BLOG

upside-down.jpg
01/Apr/2020

Our worlds have turned upside down and inside out. Just when you think you’re getting the hang of the new normal of isolation and staying at home, a new restriction comes into place. These restrictions are vital to help prevent the spread of a highly infectious virus, but they do make it hard to find your balance.

It’s no wonder most of us are feeling anxious, stressed, upset, angry, vulnerable and a whole host of other emotions. When you also have a musculoskeletal condition, especially if you’re immunocompromised, all of these emotions may be heightened.

That’s why as well as looking after our physical health, it’s really important we look after our mental health.

We’ve put together a list of many practical things you can do to look after your mental health during the pandemic.

A quick warning, this is a ridiculously long blog 😉 but there’s so much we wanted to share with you!

Read it all, or just read the bits that are relevant to you at the moment and revisit as things change.

Find a new routine

This will obviously depend on what you need to do in your day, if you have people depending on you, if you’re working from home, have school work (or need to help others with school work) etc.

It might help to sit down with the members of your household and create a calendar that includes everyone’s commitments and needs. Things to think about when creating your calendar:

  • Get everyone involved. We’re living together in close quarters at the moment, without many of our usual distractions, sports and our friends, so it’s vital that everyone feels that their needs matter and they’re being heard.
  • Include specific time for fun stuff, exercise and connecting with family and friends. Dust off the board games – who doesn’t like a good game of Twister, Monopoly or Yahtzee?
  • Keep your weekends separate – this is really important so that you can get your chores done (sadly the laundry doesn’t stop because of a pandemic) and you have time to do creative stuff, exercise, and get a break from the workday routine.
  • Be very clear on your hours. It’s really easy to lose track of time. If you find this happening, set reminders on your phone to alert you.

Stay informed

There’s a lot of information out there about COVID-19, which can add to our anxiety and stress. But we need to stay up-to-date with factual, current information. Visit the Australian Government website for the latest from the government. Visit our website, follow us on Facebook, and/or call our Help Line weekdays on 1800 263 265 or email our nurses helpline@msk.org.au for info and support.

And once you’re up-to-date, put the news away for a while. It really doesn’t help our mental state to continually check what’s happening. Consider having a specific time (or two) when you check the latest news, and then go back to doing other things.

Get some sleep

We often struggle with sleep at the best of times, because we live with chronic pain. Unfortunately anxiety and stress can make this worse. But it’s important that we do all we can to get some decent sleep. Our physical and mental wellbeing is inextricably linked to good quality sleep – and getting enough of it. Read our recent blog for some practical tips on getting a good night’s sleep.

The Conversation has also recently written a useful article about the importance of sleep, especially now: Sleep won’t cure the coronavirus but it can help our bodies fight it.

Exercise regularly

We’ve talked, and will continue to talk about the importance of staying active – both during a pandemic (still blows my mind to say that) and during normal times. It helps us sleep better, maintain our weight, manage our pain, reduces our risks of developing other health conditions, and it improves our mood. There’s very clear evidence that regular exercise reduces stress, anxiety and feelings of depression and boosts our self-esteem. So exercise outdoors if you can (while maintaining physical distancing), and exercise in and around your home. Read our blog about exercising during the pandemic.

Eat well

Hands up who’s eating more often, and more unhealthy food choices at the moment? 🙋‍♀️🙋‍♂️ Food is a comfort to us all…and when we’re feeling a bit lost many of us reach for the food that makes us happy. But remember this gratification is short lived. Try to stick to your usual meal times, and gather everyone together and discuss your day (as long as you’re all well). If you live alone, use one of the many apps available (e.g. House Party, Hangouts) and share a virtual meal with a friend or your family.

Be careful with alcohol and other drugs

The temptation may be there to drink a little more, or use other drugs to make you feel better. But any mood changes you may experience are temporary, and drugs and alcohol have a negative effect on our mental health and our wellbeing.

Stay connected

Many of us are feeling the effects of being isolated, even if we live with others. We’re missing our circle of friends, our various social groups, our workmates and our extended families. There are many ways we can stay connected and keep up with each other’s lives. The simplest way is to pick up the phone and call. Avoid discussing the doom and gloom of the news cycle if you can. Instead focus on the new things you’re doing, your triumphs, how you’ve been able to work through challenges. And if there is something really worrying you, or making you anxious or upset, discuss it with someone you trust. Don’t ignore it. Get it out in the open so you can deal with it. As well as calling people, use tech to connect. There are a ridiculous number of ways to connect with others using social media platforms and apps. If you’re not sure where to start, read From Houseparty to Hangouts, these apps can help you stay social in coronavirus isolation by ABC News.

