Being a kid is hard.
Think of all those times you spent in the school yard, playing on the playground or attending friends birthday parties. What can you remember?
I can remember attending many birthday celebrations. I remember being that kid who's mum stayed and helped out as you never knew when my Juvenile Arthritis would become painful or swollen. I never stayed at sleep overs or at the celebrations for long as it was always too much on my tiny Arthritis crippled body. This lead to friendships being hard to maintain.
Why was this?
Juvenile Arthritis.
The only people I could trust that understood what was going on was my family.
I was so afraid that I'd hurt myself or suddenly everything to be painful and no one would be there to help me.
Being older and looking back, this is due to the lack of awareness there was and still is surrounding Juvenile Arthritis. Since beginning Kids Arthritis Australia I have learnt that I'm not the only one with the above problem. Children, their families and careers are hesitant to let go of their child living with Juvenile Arthritis as others don't understand what it's really like.
Through Kids Arthritis Australia I will change this.
This is a National problem, that if not fixed will become worse in the future.
Being a kid is hard, but living with a hidden condition makes the easiest things in life, like attending your friends birthday party hard.
Many people ask: How do I manage to undertake daily activities when there's nobody around to help me?
Well if you lived your whole life in pain and having to find other ways to do the 'simple' daily tasks, when you get older and can sometimes be alone during these times you find away very early on.
For example. I keep all my sneakers (don't like calling them running shoes, as I don't run) with the laces tied up for easy accessibility. Socks on the other hand are much harder, If I need to wear socks for the day I have to ask someone before they head out for the day to do it for me. Besides sneakers and socks I have many shoes, like most females but they all have one thing in common. If I can't put them on alone, then I don't buy them. This is hard sometimes as I can see a pair of shoes in a store and just want to wear them, but know that due to my Juvenile Arthritis it's just not possible.
Another problem is brushing my hair and teeth when my elbows are swollen up like balloons and are stiff as wood. This is where my opposite hand comes in handy. It may take a lot longer to undertake this simple task, but it has to be done.
As many of you know I used to attend swimming lessons every Tuesday. Since my Juvenile Arthritis hip problem that will never go away. Not sure what I'm talking about? Click here. Swimming is another activity that I find hard. My legs due to my right hip aren't strong enough to push me along in the water, so now if I'm swimming my arms have to do all the work. This has it's problems too, as my elbow and wrists joints then are more likely to become swollen.
I hope by now you have realised that nearly everything I undertake always has another effect. Sometimes good other times bad, but always related to my Juvenile Arthritis.
People think that Arthritis only effects the elderly, which in fact it doesn't.
People also think that Arthritis only effects your joints. It doesn't.
There's a flow on effect that I have lived and will continue to live for the rest of my life.
This is happening and happens to 1 in 1000 Children just like me in Australia.
Got a burning question you just want to ask me? Please send me a message through Ask Sarah on the Kids Arthritis Australia website.
It's in our nature to just give out advice, even if we don't fully understand what the other person is living through.
Throughout my life I've been given plenty of non professional advice from people just trying to help. I get it, you can't stand to see Little Sarah in pain, well guess what. There's nothing anyone can do about it, even myself.
Every child living with Juvenile Arthritis is different.
In the weekly #SupportMondays poll in the Australian First Online Support Group run by Kids Arthritis Australia, I asked parents and careers what was the best way to reduce their child's pain.
Number one answer. Medication.
Medication in 2016 is strong, toxic stuff, but you know most of the time it gives the relieve the body so badly needs. It might be overwhelming for the parent to hear all the side effects that come with the medication, but recent research has shown that with early strong medicaiton intervention the child's JIA could be better off later in life.
Second answer. Heat/Cold Packs.
Whether it's winter or summer a child living with Arthritis body needs to be at a good temperature (just like anyone elses). With the interaction of JIA and medication this can be a problem. Hot packs are also good for pain during winter and cold packs are great for sudden joint swelling.
Third answer. Good nutrition and exercise.
I know as an adult eating right and exercising can be hard, but for a child living with Arthritis sometimes and they might not even know it, can get medication cravings (yes another Sarah word).
When I was having Actemra, the craving I received after the infusion was salty foods and it became a tradition that I would cut up fresh potatoes and deep fry them and eat them with dinner that day. It just happened and I don't know why. Exercise can also be hard due to pain and stiffness, but with the help of your local physiotherapist this can be made easier.
