I am typing this article in bed, on my laptop which has been precariously propped up, barely able to see the keys, I am determined to finish this piece. You may be wondering what on earth I've been up to. Sorry to disappoint you, but it doesn't take much to injure myself, and I wish I had an exciting fascinating tale to relate, but the truth of the matter is sadly quite pathetic.
I was born with Gaucher Type 1, which is the most common form of this genetic lysosomal storage disease, but there are in fact three types. You may not know or have heard about Type 2 and Type 3 which are rarer still. As the aim of the International Gaucher Day is to raise awareness, I would like to bring attention to Types 2 and 3 Gaucher disease, that are often overlooked.
I will admit many things, one of which is my inability to follow a map, and poor sense of direction. Well, if I were being totally honest, I'd confess, I have no sense of direction whatsoever. My husband will quite happily back me up on this point for I have demonstrated on many occasion, much to my shame and his amusement, getting lost even in familiar surroundings.
I would like to dedicate this article to a good friend who is battling Parkinson's and will hopefully be undergoing surgery soon. May you have a speedy recovery, resulting in an improved quality of life. This article is for you - one of the many unknown heroes, whose private story goes unsung but who inspires me with your bravery, insightful words of wisdom, a great sense of humour and wit.
I've been asked on occasion "How do you get Parkinson's?" Believe me, I wish I knew the answer to that million dollar question. I'm sure I wasn't the only child who was told "never sit on a public toilet seat" for fear of catching something nasty, the advice of which I took most earnestly when young.
Before Internet, e-mails, mobile phones, the technology we enjoy today, and now take for granted, it was far harder to find the latest information, meet with others in the same situation and impossible to correspond with fellow sufferers half way round the world. If there was a support group located near to one's home, then it was a stroke of luck.
My worst nightmare is becoming a burden to my family, which I'm sure is in the back of many people's minds. No one wants to put loved ones through such difficulties and heartbreak. Why is it the people we love the most seem to be the ones who end up suffering? I am painfully aware my family, despite their smiles and good humour, encounter strains and difficulties due to my ill health.
When people ask me "How are you?" I have to think twice, not because I don't know, but often am not sure what they want to hear. Some ask out of common courtesy, simply being polite, but would rather I answer "I'm fine thank you" than hear a long account; perish the thought of hearing the truth and understanding the full picture of living with chronic disease.
Every morning as I clean my teeth, and the strange reflection of someone I once knew stares back at me with an expressionless face, I wish I had a magic mirror that would show me what I'd like to see. Unfortunately the mirror does not lie, as I look at myself I can hardly believe it's me. Our bathroom scales annoyingly also tell me the truth...