Create something

Channel your inner creativity. It’s a great way to relieve stress, and distract yourself from the worries of the world. There are a lot of online tutorials and info to help you: write a poem/song/novel/blog; learn a craft/language/skill; grow a flower/herb/vegie garden; paint a landscape/portrait/abstract; organise your home/office/life; cook a new recipe.

The sky really is the limit. So ask yourself – what have you always wanted to do if you just had the time??

Turn off the screens/limit news

Although a lot of the tools we’re using to deal with this pandemic are online, we need to set ourselves limits. Too much screen time, too much news – it’s just not good for us. As with everything, moderation is key. Turn off the electronics and pick up a book, or go for a walk, weed the garden, do some deep breathing exercises, talk with someone, try mindfulness. Do anything else but look at your screen or the news…at least for a while.

Give yourself a break

Our world really is crazy at the moment, so it’s important to recognise that and give yourself a break. We’ve not had to deal with a pandemic on this scale before, so be kind to yourself, and if you have a bad day, or a meltdown, that’s ok, we’ve all done it. You’ll brush yourself off and keep on going. And if you feel like you’re not finding it as easy to move on, or get past these moments, it might be time to talk with your doctor about getting professional help.

Get help when you need it

This may be psychological help if you feel like you’re not coping emotionally, financial help if you’re worried about your money situation or legal help if you have some concerns about your employment rights, or you have questions about writing your Will or setting up Powers of Attorney. Getting expert advice can help relieve some anxiety.

Take heart

🧡We’ll get through this. We may have to change and adapt, but we will come out on the other side of this pandemic. We just have to be patient, follow the advice and guidance of our health professionals and the government, look after each other and be creative with how we live during these crazy times.

More to explore


telehealth.jpg
01/Apr/2020

“We’re not in Kansas anymore Toto. Welcome to our brave new world”.

OK, so I’ve mixed my classic Hollywood movie and a classic Huxley novel, but we really are in unchartered waters!

Just this week the Federal Government announced that telehealth will now be available for everyone. It’s one of the many measures the government is introducing, to enforce physical distancing and slow down the spread of the virus.

So what is telehealth and how is it even possible? 🤔

Simply put telehealth enables you to consult with your health professional over the phone or through a videoconferencing app (e.g. Zoom, FaceTime, WhatsApp).

Depending on the technology you have available, and how comfortable you are using it, you might have a conversation over your phone with your doctor (like any other phone call), or you may interact face-to-face through a videoconferencing app.

Don’t worry though – if you’re only comfortable talking on your phone, that’s fine. You don’t have to download apps and learn how to use them. But if you’re interested, they’re easy to use. They just take a little practice.

Will I have to pay more for telehealth?

No – telehealth appointments will be bulk-billed, so you won’t be out of pocket. And the apps are free to download and use.

With any new system we need time to adjust

As many of us have discovered as we’ve started working, schooling and just trying to entertain ourselves at home, there may be some teething issues.

If you’re calling over the phone you’ll need to adjust to not seeing your doctor face to face; if you’re using an app you’ll need time to adjust to using new technology.

And if you’re using an app you may also experience slower internet speeds, which may affect your consultation. This is more likely to happen during busy times when everyone’s trying to get online (streaming their favourite shows, catching up with friends, watching cat videos).

As with any appointment, there can also be issues with time. Your health professional may be running late, they could be having tech issues, other patients needing more time, a medical emergency, or because they’re human and also need to adjust to working from home. You may be running late too. So it’s vital we all try to be patient, and give ourselves and others some leeway as we navigate this new ‘normal’.

But we can make it easier

We’ve identified these potential issues not to freak you out, but to prepare you. So here are our top tips to telehealth harmony.

Be patient – if your doctor is running late, if your internet is slow, if your appointment is rescheduled due to an emergency, be patient. This can be really hard to do when you’re unwell or in pain. You can feel vulnerable and worried, and being stuck at home can be frustrating. But becoming impatient won’t change the situation and will only make you feel worse – both physically and emotionally. Make a cuppa, read a book, do a crossword, talk with your partner/cat/dog/kids – distract yourself while you wait.

However if you have chest pain or difficult breathing, or have a medical emergency, call 000 immediately.

Don’t wait for your telehealth appointment.

Be prepared – before your appointment, make a list of the things you want to discuss with your doctor. Put them in order from the most important to the least. That way you won’t finish your consultation and then kick yourself for not asking X. Also – be aware that your appointment may end earlier than you anticipate if there’s a tech issue or an emergency. So lead with your most pressing questions or concerns, and if you have time, follow with the ones that are less important.

