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.”

That New Medication Face

I was recently sent an article titled 18 Things People With Autoimmune Diseases Want You to Know out of the 18 things this particular meme stood out for me.
Not only does the Meerkat appear to be on Prednisolone (Arthritis medication that can make you gain weight and become round in the face), but looking as if there's a glimmer of hope for the new medication. 

The face I used to create when my Rheumy informed me that yet another medication was available for trial, was somewhat different as I grew older. 

Much like the Meerkats face, there was some hope, but as I got older it became an annoying problem.

I know what you're thinking.

"but Sarah isn't a new medication a good idea?" 

Well reader, it can be. Sometimes you think.

"This is the one! The one that means I can be pain and side effect free for the rest of my life."

Other times, especially as I became older and could realise more about my condition it became more like.

Sarcasm "Great! A new medication which they know little about that will only help me for a short period of time and leave me with life long side effects."

You can tell how my view on the medical world and how I was treated changed as I became more aware of how it functioned.

Don't get me wrong. Some children just need one trial of medication and it works for life. What I say to those people is Well Done! I would just love to be that child.
Others like myself, are not so lucky. 

It was always a different medication around every 3 to 5 years. Yes this may seem like a long time, but remember I'm only 22 years old. 

The question you have now, is what medication am I currently on?
Well the best medication in Australia is unable to help me, so I've had to take a step back and consume a little tablet each day that's eating my stomach lining, but allows me to walk. Yes, you read that right. These are the kinds of sacrifices a child has to make who live with Arthritis. 

I know that there's children, parents and careers out there who are reading this right now and can understand how this feels, but to people reading this and learning about Juvenile Arthritis. Thank you for taking the time to learn more about this hidden yet common condition as it's people just like you, who will help change the way the world views Arthritis.