Saturday 23 October 2010

But not a wasted life...

I absolutely hate doing the health updates. Most people like me spend their lives trying to convince everyone there's nothing wrong. I'm doing them to share with the world what a chronic illness is really like and how it affects us.

Whenever I see my aunt, she always says "Well, you look well." I reply "Clarins and willpower" which she thinks is hysterical. I am a victim of my own success and stubborn pride.

At times, people have asked my husband why he stays. I'm often too unwell to look after the house or the kids, often too unwell to have sex or go out for the evening. I might be irritable from the pain, distant from the drugs, exhausted from the constant effort or defeated by hopelessness.

He always tells them "Because when she lives, she really lives."

At 13 I set up a music school at home, teaching children to play keyboards. By 18 I had 14 students and we won every category of the county music festival.

At 15 I started playing keyboards and singing in local pubs or clubs to earn some money.

At 16 I was diagnosed with Crohn's, though I'd had symptoms since I was 10.

At 18 my college told me they wouldn't predict the 'A' Level results I needed to go to university, as I'd missed so much time off sick. I begged and pleaded and guaranteed I'd get the grades, and then I made sure I did.

Doctors told me not to go away to university, I was just too sick. I went anyway.

I applied to spend the third term of my second year in Italy. The doctors said I was mad, but I still went. The programme was under-subscribed, shunned by the healthy, fearful, students

In 2000, my husband and I bought a motorbike in New Orleans and rode it coast to coast all the way to LA. It was 3,900 miles across 10 states and 4 time zones. I was sick all the way, but we made it.

In 2003, we packed up our lives and moved to Italy. The Mediterranean diet and lifestyle had always made me feel a little better. I couldn't live there as I had too many commitments at home with doctors and hospitals, but we rented an old farmhouse and my husband set up a business running motorcycle touring holidays. I split my time between Italy and the UK.  When I was in Italy, I occasionally catered for the huge villas that dotted the mountaintops.

They said I'd never have children. I ignored them and had two.

I don't know what the next adventure will be, but I've always said I'd rather go out with a bang than a whimper. I think I've done more with my life than most healthy people. Don't get me wrong, at times it's nearly killed me, but what's the point of sitting around, dying a little bit every day? Healthy people can do that. I need to grab every opportunity.


  1. Sue, an amazing story, as you say, by any standard. My son has cerebral palsy and has trecked in Nepal, with able bodied mates, lived in Japan, and won trophies in able-bodied five-a-side football, you are all inspirational, you may not understand my attitude towards the whingers and scroungers, but I think you shame them all, they are a disgrace. The only thing missing from your CV is a Tory party membership card....I don't understand why you keep bad company. :-) :-)

  2. Ken - I think I do understand how you feel about whingers and scroungers. The thing is, you might have thought I was one if you'd met me and I hadn't written this blog ;)

    Thanks for the lovely comments anyway.

  3. Sue....You don't have the classic characteristics of the, whinger/scrounger, so I wouldn't identify you as one, √Čoin, on the other hand, appears to be a youngish male with time on his hands, always off to the library to read the papers, no doubt scrounging a cuppa' while scanning the ground for a stogie....mmmmm ! :-) :-)

  4. thank you... very inspiring!!