Be kind – our health professionals are doing the very best they can, often under very stressful, trying circumstances. They’re our frontline during this crisis, so please be kind to them. And be kind to yourself. You’re learning new technology or new ways to do things and just trying to stay sane during an insane time – recognise that you’re also doing the best you can. So hang in there.

Talk with someone who cares

Call the National MSK Help Line – our nurses are available weekdays from 9am to 5pm on 1800 263 265 or you can email helpline@msk.org.au. They can help you with info and support about musculoskeletal conditions, managing pain, treatments, accessing services, COVID-19 and much more.

Call the National Coronavirus Helpline – if you want information on coronavirus (COVID-19). It’s available 24 hours a day, seven days a week on 1800 020 080.

More to explore

Supporting telehealth consultations: Helping you get your medicine if you are confined to your home
Australian Government Department of Health, 2 April 2020
As part of the National Health Plan, telehealth can now be bulk-billed and Electronic Prescribing is being fast-tracked. There are options immediately available to support telehealth services so you can get medicine sent directly to you at home.

What can you use a telehealth consult for and when should you physically visit your GP?
The Conversation, 1 April 2020
Some info to help you work out when you should or shouldn’t use telehealth, with a handy infographic to clarify it even further.


distancing-blog.jpg
25/Mar/2020

Ok, so the title dates me…I’m a child of the 80s. Olivia Newton-John was a leg-warmer wearing goddess to many 😊

Sorry to be light-hearted…but I’ll do anything to get your attention.

During this crazy, unbelievable, unprecedented COVID-19 (coronavirus) time it’s important that we embrace the practice of physical distancing, also called social distancing (your choice whether to do this wearing leg warmers, but please, please, please just do it).

It’s the best option we have for slowing the spread of COVID-19 so that we protect the most vulnerable in our community (our older people, people with suppressed immune systems, people with chronic conditions, pregnant women and people with pre-existing health conditions). Obviously, this list includes many of us, so physical distance is important for protecting our own health and wellbeing, as well as the broader community.

Physical distancing also helps us to flatten the curve. You may have heard this term reported in the media and thought – “huh?? What does that have to do with me?”.  In basic terms when we practice physical distancing we reduce the risk of passing on the virus and we’re helping to spread out the number of people becoming infected over a longer period of time. By spreading it out, our health system is more equipped to handle the numbers and not become overwhelmed, which would be the case if we all got sick tomorrow.

And it’s not just us – many of our wonderful healthcare workers will inevitably get sick too. Which will affect the ability of the health system to keep up with the demand. So spreading this out over a longer period of time makes a lot of sense. Read more about flattening the curve here. 

Now more than ever it’s important we stay in contact with the people we care about

Personally, I like the term physical distancing. It’s seems to me to be less isolating and now more than ever it’s important we maintain our social connections (just not physically in the same space). By maintaining our physical distance we can still chat and stay in touch with friends, family and colleagues – using technologies like Skype, FaceTime, WhatsApp, Messenger, Facebook, emails, as well as going old school and actually calling someone (insert gasp here) and even send letters (both WHO and CDC have confirmed that you can’t catch the virus through your mail).

So what do you need to know about physical distancing?

Stay informed. This is really important. Misinformation leads normally rational people to buy more toilet paper they can use in a lifetime, causing shortages for others. It leads to fear, anxiety, confusion and anger. So stay informed with accurate, up-to-date information. Go to our website, we have a dedicated section with up-to-date, reliable and practical information on COVID-19.

Maintain your physical distance. But be careful with the pinwheeling arms (if you’re not a child of the 80s look it up). I saw someone doing that today to emphasise that she had enough space around her and she almost took her husband’s eye out (clearly he wasn’t keeping the recommended physical distance).

We’re advised to maintain at least 1.5 metres between ourselves and others. As a guide if you stretch your arms out to your sides (horizontal with the floor) and imagine this amount of space goes all the way around you. Now imagine everyone you come in contact with has the same amount of space around them. This is how much distance you need to keep between yourself and others.

Stay home. We’ve now entered a period that requires us to stay at home as much as possible. The 1.5 metre space around you is a guide for when you HAVE to go out. We’re being advised to only go out when absolutely necessary – when we need to go to the supermarket or chemist for supplies. If you do have to go out, try to avoid crowds and touching too many surfaces.

