’ve found a range of feel-good tactics that help Arthur and I cohabit peacefully, including:

Laughing

‘They’ say laughter is the best medicine so phone that funny friend, watch American Pie again, play frisbee with your dog or borrow the latest Janet Evanovich from the library. Do something that tickles your funnybone.

Adventure seeking

Jump in your car, crank up the stereo and head off down the highway. I find singing and head bangin’ along to the likes of Bohemian Rhapsody increases my sense of adventure.

Looking for adventure keeps the blues at bay.

Looking for adventure keeps the blues at bay.

Exercising

Exercising doesn’t have to be a chore. Replace the weeds in the garden with some flowering plants, walk the dog by the river, bop to your favourite tunes while vacuuming or join your friends for a yoga class.

Helping out

Whether you lend an ear to a friend, donate to a worthy cause or volunteer your time, helping others takes your mind off your troubles and gives you a warm glow inside. It also reminds you there are others worse off than you.

Indulging

The endorphin-inducing power of Tim Tams dunked in a good coffee or beer battered fish and chips with a sav blanc shouldn’t be underestimated.

Looking bright

Have you ever noticed that on a cloudy or cold day, everyone is clad in black and wearing a frown? Your clothes definitely influence your mood so lift it by wearing something bright and happy. If you must wear black, spice it up with a cheerful item such as a pink belt or sky blue scarf.

Having a hobby

I suck at anything arty and crafty, and reading is more a way of life than a hobby, so I collect recipes. Not that I’m a great chef. I just love pasting recipes into large exercise books, which I take hours to flip through before grocery shopping each week.

Downloading

I’m a big fan of the whinge. I could whinge for Australia if whingeing was an Olympic sport. But there’s a fine line between getting something off your chest and becoming that person people duck into doorways to avoid. Make sure you know someone who will warn you before you cross that line.

But sometimes, no matter what you do, you just can’t get out of your funk.

That’s when you need to talk to your family or friends or head to the websites of support organisations such as Arthritis Queensland or Beyond Blue for resources to help you cope with your RA or depression.

If you’re feeling particularly overwhelmed and unable to cope, you should visit your doctor who can advise on options such as counselling or medication.

Arthur halts dream trip

Cancelling my long-awaited trip to South America because I couldn’t have a yellow fever vaccination made me resent Arthur like I did as a kid who couldn’t roller skate.

It’s not fair that having rheumatoid arthritis (RA) firstly stopped me from rolling around a skating rink and, now, travelling to my dream destination.

Specifically, it’s the immunosuppressant drugs that keep Arthur pacified – arava and methotrexate – that prevent me from having the yellow fever vaccine.

For the vaccine to be effective, I’d need to stop taking the medication 2 weeks before and 2 weeks after vaccination, pretty much ensuring I’d have a flare up.

And, when I’m feeling like I’ve been hit by a Mack truck, there’s a good chance I’d get yellow fever because it’s a live vaccine.

While I could get a certificate to say I couldn’t have the vaccination because of medical reasons, and take my chances in the Amazon, I’m immunocompromised so there’s a good chance I’d succumb to the virus.

Let’s just say my rheumatologist wasn’t very supportive of my travelling anywhere with yellow fever.

Once I stopped crying and moaning about things I couldn’t change, I realised I’d made the rookie mistake of not investigating vaccination requirements before booking an overseas tour.

In my head I’d packed my bags, including the Dencorub in case of aches, light hoodie in case of cold on the plane and Birkis sandals for comfortable walking in the Brazilian heat.

I’d written a reminder note to ask the doctor for extra scripts to stock up medication for the trip and a letter explaining why I was carrying so many prescription drugs overseas.

I’d even dragged my bag down from the top shelf in my cupboard to check it was still light enough to carry and the wheels worked.

But I’d neglected to check vaccination requirements.

That’s something that needs to be done in the early stages of planning – and something I did first before booking my next best adventure holiday…

A Southern Africa safari.

Handy tips for daily living

After failing in my third attempt to remove the plastic covering the cheddar bound for the Christmas Eve cheese platter, I conceded defeat and handed the less-than-sharp knife to a hovering Mum.

Knowing me well, Mum had been watching to make sure I wasn’t in danger of losing a finger, and waiting for me to ask for help.

Having had rheumatoid arthritis (RA) for a long time, I’m used to people looking askance at the way I do things manually, such as chopping vegetables or carrying groceries, to compensate for my dodgy hands.

My methods may look a little clumsy or time consuming but usually they work and I don’t have to ask for help – handy if you live alone.

I just need a little patience, perseverance, creativity and the help of simple assistive devices, either bought specifically for the purpose or adapted from household items.

My electric can opener is indispensible for opening tinned food, as is my hand-held jar opener, bought from a hardware store.

The jar opener doubles as a plastic milk container lid opener and childproof pill bottle opener.

Maybe you shouldn’t try this at home – but I find toenail clippers are perfect for keeping my fingernails trim and shapely.

A long-handled wooden spoon is useful for rubbing sunscreen or moisturiser on my back and shoulders.

I can wear dresses with zips if the zipper has an ‘eye’ in which I can clip a large safety pin which is fastened to the end of a long, thin, flexible, macramé rope.

After putting on the dress, I simply reach behind and grab the end of the rope, pulling up the zip.

Buttons on denim jeans or shorts can be hard to do up with sore fingers so enlarging the buttonhole by carefully cutting one of the edges just a millimetre or two with a sharp pair of scissors works a treat.

Looping heavy grocery bags over my forearms, instead of gripping them by hand, has helped prevent my fingers from deviating.

As has lifting saucepans from the stove with both hands firmly on the handle.

If you’d like more information about managing day-to-day tasks with RA, I recommend speaking to an occupational therapist or visiting the Arthritis Queensland website.

If you have any handy tips you’d like to share that have helped make your life with Arthur easier, I’d love to hear from you.

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.