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.

Maybe it’s not the peroxide

It's hard to see the light on brain-fog days.

It’s hard to see the light on brain-fog days.

Ask anyone who knows me well and they’ll tell you that sometimes I can be a little ‘vague’.

Like the time I confused my nephews’ birthdays and the older boy received a present from me on his brother’s birthday.

Or the time I came home from a two-week holiday to find my front door unlocked.

Luckily, The Absent-minded Aunty lives in a secure unit block.

Sometimes it takes a while for things to sink in or I have trouble finding a word or even stringing a sentence together.

This can be a tad embarrassing because I make my living as an expert communicator.

Back in the day I blamed the late night partying.

Nowadays I blame the long working week, too much late night TV or whatever myriad things I’m worried about.

I’ve even blamed the peroxide that makes me a blond.

That was until I read a post about ‘brain fog’ on Swell Gals, a Facebook group for women with arthritis.

It appeared my vagueness, a.k.a. brain fog, might be connected to my rheumatoid arthritis (RA).

A consultation with Dr Google revealed that while brain fog wasn’t a medical term, many people with RA experienced thinking and memory difficulties.

The possible, but unproven, causes of brain fog include:

• cardiovascular disease risk factors such as high blood pressure, high cholesterol, smoking and obesity
• depression
• fatigue
• oral corticosteroids
• pain.

Coffee and a couple of Tim Tams may be good, instant fixes for brain fog but I’ve found once I hit the sugar slump, my concentration deteriorates.

Better, longer-term remedies include:

• a full night’s sleep. Inflammation or a bad night’s sleep can make you feel tired and fatigued. Keep your bedroom cool, dark and comfortable, and avoid caffeine and alcohol. Use a pillow that supports your neck and a comfortable mattress that isn’t too soft or too hard. See your doctor if you need help with pain management, sleep medication or better sleeping habits.

• exercise. Research shows that just 20 minutes of moderate exercise helps you to think better but don’t work out too close to bedtime because it can make you too energized to sleep. Talk to your doctor or physiotherapist about the best exercises for you.

• a well-balanced diet. A diet low in saturated fats, high in fibre and including fruit and vegetables is vital to maintaining a healthy weight and overall wellbeing.

• good emotional health. Talk to your doctor if you often feel depressed or anxious.

• well managed cardiovascular disease, if you have it. If you have high blood pressure or high cholesterol, work with your doctor to lower your numbers.

• organisation. Write down important meetings, events, and to-do list tasks in a day planner or in your smart phone or tablet. Try to save the most brain-intensive tasks for times of the day when you know you’re most alert.

• ask your doctor how you can keep or improve your brain power. Tactics may include programs or activities that help your memory.

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.

10 Arthur-related Q&As

As my solo departure for a distant land approaches, I’m reminded of the inevitable questions I’m asked when strangers notice the manifestation of my constant companion Arthur: my dodgy hands and feet.

Don’t get me wrong, I’d rather people ask me questions than stare because they don’t want to be intrusive or offend me. I get a bit paranoid when people stare.

So just in case you’re curious, these are the answers I usually give to the 10 questions I’m most asked about my experience with rheumatoid arthritis (RA):

1. Does it hurt/do you get much pain?

Pain has different degrees. I always have some degree of pain, usually minor, which I can ignore. For example, if I let myself think about it, the ball of my foot behind my big toe feels sore where it rests on the carpet but it’s not worth whingeing about. Luckily I don’t have too much pain of the highest degree where it hurts to breathe, move or get out of bed, let alone whinge.

2. Do you take any drugs?

I’m on that many pills and complementary medicines to minimise pain, swelling, stiffness and deformity it’s lucky I don’t rattle when I walk. I’ve been taking a combination of methotrexate, plaquenil, prednisone, arava, folic acid, actonel and somac for quite some time. My rheumatologist and I have discussed switching to biological drugs if/when this combination is no longer effective in controlling my RA.

3. Have you tried alternative medicine/therapies?

Yes. Not long after I was first diagnosed with Juvenile RA in the late ’70s, my parents took me to a specialist in Chinese medicine for an alternative treatment to the 12 dispirin a day prescribed by my GP. They were worried about the serious side effects of taking so many painkillers. Arthur was content on the herbal concoction for a long while but after a serious flare-up, my mum sought help from another GP. In consultation with the closest rheumatologist 500km away, Arthur was brought under control with a combination of steroids and non-steroidal anti-inflammatory drugs.

I know every medicine has side effects but for me the risks are outweighed by reduced pain, swelling, stiffness and deformity. I keep informed about the drugs I’m taking and have regular check ups with my specialist. Some people swear by non-medical treatment but I’d need more proof of its effectiveness before I quit medication that is working well for me.

4. Are you on a special diet?

No. I’ve heard ‘nightshade’ foods such as tomato, potato, eggplant or cucumber can aggravate RA but over the years I’ve had no problem with anything edible. I try to eat healthily from all the food groups. Of course if research proves certain foods are better avoided, I’d change my diet.

My 9-year-old self before being diagnosed with juvenile rheumatoid arthritis.

My 9-year-old self before being diagnosed with juvenile rheumatoid arthritis.

5. Aren’t you a bit young to have arthritis?

Granted I don’t get asked this as much as I used to because I fit the stereotype of a person with arthritis, i.e., older, but this was a common question back in the day. RA isn’t ageist. It can affect anyone from newborns to the elderly.

6. How long have you had rheumatoid?

This usually necessitates a quick mental subtraction of 9 from my current age. So, as of today, it’s 37 years.

7. What’s the difference between rheumatoid arthritis and ‘normal’ arthritis?

There’s no ‘normal’ arthritis because there are more than 100 types. The 2 most common are osteoarthritis and rheumatoid arthritis. Osteoarthritis is caused by joint wear and tear, which weakens cartilage. Rheumatoid arthritis is an autoimmune disease where the body attacks and destroys joint cartilage. Both types have common symptoms, including joint paint, stiffness and swelling.

8. How did you get RA/what causes rheumatoid?

I don’t know how I developed RA. It’s thought RA may be genetic and is triggered by environmental factors such as a virus, infection or smoking. Research into a cause is ongoing, including at the University of Queensland’s Diamantina Institute.

9. Is it hereditary?

Studies have shown RA is likely to be hereditary. But in my case, I’m the only lucky one on either side of the family, in 4 generations anyway, who has RA.

10. Is there a cure?

No. Not yet but with the treatments available nowadays, most people lead a normal life and it’s unusual to see deformities like my dodgy fingers and toes.

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.

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.

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.