Monthly Archives: January 2014


Tomorrow  (27th January 2014) marks three years since Steve went to sleep and didn’t wake up.

I still miss him terribly! In saying that… regular readers will know he still seems to be very active in my life and helps with driving decisions and making me stop and think about what really matters. Without going into details, I have decided to leave the temping job I am at. It had been on my mind to speak to my manager about my concerns but, as ever, Steve engineered it so that something happened on Friday which made it quite clear things were going to get even more unreasonably busy.

Having been a carer, and having already had my career focussed life before being a carer, I’m too long in the tooth now to have the proverbial taken out of me for the sake of a few pounds. To be able to say that, and to be able to terminate my assignment, I have to be eternally grateful to Steve for being such a thoughtful and wonderful money manager. I am certainly not rich by any means, but I have the luxury of being able to say I could work at a food bank more than need to feed myself by it.

Talking of the vulnerable in society…

The e-petition closed a few days ago and we achieved 3,998 signatures. I knew all along we would never get the 100,000 signatures but I had hoped for 10,000. Am I disappointed? Not really. It was a good number for such a so called ‘rare’ disease. Had I been 2 off 100,000 THEN I would have been disappointed at getting so close yet so far.


I have been amazed at the feedback and support from people. Some have made contact where they too have been affected by having HD in theirs, or others’ lives. As an awareness tool, I hope I have played a part to help in however a small measure.

To close this particular blog post, a new poem and a photo of me and Steve on our wedding day.


Whenever I feel down and sad

Whenever there’s frustration

I take a moment to look up

At you, my inspiration.


The pictures hanging on the wall

The frame at my workstation

I take a moment to look up

At you, my inspiration.


I wake up in the morning tired

A lack of motivation

I think of how you woke each day

Your strength, my inspiration.


I force another slice of toast

Remember your starvation

And think of those who could not eat

Like you, my inspiration.


I scold myself for vanity

A wrinkle my fixation

Then realise you love me still

Your smile, my inspiration.


I curse the day we heard your test

Confirmed your gene mutation

Then think of how you coped so well

My bravest inspiration.


I think of how you never lost

That skill… communication

The words and thoughts come loud and clear

From you, my inspiration.


Your death so young and so unfair

Became your liberation

And yet you chose to stay with me

To be my inspiration.