Excess weight is bad for anyone, but if you live with Arthritis and you become over weight you place more stress on your already stressed out joints which creates more pain.
What other ways do you reduce pain?
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Living with severe Juvenile Arthritis has it's problems.
Never ending pain, stiffness that just doesn't go away, constant reliant on medication, I could go on..
Driving is one of those things that most people take for granted.
Need more milk or bread? Just jump in the car and drive to the shops.
Got to pick up your friends from the work function? Just jump in the car and pick them up.
In the above two scenarios I've mentioned two of the problems I have l have living with Juvenile Arthritis.
You can never just "jump in the car' to get something. If having Juvenile Arthritis was that easy you'd all want it. Especially at night time it's the hardest.
Driving to and from my weekly radio show is a problem I have especially during the winter months, as by the end of the show it's pitch black!
Living in a small country town doesn't make it any easier due to the lack of public transport, sorry, no public transport at hours that anyone would want to use it.
I'm very lucky to have some sight in my left eye and each time I drive I'm grateful for the privilege.
South Australia has the highest unemployment rate which makes it harder for those living with a hidden condition to gain employment.
I believe I was quite lucky when gaining my first job. I was a member at the gym and had spoken with the manager on a regular basis, but when it came to a second job. It was a whole different story.
I've been through the whole cold canvasing walking around and handing in my resume at every Arthritis friendly work place. Applying online and not getting anywhere.
When I would finally get invited for an interview I knew I had two choices.
1. Disclose my Juvenile Arthritis.
2 Keep it a secret and not disclose.
Everyone with a disability have this choice and is something that children who live with Juvenile Arthritis may one day have to face.
I choose each time to disclose.
Now you're thinking; well it shouldn't make any difference, but it does and disability discrimination happens. I've had to deal with it all my 22 years of living.
Those people who judge as I park my car in a disabled permit zone or those who wonder why I just walked out of the disabled toilet at a venue. This can be seen as disability discrimination in the community.
We all have choices and a young person living with Juvenile Arthritis doesn't just have to deal with the pain and stiffness of the disease, but the thought of gaining employment one day.
This is one of the reasons I began my own business in the health and fitness industry and eventually Kids Arthritis Australia. So that employers and employees will understand what Juvenile Arthritis is and how to support someone who lives with it.
Click here for more resources on this topic and feel free to get in contact regarding this as well. This is why Kids Arthritis Australia and I are here, to support children, their families and careers living with Juvenile Arthritis.
What were you doing at 17 years of age?
Had you finished school? Were you dating your current partner? Annoying your siblings? or all of the above?
At age 17 I asked my mother if she would take me to the Australian Institute of Fitness in Adelaide to apply for study.
This was a HUGE shock to my family, as I'd always despised exercise due to the pain of it all and the lack of motivation due to it. I could understand and control my Juvenile Arthritis more by this age and wanted to learn how to help others through health and fitness.
Sure enough we headed from the Adelaide Hills to the big smoke, hopped on the new Adelaide trams (for the Adelaide residents among you) and headed to the Institute. After a few hours we walked out and I was accepted to gain a Health and Fitness Qualification.
Due to completing Year 11 and 12 at the time, I had to take on the study as part of my SACE. This was a challenge as not only did I need to juggle school subjects, but this qualification and my Juvenile Arthritis.
During the study there was many practical parts involving intense exercise, but I always managed to complete and pass just in my own little Sarah's Way. If you have a child living with Juvenile Arthritis, you know what I'm talking about.
12 months later I was a qualified health and fitness specialist.
At age 18 years my first job was at a local gym and from there I began my own business. This was a fun and rewarding experience. I met many people with different goals out of life and this was always the best part. People would come to me with all walks of life. I ran many weekly exercise classes, even one in a Pub. Many days were spent in my gym creating personalised programs and making memories with everyone who walked through the door.
Earlier this year it became a little too much running a small business (that wasn't quite small anymore) and a large national organisation. After 6 years in the industry I focused more on Kids Arthritis Australia.
People who have read my other posts would know that each day I exercise with heavy weights, as it's the most effective, natural way to help the Juvenile Arthritis stiffness and pain to cease for the day.
Don't get me wrong some days it's just too much to exercise, but you'll still find me battling on lifting those weights to make the day that little bit easier.