Now’s the time to embrace our inner introvert! Think about all the times you said you’d like to do X if only you had the time. Well now’s the time! Learn that language, write that book, do something with all your holiday photos, clean the clutter from your cupboard/house/garage, virtually travel the world, live stream the zoo, tune in to the Melbourne Symphony Orchestra online. You’re not only doing something you’ve always wanted to do, but you’re helping to flatten the COVID-19 curve.

Look after yourself. While you might be tempted to go full out couch-potato, you need to stay active, eat healthy foods, get plenty of sleep, wash your hands thoroughly and frequently, and generally look after yourself. Also go easy on the alcohol. These things will all help your immune system, and help you feel the best you can. And if you do become sick – whether it’s with COVID-19, a cold or some other illness, you’ll do better if you’ve been looking after your health.

Check in with others. There are many people on their own who may become isolated during this time. Call them. If you don’t know them (for example an elderly neighbour) leave them a note with your phone number and let them know you can help them out if they need groceries or other supplies. Also some people may just need to hear another voice and know someone is looking out for them.

More to explore


Shirani2.jpg
13/Mar/2020

Having children, self-belief and acceptance

Written by Shirani Wright

Read part 1 of Shirani’s story.

Another thing that was very hard for me – and I’m sure turned out much better than the doctors thought – was having my children. I don’t think my rheumatologist was overly keen on the idea, but he knew me well enough, not to try and talk me about of it as he knew that nothing was going to stop me and nothing did!

I was advised that I had to come off my methotrexate for three months before we started trying to get pregnant. This is because it’s a category X drug for pregnancy and can cause serious birth defects, including spina bifida. This was a bit scary.

The doctors thought that, by coming off methotrexate, I might have a big flare-up and not be able to even get pregnant. I came off methotrexate and luckily for me, no flare-up. They also thought if I did get pregnant there were a lot of other possible complications that could have resulted in the baby being born early.

My doctors pretty much implied I was too sick to get pregnant and carry to full term. Well, you know what they could do with that idea!! Even if I had to sit in bed for nine months and not move, I was determined to have children and that’s what I did. I have two beautiful girls, Chloe and Jacinta. I’m not going to say it was always easy, but it was worth it. I feel extremely luckily to have my two healthy girls.

I’d like the all the parents of kids with arthritis, and children with arthritis, to know it’s possible to have children of your own if you want to, even if you do have arthritis.

Having arthritis does make looking after my girls difficult sometimes, but I wouldn’t have it any other way. I wasn’t about to let arthritis stop me from having children!!! It’s easier, now they are both at school. I’m also very lucky to have a very supportive husband who understands my health issues and does a lot with the children as well as working full time and supporting me emotionally.

I also get emotional support from my friends, and family, but I’ve found that the Young Women’s Arthritis Support Group has helped greatly, as everyone in the group knows what it’s like to be in pain, be on medication, have bad days and everything that goes along with having a chronic illness.

I believe having arthritis has made me a strong person mentally and that it has helped me develop a positive attitude towards life. It often hasn’t been easy but I’m not one to back down from a challenge. I sometimes wonder what I’d be like as a person if I didn’t have arthritis.

We all have our limitations whether we have a disability or not. There are those who might not be able to walk but they might be a terrific artist. People with a disability can have just as fulfilling a life as someone without one. We can do anything we set our mind to. It might just take a bit of extra work but we can do it.

If I can give any advice to children with arthritis I would say, we need to believe in ourselves. We need to accept that we have a disability and that we have limitations but we shouldn’t let our disability define who we are. We are more than our disability.

To leave you, I’ll finish with a thought. Never give up and always shoot for your dreams!


Shirani.jpg
12/Mar/2020

Growing up, school and working

Written by Shirani Wright

I wake up in the early morning to go to the toilet. I look at the time – 5.00am – early enough to take my tablets. I turn on the lamp and automatically reach over and take my prednisolone, plus eight other tablets so they have time to work before I need to get up and get my girls ready for school. I go back to sleep until my alarm goes off at 6.50am and then I start my day.

Taking medication is a part of my life as I have systemic juvenile idiopathic arthritis. I was three and a half when it all began.

It started when I got bronchitis. My condition worsened and I was in hospital for six weeks. No one knew what was wrong with me. The doctors thought I had pneumonia, and although I was on IV antibiotics I just wasn’t getting better.

I was transferred to The Royal Children’s Hospital, where I had a number of investigations on my lungs and they discovered that I had a massive amount of inflammation. With this discovery and further tests, I finally had a diagnosis – systemic juvenile idiopathic arthritis or SJIA, an autoimmune condition that has stayed with me to this day. Not many people know that lung involvement, like I had, can be a part of some types of arthritis. And for me, joint involvement happened a bit later.

