The DNA lottery has dealt me the booby prize of receiving two diseases, but ill health doesn't stop me living life to the best of my ability. "The show must go on", as they would say in the theatre.
Women are used to bearing it all, talking candidly and honestly on every topic you could possibly think of. In a safe environment, we are willing and able to share our deepest thoughts and bear our soul without fear of judgement or incrimination.
I wear a smile as my shield, maintain a sense of humour for a coat of armour, and a strong fighting spirit is my sword. This is how I battle each day with two diseases; one rare and one extremely common. My life is no picnic, but one thing for sure, it's not dull!
As adults we often view loneliness as a sign of failure, and a successful person is surrounded by a multitude of friends. In reality, this is not the case, for generally one has only a small handful of what can be considered loyal good friends, the others are merely acquaintances.
Different countries around the world with diverse health schemes, adhere to set rules and regulations. Learning how the system works where you live, and finding out what you're entitled to, are just the first steps, in what feels like a voyage into uncharted waters.
Living with a long term illness can be awfully hard sometimes, and we all need a good laugh now and then. Comedy takes your mind off a bad situation, even if just for a short time, which one could say is the true form of "comic relief".
The night before surgery is always strange, sleeping in a hospital bed waiting to get tomorrow over and done with, so the recovery process can begin. Thoughts of home and getting back to some form of normality fill my sleepy head.
Entering the winter months, night closes in early, as darkness envelops us with a chill in the air. There is nothing more welcoming than arriving home, greeted by the wonderful aroma of a steaming pot of soup on the stove.
Generally people don't want to hang around anyone chronically ill, and I can't say I blame them. I do understand, for someone in a poor state of health has limitations when it comes to socializing, which admittedly causes difficulty in maintaining friendships. Once diagnosed with a degenerative disease, life is never quite the same again.
Hearing how doctors fly around the world attending and giving lectures at various conferences may sound glamorous, but having just spoken at such a gathering in Barcelona, giving a short talk from the patient's perspective, I can assure you, this is far from the case.