Life with One Eye

At the beginning of 2017 I wrote a post sharing, ‘The Day I Lost My Sight’. I thank those for their questions and words of support, but there was one question asked by many readers: 

“What’s it like living with vision in one eye?”

This is a common question I get asked, as it’s a problem that many may never have to experience.

In the beginning simple daily activities; reaching for a glass of water or shaking someone’s hand were a huge problem. This was due to the depth of field issue. My brain had to re wire itself in how it saw the world and how far away objects were. 

Time went by when driving at night become an issue. I hear from older adults that they give up driving due to feeling unsafe on the road or those car headlights are too bright. I was 20 years old and had to give this up, something I’d worked hard to gain that gave me independence, but had to give up due to something I had no control over, Juvenile Arthritis.

Another impact was that the world I see is darker than others as there’s only light entering one eye, rather than two. This means when in rooms with dimmed lighting it’s disorientating and I can become light headed and everything that’s part of that feeling.

By far the biggest impact has been the risk of the condition that caused this in the first place, Uveitis affecting my left eye. If and when this happens, no one knows and what effect it will have on my life we will see at the time. But I never let any of this hold me back from achieving my life mission: “To change the way the world views Arthritis.”

Flowers for Charity

We all know a person that loves their garden, they may even be you, but my mother loves her garden for a special reason.

As a child I remember each year she’d take up more and more room in our backyard to grow more flowers which for 21 years she has grown, bunched and sold on the Echunga Main Street for Juvenile Arthritis. She does this between ANZAC and Mother’s Day. During this there are many community members who come together and show their support not only for the work my mother is doing, but for the 1 in 1000 Children in Australia living with Juvenile Arthritis.

I remember one year spending part of this time in hospital for Juvenile Arthritis related surgeries, but it didn’t stop the community passion to help support Children living with Arthritis. While my mother spent time in hospital with me, the volunteers were at our home creating bunches of flowers, as they knew that I wasn’t the only one living like this and by them helping more people would learn about the condition.

Another story is about the many times throughout the years when it would rain just before Mother’s Day. Now my mother spends all year cutting, watering and pouring a whole heap of love into these flowers and when the week before Mother’s Day the rain comes and ruins her work, it’s a hard thing to watch.

I need to mention these aren’t any flowers, they’re the special Mother’s Day flower; Chrysanthemums. Their unique smell and bright colours they’re the perfect flower to give a special lady or person. If you need a reason to grab someone a gift or add some colour to your home, head through Echunga between ANZAC and Mother’s Day to show your support for the 1 in 1000 Children in Australia living with Juvenile Arthritis.

My Favourites

This months blog has been inspired by one of our KAWarriors who asked me a very important question at our last Support Group.

"What are two of your favourite sweet foods to cook?"

They then went on to tell me about their favourite ones which consisted of chocolate chip muffins and fruit salad stick. 

I had to stop and think for a moment about the answer as I love cooking many different foods. If you're a friend of mine you'll know I love surprising them with muffins or slice. To either say thank you or just put a smile on their face. 

I get my love of cooking from my father. I remember being a child and waking up to the smell of pancakes on the weekend and trying to guess what flavour they might be. Banana was and still is my favourite covered in ice cream and fresh fruit. They would be in different shapes and letters, but always made with love. 

Now that I'm older I still love my dad's pancakes, but enjoy making them for him on the weekends. Covered in maple syrup with juicy fresh fruit! 

My other favourite sweet treat to create is no other than my Grandma Oinn's banana cupcakes (are you seeing a pattern here?)

They are so easy and sometimes I even had a hint of chocolate chip or sultanas in there to mix it up. 

Both are incredibly easy to create and so delicious that you can't help, but share with others around you!

Eating a healthy diet is so important to everyone, but when you live with Juvenile Arthritis it's even more important. The statement: you are what you eat, is incredibly true and should be remembered on a daily basis when making food choices.

If you would like any of my two favourite recipes, please let me know as I'd love to share them with you!

20 Something Living with Arthritis.

When you were in your 20's what adventures did you get up to?

I'm sure some of them you'll share with your children, and there's others which you won't.

My adventures living in my 20's will be shared with them and are being shared with you right now through this blog. 

I googled Things to do in your 20's and realised that many of them are just too hard to accomplish when you live with Arthritis. 

The number one activity they suggest is travel.

As a kid I spend every school holiday at our family beach house and every winter one somewhere warmer in Australia, but never overseas. I've never been in a commercial plane or even overseas. 

Why is this?

When you live with an autoimmune disease you can be restricted by your medications. Live Vaccines are normally a NO GO ZONE, while the thought of having to stop taking my medication for around 8 months just to have a vaccine to travel overseas, to me doesn't seem worth it.

Of course some day I wish to travel, but for now I'm very happy changing lives through Kids Arthritis Australia.

The next thing on those lists is usually, Live on your Own.

How? How? How? Is a 20 something living with a crippling auto immune disease supposed to do that? This one is pretty self explanatory if you've read my other posts.

Reading all these I've created my own list of things for 20 somethings living with Juvenile Arthritis.

1. Listen to your body.

If it's feeling weak and you're feeling fatigued. Stop. It can be hard, but make time for yourself. Whether it's reading a book or enjoying a cuppa, make time for yourself.

2. Be honest to your doctors.

Yes, that's right. If you really did have a flare on the weekend or skip your medication last Wednesday. Tell them. Your honesty really matters when it comes to your health and well being.

3. Eat Healthy, but make sure you spoil yourself.

This advice comes from my Personal Training Business days. Our bodies always need good nutrition, but sometimes due to our medication we may crave salty fries or ice cream (this was my problem after infusions). Give yourself those foods, but only in moderation. 

4. You come First.

You always come first when living with Juvenile Arthritis, as self centered as that sounds it's true. If you're not feeling up to going shopping with your friend, tell them. If you're just to tired to attend a celebration at night, tell them. If you don't, they won't understand about your pain and Arthritis.

5. Create a support network around you.

Not everyone in their 20's living with JIA want to share their journey with everyone like myself, but it's important to find people to share it with. These people could be your mother, sister, support worker from an organisation (like myself), coworker, local minister, the list is endless. Just find a group of people you trust, because there's always people who care about you.

What's your advice for 20 somethings living with Juvenile Arthritis?

Share it on my Facebook.