Since I was diagnosed at 3, I don’t remember not having arthritis. I think maybe this has made it easier for me than other people I’ve met who got arthritis at an older age, who might have been used to a certain life. I don’t remember what it’s like not to be in pain or discomfort every day or not to regularly go to the doctors, have tests, and be in hospital. It’s all just a part of my life and I’ve accepted it.

My twin sister and I had tennis lessons for a while but I remember I couldn’t run fast enough. I also did gymnastics too, so as you can see I didn’t let my arthritis stop me! My sister played basketball with a school friend for a time, I didn’t because of my arthritis. I don’t remember being particularly upset by this. I used to go and watch her team play and sometimes score for them.

At school, my arthritis didn’t affect me that much. I pretty much always joined in with PE unless I was having a particularly bad day. Sometimes if we had to walk somewhere from school my mum would organise for me to get driven by one of the teachers and I could always take a friend. Sometimes I’d be late getting to school if I was waiting for my tablets to work.

I felt like I had a bit of support from Musculoskeletal Australia growing up but not as much as there is available now. The Arthritis Foundation of Victoria (as it was known back then) ran camps during the summer holidays as a way for young people with arthritis to get together, meet each other etc. On these camps, they offered workshops run by doctors, massages and free time. It also gave us the chance to meet other young people with arthritis.

Up until those camps, I think I had only met one other child with arthritis; that’s why I think MSK Kids is a really great idea. It gives kids and young people an opportunity to meet each other and support each other. It also gives their parents the same thing. I’m sure my parents would have liked to have known some parents of kids with arthritis.

One thing I didn’t like about having to take medication for my arthritis is that because I’ve taken prednisolone since I was 3 (and I’m still on it 41 years later) it has stunted my growth. So when I was 15 years old, I looked 10 or younger, and that really used to bug me! I remember once I was in a shop with my mum and the shop assistant said, “are you mum’s little helper” and I got really upset. As my mum said though, it’s not her fault she doesn’t know. Now that I’m an adult, being short doesn’t worry me really from a social point of view, it’s more on a practical side when I sometimes have trouble reaching things at the supermarket, or glasses on shelves etc.

I think one thing that got me through childhood with arthritis,(apart from my mum)
is a positive attitude. Because I have arthritis there are things I can’t do. However, I try to concentrate on what I can do rather than what I can’t. This isn’t always easy, but I try and take the attitude that there’s no use worrying about what I can’t do, as that won’t change the situation. I try not to get grumpy or sad about it as this doesn’t change anything. It just gets me down and isn’t much fun for the people around me.

It’s not always easy to accept my limitations but I try and think “well everyone, including healthy people, has limitations”. Not everyone can run a marathon but does that mean they’re not as good as someone who can? I would say NO. Those people who can’t do one thing might be able to do something that another person can’t do. A fish can’t walk, but they’re happy.

One limitation I have had to deal with because of my arthritis is that I’m not working.

I left school and went to university and then TAFE. I worked in several part-time jobs over 10 years. I had to change fields of jobs from Nanning to reception/admin work as nannying was too physical. I did try working full-time for a year and a half but ended up in hospital as I often became breathless (which happens a lot with my type of arthritis).

At that stage, my doctor said I needed to cut my hours back. I found this hard as up until then my arthritis had not really limited me in a big way. But the fact that I couldn’t work full time was a big thing. It made me feel like I was sick and not normal.

One of my friends didn’t understand this. She said it was good that I only had to work part-time. What she didn’t understand was that working part-time wasn’t a choice! I didn’t choose it, I had to do it for health reasons. After some time and thought, I accepted this change and continued with my life. I no longer do any paid work as my health isn’t up to it.

Read part 2 of Shirani’s story.


cortisone-foot.jpg
22/Jan/2020

Written by Steve Edwards

“A cortisone injection? You want to stick a needle in my sore foot?”

Your health care clinician has suggested you have a cortisone injection into your foot. As with any medical procedure, both of you are best advised to discuss the benefits and risks before proceeding. It helps to know what cortisone is, what it does, and why it’s been offered to you.

Cortisone is an anti-inflammatory medication that’s often used to treat musculoskeletal conditions. It’s a synthetic version of cortisol, a hormone that naturally occurs in your body. Injected into the affected area, cortisone can lower inflammation and pain, remove fluid, and thin scar tissue or adhesions. So if your clinician diagnoses a musculoskeletal condition affecting your foot or ankle – such as arthritis, bursitis, neuroma, or tendinitis – a cortisone injection is commonly raised as an effective treatment option.

