Juvenile Arthritis Life Hacks

I will never let my chronic illnesses stop me from living my life.

I'll always attend celebrations or meetings no matter how much pain I'm in or fatigued I am. 

Since founding Kids Arthritis I've received many messages full of questions from children, their families and carers who finally have somewhere and someone to turn to for support. 

Many of these questions have been in relation to my experiences living with Juvenile Arthritis among other chronic illnesses. 

This month I've created my list of Juvenile Arthritis Life Hacks.

Medication and health conditions list.
This is helpful for many reasons. If you're in an accident and medical help needs to know these quickly, hospital treatment stays or if you require care from someone at your home who needs to be aware of this. Keeping it on the fridge, car, bag or anywhere in easy reach is a essential I believe when living with a chronic illness.

Office Chair as a Wheelchair

You'll never think of it the same.

Lists, Lists, Lists

The thing with this though is that it has too be done the night before as the next morning your body could be riddled with pain and stiff joints that just don't want to move. Having a plan of action for the next day is always a positive thing to stay motivated and focused.

Finally, Asking for help.
I've placed it last as it's the one I want you to remember the most. Asking for help doesn't make you any less capable of that job or task. We all need a little help from time to time in our lives. Whether it's washing the dishes, catching a bus to work or simply needing a listening ear. We all need to help ourselves, but help others when they need it too. 

Alone and Full of Pain

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.

Driving with Uveitis

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.

Joint Swelling and Juvenile Arthritis

People who don't have Juvenile Arthritis find it hard to understand what it is actually like having swollen joints. 

I am not only talking about the actually joint but what it does to my body.

To put it simply, it screws everything up.

Living with a hidden disease is hard as I've said many times before but what makes it harder is that you are trying hard and volunteering my life to supporting children living with Arthritis and my joints just keep getting in the way.

This is my third month of elbow swelling and this isn't unusual at all. What is unusual is that it's only happening in one joint. This is not normal but I'm very happy that this is the case currently.

When a joint in mu body swells up it first creates stiffness. Due to this stiffness that I have in my elbow currently I am unable to brush by hair or even wash my hair without funny head movements that lucky I'm the only one that can see. 

 With that stiffness becomes horrible pain. This pain isn't the sort of pain that you get with a paper cut or a broken bone, it's the sort of pain that NEVER LEAVES YOU ALONE!

It's always there and even with pain killers it still just doesn't leave!

If these two things stick around long enough along come the tiredness. My body at this stage is usually fighting against itself even more and getting really confused and my body just has enough and wants me to sleep ALL THE TIME.

With this tiredness like normal tiredness, you become "cranky" but what happens to me when that happens?

LUPUS! Yes the wonder other autoimmune disease that I have. 

Lupus kicks in and that is when it's very hard to control. (Read my other blog to learn more about my Lupus)

When I was a young child and living with swollen joints for most of the year I didn't suffer with Lupus as well. This is why being 22 years old and getting a swollen joint is worse, but I will always keep smiling and supporting children living with Arthritis.

Until next time,

Keep smiling as you never know whos day you'll brighten.