Monday, May 29, 2006

I'm going to re-invent myself!

The one question that I keep being asked is am I better now?

Good question, but to be perfectly honest with you. I’m not sure, it’s a year and some months since this all began and I am still on the settee watching brain numbing TV (Did you know that there really is a small number of TV programs that are simply regurgitated over and over again, I know because I’ve probably seen them all at least twice).

But I must be better mustn’t I? After all I’ve had lots of drugs pumped through my body; I’ve subjected it to ghastly chemo sessions and been withdrawn from the outside world.

Surely it has to have been worth it!

Well the jury is still out on that one because some days it really doesn’t look so good, but I’ve found a solution. I’ve decided that the best way to handle it is to limit my use of the word better and have chosen to use the word ‘different’ instead, because things really are different.

My legs (the site of the original problem) maybe painful, swollen and rely on crutches to help them move around; mr lupus may still knock on my door daily (some days more forcefully than others) but it’s definitely a different world that I am now living in.

A friend of mine was recently asked how her friend Carole was doing. She knows more than one Carole so she innocently asked which one. Was it Social Worker Carole? Carole from East London? or Lupus Carole? It was then that I realised that I had suddenly become someone else. I was no longer fun loving Carole or professional Carole or even just Carole now I was firmly attached to mr lupus. We are seamlessly joined at the hip and that was how people were now seeing me.

But that’s not how I want to be seen.

So now I am going to reinvent myself, if Madonna can do it (several times) I don’t see any reason why I can’t do it. So armed with the notion that life is in the detail and that little things really do count, I’ve already started my re-invention process by:
Changing the way my Blog looks (I hope you noticed)
No longer sleeping on the settee
Giving myself a manicure
Removing the offending clothes from my wardrobe
Hanging pictures
Giving myself permission to be
Letting go of stuff (still a work in progress)
Inspiring others (I’m doing really well at this one)

That may not seem like much, but believe me in my world it is quite revolutionary. All I need now is some sunshine. Can anyone tell me where the summer is because I’ve looked at my watch and it is well overdue.

Thought for the day
Life is about perspective and you get to chose the perspective!

Wednesday, May 10, 2006

World Lupus Day

Today all over the world individuals, their families and friends are focusing just a little more on the auto immune disease lupus so I would like to ask you a favour. I know that you have a busy lifestyle so I promise not take up too much of your time.

For those of you who don’t know lupus is a condition whereby the body's immune system goes into overdrive and starts to attack itself. The symptoms are many and varied and the illness seems to mimic other diseases. This gives rise to difficulty in diagnosis and the condition can be overlooked, sometimes for years, unless the GP or consultant is alert to lupus.

As someone living with this condition, it is just as hard to deal with and to understand but I am not asking you for sympathy. I am simply asking that you spare a thought for me and others like me who are challenged on a daily basis by this condition and associated complications.

I can send you an email of a man walking the world for lupus that you can share with your family, friends and colleagues. If you are interested please send me an email with walking in the subject line.

Thank you your support is much appreciated.