Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘sight’

“How Did You Not Notice Your Eye Isn’t Working?”

My body going wrong is something I have become rather used to over the last four years. Each time something starts functioning abnormally I find myself less and less surprised. Over the Christmas period I lost my sight in my right eye, and had some issues with my left one too. After spending the majority of my time at the hospital for three weeks I was eventually prescribed Doxycyline for a Lyme Disease flare up. This treated the issue, and everything returned to normal. I was discharged and told they would keep an open door policy for me. Foolishly I presumed that I would not need this and promptly went back to living life.

On Saturday I visited my local opticians. I had noticed that my glasses were no longer helping with my sight, my right eye had begun to get painful and was not focusing properly. After repeating over and over again the eye exam, and consulting his colleagues, the optician asked me to come back today. This was so he could redo the test and in case a miracle happened and my sight improved over the weekend.

There is something rather unnerving about watching a professional get more concerned with each passing moment. At the end of today’s exam, he turned around and asked me who would see me sooner, Eye Casualty or my neurologist. This instantly had me on edge. In theory Eye Casualty will see me quicker, as my neuro is not due to see me until the 6th June. The poor man and his colleagues could not comprehend how I had managed to not notice the dramatic deterioration in my sight. I laughed in pure exasperation at this comment, trying to explain that my body functioning abnormally was something I was used to, so it had not struck me as something to worry about. So off they sent me with an urgent referral in hand.

Upon getting through to Eye Casualty the nurse asked if I had been seen by the John Radcliffe yet. I had no idea that I was being referred to them so queried it, only to have her respond with well because of your MRI results. Excuse me? I had been informed that my MRI was clear. This took her by surprise. She has decided to wait till five to try and speak to the consultant who saw me over the Christmas holidays.

So now I’m sat by the phone waiting for her to call back as she hopes to squeeze me in tomorrow. I’ve gone from being relaxed about it all to rather nervous.

Simple Lessons

Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up doing the splits! Thankfully the muscle relaxant that my GP put me on has helped and has slightly reduced the frequency and intensity of these spasms.

Earlier this afternoon my whole body decided to spasm, it was slightly painful and was not the most comfortable position to be in, but despite that I managed to laugh through it with my mum. Knowing that the spasm would eventually release was a big comfort and made it more bearable. I have included some pictures of the spasm below, in them you can see that my eyes, neck, arms, stomach and leg are all in spasm.

In today’s culture people often seem to want to focus on what we cannot do rather than celebrate what we are able to do. Even the term Disabled focuses on it. I don’t like being labelled  but if I have to be then I would rather be termed as Differently Able, as I am capable of doing the same things as any body else, it might just take me longer, I may even do it slightly differently but at the end of the day I can still do it!

One of my symptoms causes me to go blind. My eyes go into spasm and my eyeballs roll upwards in their sockets. Being blind on and off has taught me to appreciate the beauty that surrounds me in daily life. I previously took my sight for granted, the day I went blind for the first time terrified me, I was having a big panic that I would not be able to read again. Now when I am able to read I appreciate the ability more than ever before. Control of our bodies and good health is such a precious but fragile gift that people tend to abuse. We need to open our eyes to the world and learn to appreciate what we have. Society needs to understand the gifts that senses such as sight brings us and learn to focus on the positive side of things.

I could easily allow myself to drown in a pool of negativity but by focusing on the little things in life like being able to see, and by pushing myself to achieve what ever I set my mind to, I am able lead a positive life. I have my moments of being down, just like everyone does but I wont ever let having Dystonia beat me.

 

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