Cortisone injections also contain a local anaesthetic. For certain conditions an injection can be painful, so the anaesthetic may be injected separately before the cortisone to block this pain.

The clinician may or may not use ultrasound technology to guide the injection. For pain relief in the foot or ankle, research finds no statistically-significant difference between procedures conducted with or without ultrasound. Interestingly, trials on cadavers injected with dyed cortisone show how it rapidly spreads from the injection-point to adjacent tissue, indicating that pinpoint accuracy is not key to effectiveness.

There are several types of cortisone. In most cases the clinician will administer a long-duration cortisone, taking effect within 1-3 weeks, with benefits lasting between 1-9 months, depending on the condition and its severity. There’s a clinical consensus that no more than 3 injections should be administered to the same body-part within a 12-month period, though there’s no research literature to clearly support this belief.

After the injection, you can quickly return to most activities. The clinician may recommend you avoid strenuous physical exertion such as gym workouts or running for a few days, so the cortisone isn’t displaced from the target tissue.

As for risk-factors, there’s been research into whether the injection may risk tearing tendons in the target area. There’s no recorded case of this in human trials, though it has occurred in trials on dogs and horses. There were cases of more general tissue damage recorded in early trials on American gridiron players, but various factors could have produced this result – the needle used, the amount of fluid injected, and the subjects receiving multiple injections within a short period.

No medical procedure has a 100-percent success rate, but a single cortisone injection administered by a trained clinician is both safe and effective in providing medium-term pain relief. Side effects are minimal, and the benefit to your musculoskeletal condition is potentially vast. And for some foot-specific conditions – such as a neuroma (pinched nerve), or plantar fasciitis (heel pain due to scar tissue) – a cortisone injection can often be a cure.

Our guest blogger

Steven Edwards is a trainee foot and ankle surgeon with the Australasian College of Podiatric Surgeons. He also teaches pharmacology and foot surgery to undergraduate podiatry students at La Trobe University.


Sam-Buffy.jpg
20/Jan/2020

How we discovered Sam had arthritis

My son Sam is now 18 years old. He was diagnosed with juvenile idiopathic arthritis (JIA) just after his 13th birthday.

Seeing your previously healthy and sport-loving son crawling down the hall just to get to the bathroom is heartbreaking. The impact on our whole family was enormous. You just can’t imagine the changes you suddenly have to make. One minute we were dealing with all the normal teenage activities and the next we had an occupational therapist talking to us about putting grab rails and mobility aids through our house. The whole future you envisage for your child changes in a split second.

Sam complained for a few weeks of sore knees but like most mum’s vying for that “Mum of the Year trophy” I pretty much ignored him, figuring it was too much sport or growing pains or something along those lines.

It was the Queen’s Birthday long weekend and he had a weekend off sport so I thought ok, this will give his knees a rest and a chance to settle down and everything will be fine. We went for a short walk as a family on the Sunday and after about ten minutes he said to me “Mum, I can’t walk anymore, my knees are killing me”. We headed home where he lay down on the couch and after an hour or so he got up and discovered that it wasn’t just his knees anymore, the pain had now spread to his ankles and hips.

The next morning I took him up to our GP who ran a range of blood tests and told me she wanted to see him again on the Friday but if it got worse before then, to take him to the ER. On Wednesday morning he woke up and the pain had also moved to his wrists, shoulders and elbows. We headed out to the Monash Hospital where we began what would be a long relationship with the wonderful paediatric rheumatology team there.

Sam was officially diagnosed with JIA two weeks later and started on methotrexate that day. His pain got worse and worse and he was admitted to the hospital for a week for further testing. After ruling out a lot of other nasties, he was eventually diagnosed as having pain amplification syndrome (PAS) also known as amplified musculoskeletal pain syndrome (AMPS).

To be honest, this floored me more than the diagnosis of JIA. I really felt that they didn’t know what he had, so they were just pulling something out of thin air! The PAS was harder to deal with in many ways than the JIA. With JIA I felt we had a well-trodden path to follow whilst with the PAS it felt very hit and miss.

We saw a pain specialist through Monash and Sam was put on a lot of different drugs with various success. Eventually we found some websites and read a lot of information on pain and educated ourselves about what pain is and the importance of movement. Sam did a lot of hydrotherapy and got moving and strengthening his body once again and slowly we began to see improvement.

Sam missed the majority of the second half of year 8 and a similar amount of year 9 before finally finding the right combination of medications that worked for him. The burden of the pain was enormous but missing out on school, playing sport and contact with his friends was even harder. The medication he was on also made him put on a lot of weight and some of the kids at school could be cruel.

