A new day

Thank you for the many supportive e-mails yesterday which were very much appreciated. If you are a regular reader of my blog, you will by now realise that I write honestly, the good and the bad. There would be little point in me cheerfully writing only good things, when so many of you out there, who are fellow sufferers or caregivers know for a fact that no matter how positive an attitude one has, there are naturally going to be down moments. After a good night's sleep, I have awoken to a 'good day'. Any Parkinson's patient will be able to relate to having 'good' and 'bad' days. Then there are 'on' and 'off' times when the medications are working and then suddenly cease to work. On a 'bad day' it takes every ounce of energy to even speak to someone. Yet on a 'good day', you'll have trouble getting a word in edgeways, and my husband and those who know me will agree, it's sometimes difficult to get me to shut up! It's hard to change the habits of a lifetime, and as a young school child, I remember the teacher rapping my knuckles with a wooden ruler for talking in class. Long gone are those days, for today if a teacher were to reprimand a child in such a physical way, they would probably be charged with 'abuse'. Having Gaucher disease, one bruises very easily, so you can imagine how this chatter box, as a child, was always covered in bruises, and yet it never occurred to the teachers or anyone that maybe using a wooden ruler to reprimand me might not be such a good idea! So little was known back then about Gaucher, it's a wonder I survived childhood at all. On one occasion, late at night, feeling extremely unwell, my mother called the doctor to the house. The doctor was quite irritated at making a house call so late, but as soon as he walked into our house, the unmistakable metallic smell of blood that emanated from my bedroom, made him change his mood immediately. I was about ten years old and haemorrhaging internally (due to the Gaucher); he apologized to my mother for being so off-hand on the phone, and called for an ambulance straight-away. Strapped down on the stretcher in the ambulance, lights flashing and sirens blaring, we made our way to Great Ormond Street Hospital in the centre of London. I was so exhausted by then, that I fell asleep. Laying motionless, and having an extremely pale complexion, when the poor young medic in the ambulance glanced at me, he thought I had died. I am clearly one determined stubborn patient - for I'm nonetheless here, and have no intention of going anywhere for quite some time, and still have much to do. Take a look at my latest article on The Huffington Post entitled 'Inspiration'.