Denim Blue Ribbons

Having a rare disease, which often goes with two or three other rare diseases, is one hell of a way to live. No one can see it, most of us are told we don’t look sick and most medical practitioners will never see your type of disease in a life-time. The rarer the disease, the less information there is because research money will not be used for a handful of people suffering from one or other rare condition.

And then there are those well-meaning people who don’t think further than their noses who will say, “Oh, but you don’t look sick”. I so often want to tell them to go get themselves a dose of it and then come back and talk to me again. I get frustrated, angry, depressed and feel that I am no longer useful because I can’t do what I used to be able to do. My head gets in the way of me allowing my body to use its own intelligence to heal itself. I want to be in control. I want to tell these germs, bugs and cancer to fuck off. I often feel like a dog that wants to go and hide under the hedge to get away from everyone…somehow to escape the fear and angst I feel. It is very difficult to carve out a new life when your old one is taken away due to illness. And then there are all the aspects that go with a lost career – the financial strain, the strain on relationships and the inevitable loss of friendships. It is only the truly remarkable friend who will stick with you – like all relationships, friendships need constant give and take and when you are chronically ill, very few people will stay the course with you. You are often just too tired or too sick to keep appointments or to put much value into your relationship.

Then there is the spousal/life partner relationship that goes for a ball of shit as well. Instead of being the lover and the home-maker, the spouse becomes the care-giver and there goes your sex life. It is difficult for anyone to move from care-giver to lover and the partner who is ill feels less and less worthy and less and less loved. It takes a very special kind of partner who will not only keep you feeling loved, but will also help you to fly your kite in the sky instead of under the carpet.

It is a fucking awful existence and it is a wonder that so many of us still choose to live, despite the enormous obstacles we face. "Get busy livin', or get busy dyin' ", - Andy Desfrain- Shawshank Redemption. Let us all “Get busy living”.

Stay “busy living”, irrespective of what you are going through. It is a tough choice when you feel like you are busy dying, but it is a choice we can make and our attitude will pull us through one challenge after another.