I was no longer able to work as Sam needed my support at home for both his day to day care as well as his multiple appointments so I approached Musculoskeletal Australia about volunteering half a day per week. To be honest it also gave me a much needed break from the stresses of suddenly becoming a full time carer! I started working on the Help Line which not only gave me vital information about JIA but gave me access to a knowledgeable nurse as well as a number of other volunteers who could share their own stories with me.

Along with a great rheumatology team and the correct medications, Sam works hard on his fitness to ensure he remains well enough to do the things he wants to do. He also needs to pace himself which, like many teenagers, he does with varying degrees of success! Although he still has challenges that other teenagers just can’t imagine, he’s now studying full time at Uni, has a part time job and is able to participate fully in life – just as any 18 year old should be doing.

On a side note – I’m now working at MSK Australia 3 days a week running the MSK Kids program. It’s a program I love and am very passionate about. You can contact me about MSK Kids Tuesdays-Thursdays on 8531 8039 (1800 263 265) or buffy@msk.org.au


cats-1200x795.jpg
12/Sep/2018

As someone who wears a lot of black you might be forgiven for thinking that adopting a ginger coloured cat was probably not the smartest thing to do. Sure, it’s a little frustrating when you’re in a hurry and you notice the fur coating your clothes. Or when your house looks like a giant fur-ball.

But armed with my new best friend – the lint roller – I know that the benefits of owning a pet (in my case two very cute cats) was one of the best things I could do for my health and happiness.

When you live with a chronic condition, you often go through periods when you’re up, and then you’re down. It’s just the nature of the beast. But sometimes those downs can be really down. You’re in pain, things can look bleak, and it can be hard to ‘turn that frown upside down’.

But I find that the crazy antics of two young cats – chasing after toys, wrestling with each other, ninja fighting something only they can see – has a great impact on my mood. Sure, the pain is still there, but the distraction they provide, and the unconditional love, has real health benefits.

Research has shown that owning a pet can:

  • decrease cholesterol levels and blood pressure
  • decrease feelings of loneliness
  • reduce stress
  • improve mood
  • increase opportunities for exercise and outdoor activities.

I’m sold – let’s go shopping!

Hold your horses for just a minute. If you’ve been thinking of getting a pet, and you think now’s the time, it’s important that you do your research. It’s easy to get swept up in the excitement of adopting a pet, and you want to make sure the fit is right for you and the animal. The RSPCA has several resources to help you decide on the right pet for you. Check the More to explore section below for links.

I love animals, but I can’t have a pet 🙁

Sadly owning a pet isn’t an option for everyone. They can be expensive, you may live somewhere that doesn’t allow pets, you don’t have space, or you work long hours and aren’t home very much.

If that’s the case, but you want to be around animals more, there are other options:

  • offer to walk a family members/friends/neighbours pet (I saw a person walking an alpaca on a lead recently!)
  • volunteer time at an animal shelter – there are lots of things you can do – grooming, feeding, playtime socialisation, patting cats, walking dogs
  • look after a family members/friends pet when they go on holidays
  • think outside the litter box – there are others pets you can adopt that may be an option – fish, birds, spiders, mice and rats. They may provide a bit more flexibility than the traditional cat or dog ownership
  • watch videos online. The internet is practically one big animal video…cute cats, playful pups, sneezing pandas. It’s all there waiting for you to find. And even though you’re not in physical contact with an animal, this connection can boost your mood and relieve stress.

More to explore


Thalia-blog-photo-1.jpg
02/Aug/2018

Written by Thalia Salt

My name’s Thalia and I’m twelve years old. I was diagnosed with osteoarthritis when I was five years old, which was caused by a joint infection in my left hip when I was ten months old. I like to sing and act, and I love hanging out with my friends after school.

Living with arthritis from such a young age is hard, but it has some advantages. I’ve been finding different ways to cope for my whole life, which means I have some quite effective strategies up my sleeve. But there are many things that aren’t so great. I learned to walk with arthritis, so my gait was awkward. I don’t know what it’s like to have no pain, and sometimes when I do have lots of pain my body tunes out of it until it’s unbearable.

The arthritis has also gotten in the way of my life outside of school activities. I have to sit down when I sing, and I’ve had to do several performances in my wheelchair. When I’m with my friends, we have to limit our activity accordingly. I haven’t been able to participate fully at school and have had to resort to a mobilised scooter in the past just to get around.

This story has a happy ending though. In June 2017, I had a total hip replacement. Since then, I‘ve been walking up to 3km, running, getting around school without my walking aids. I’ve also been swimming and riding my bicycle.

