Pituitary News, Issue 22 - Winter 2002.

In response to our last issue of Pituitary News, when we asked carers to think about their own health and well-being, one carer tells her story and describes the ways she has found to live with her husband's pituitary condition.

K's story

I was first attracted to my husband H by his gentleness. We discovered six years ago the gentleness resulted from a Macroprolactinoma.

In 32 years of marriage, there have been ups and downs. The depression that has been H's companion for at least 25 years is the most wearing feature for him (and me), and more recently his apathy.

I am now off work with stress - work related not due to H! He has been so helpful since he left work five years ago, an expert cook, cleaner, housekeeper and friend. I could not have kept going as long as I did without his support, both practical and emotional.

We have a wonderful, supportive GP. However I was upset when I saw the GP about my health, and was asked about H.

To cut a long story short, I was referred for counselling to a psychiatric nurse who usually worked with families of psychotic patients. I learnt that H's illness was not the centre of the universe and that I had a right to my own life, without feeling guilty. I should try to treat H as normally as possible.

My GP told me I needed a holiday, without H. I describe H as like vintage wine; he does not travel well. (And sometimes needs to be kept in a cellar!)

The first holiday alone was the most worrying. An organised coach tour to the Lake District. It was wonderful. Everyone was so friendly. The coach driver made sure I was OK. I had privacy if I chose or company if I preferred. Since that first solo holiday, I have been to Florence and Pisa.

I can also tell strangers I meet that my husband has a brain tumour and deal with all the sympathy, using the opportunity to show people that when a serious illness is diagnosed life does not stop; it changes.

I also do evening classes and Saturday workshops on things that I enjoy, like pottery and embroidery.

It took time getting used to going away and visiting, for example, the theatre, on my own. But I can do it now without feeling guilty, and without resenting H for not only having to see him suffer with his illness, but lose so much myself. It also recharges my batteries to give me extra energy when I need it.

We are at home all the time now. Both 54, we will have an extra ten years of retirement together, so we have to make it work. We love each other but both realise that we need other people, and other activities, to have all our needs met.

Being a carer is a 24-hour 365 days a year job. We deserve time off. Treat yourself and enjoy your time. You only have one life, it is so important that you feel fulfilled in your life and as your own person, not 'just' a carer.