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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.


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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


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27/May/2018

Support is available from people just like you

There’s nothing like talking to someone who knows what it’s like to live with your health condition.

They struggle with the same things you do. They’ve gone through similar experiences, upheavals and successes. They’ve felt similar emotions and thought similar thoughts.

They really understand, in a way that’s almost impossible for people who aren’t in the same boat to understand.

This is peer support. And it can be so helpful and valuable.

Meeting with others like yourself, you can share information, provide support, get advice, and know that you’re not alone.

Support groups can be found all over the place. Some meet face-to-face, while others connect via social media and websites.

We can help you find one near you.

Contact us today on 1800 263 265 for group details.

‘I could walk a mile in your shoes, but I already know they’re just as uncomfortable as mine. Let’s walk next to each other instead…’ – Lynda Meyers


musculoskeletal health australia

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

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