Something else that’s changed is the amount of medication I’m taking. Before, I was taking a large range of medications, including some very strong painkillers. Now I take hardly any medication. My personal lifestyle has also been greatly altered. I’ve been able to move around the house freely, participate in my outside of school activities like any other person, although I’m still not up to standing up for more than a few minutes. I’ve been discharged from the physiotherapist and have started to see a personal trainer.

In the future, I should be able to participate in P.E. at school, stand up for as long as I like, walk around my neighbourhood with my friends after school. I should have no pain, which is something that I’ve not experienced before. I can’t wait to go to the beach without my crutches and being able to do whatever I want when I get there, without worrying about the consequences.

My top 5 pain management tips

  1. Heat packs. Something that affected me a lot was the cold in the dead of winter. A heat pack when relaxing can often ease the pain, particularly when I go to sleep.
  2. Crutches. These help take the stress off your joints. Obviously this only works for pain in your legs.
  3. Reducing movement before a large amount of exercise. If I know that I’m going to participate in an activity that requires a lot of physical movement, I’ll take it easy for a few days, as if I’m “saving” the soreness for later.
  4. Not constantly being on all the meds. That way, when you’re in a lot of pain you have something you can take.
  5. Stretch constantly. I know that maintaining the right amount of exercising and protecting your joint is hard, but a large cause of pain is stiffness from not moving enough. So, you need to stretch. A lot.

Our guest blogger

Thalia is a positive ambassador for young people living with arthritis and chronic pain.

She’s worked tirelessly to raise the profile of arthritis in young people and how it affects them. She’s held fundraising events, received many awards, created a Facebook page, a vlog on YouTube about her surgery and much more.


hands-1200x795.jpg
02/Aug/2018

Gathering your all-star support team

Written by Amanda Sobey

Attempting to take control of your chronic condition can at times be a daunting and uncertain challenge. Ensuring you have a strong team around you to help tackle each milestone, step by step, can make it feel achievable.

So who might be in your personal support team?

Health professionals

Depending on your individual needs, your team may be made up of a variety of health professionals. These could include your GP, rheumatology nurse, specialist, pharmacist, physiotherapist, rehabilitation practitioner, occupational therapist, nutritionist or dietitian, physiotherapist, remedial massage therapist, acupuncturist, health coach, counsellor, podiatrist, or your exercise physiologist. Share your goals with your health practitioner up front to maximise the limited time in your appointments and so they can help you progress.

Your personal cheer squad

Surrounding yourself with people who lift you up and encourage you to take charge of your condition can be empowering.

Family and friends

Let them know how they can help you and keep them in the loop as you go along. Let them celebrate the small wins with you. Examples could be receiving positive results of reduced inflammation from your latest blood test, that you managed to walk around the block comfortably, or that you had a pain-free night’s sleep. They might be able to help you hang out that load of washing or put a home cooked meal in your fridge. They can provide a second pair of ears when you need to off-load, question information you’ve been given or accompany you to your next medical appointment. They can also be great companions for a belly laugh, keeping active and getting out of the house!

Peer support group contacts

Being able to connect with people who are going through the same challenges can mean the world. This might be through online social networks or contacts you’ve made at meetups. Group members will be at various stages of their conditions. Some will be newly diagnosed, others may be long-time chronic illness warriors. They’ll be happy to share their experiences and provide insight based on what has helped them.

Studying?

Consider letting your teacher or course convenor know about your condition, so that they can provide assistance if you need to ask for an extension, or are unable to attend a class. It’s also worth finding out about other support services available at the school or university you are studying with.

In the workplace

If you feel comfortable, let your employer or HR Manager know about your condition so that they can provide flexibility, if and when you need it. They’ll be appreciative of any information you can share with them about your condition, so they know how best to help.

On the road to wellness

With the right support around you, taking control of your chronic condition can feel even more possible. Keep your care team in the loop, share your highs and lows and be sure to celebrate each milestone on your wellness journey.

Our guest blogger

Amanda Sobey is a co-founder of Young Adults with Arthritis+ (YAWA+), an online peer support network for young adults in Australia aged 18-35 with arthritis and related chronic conditions. Amanda was diagnosed with rheumatoid arthritis at age 22 and is passionate about raising awareness and helping others on their wellness journey.

For more information please visit the following links:

Facebook: www.facebook.com/yawaplus
Twitter: www.twitter.com/yawaplus
Instagram: www.instagram.com/youngadultswitharthritisplus




Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.

Useful Links


Key Conditions

Copyright by Musculoskeletal Australia 2018. All rights reserved

ABN: 26 811 336 442ACN: 607 996 921