In February 2008 I stopped work and study to care for my hubby who has a condition called Autoimmune Polyendocrinopathy Candidiasis Ectodermal Dystrophy (APECED – otherwise known as APS1).  APECED is a very rare genetic condition affecting the functioning of the Autoimmune Regulator gene, resulting in a number of autoimmune conditions.

Grumpy started off with one condition when he was 18 months and he now has 12 different conditions.  Because of the combination of conditions he has it is very hard to gain control of his health.  He can get sick very quickly and when that happens he needs emergency injections and immediate help from me.  I used to struggle to take time for myself because I would stress about what would/could happen when I wasn’t there and I would also feel guilty about leaving Grumpy at home.

Then I went to an art therapy class for carers.

The course went for a few weeks and all of the carers had trouble accepting that it was ok for us to take this time out for ourselves.  One week we discussed the guilt that we felt and the fact that we all had a ‘guilt monster’ who followed us when we were out to make us feel guilt.  We then sat down and made our guilt monster.  This is what mine turned out to be.

As you can see he has lots of eyes so he can see me wherever I go.  He also has lots of arms and legs to be able to catch me.

When I got home I hung him on the wall.  From then on when I went out I told myself that my guilt monster was stuck at home on the wall and I ceased to feel guilty when I was out by myself.  It was a simple mind trick but it worked!  I am now a carer for my daughter as well as hubby and I know it’s ok for me to take time for myself.

As a carer, it is very important to take time out to look after yourself.  It isn’t always easy, but it IS always important.  It’s like they say on an airplane – fit your own oxygen mask before you help your kids with theirs.  If you don’t look after yourself you will most likely get run down and be unable to look after the people you care for.

In Australia, if you need information, support in your caring role or simply someone to talk to, you can contact the Carer association in your state:

Carers ACT
Carers NT
Carers NSW
Carers QLD
Carers SA
Carers TAS
Carers Victoria
Carers WA

 There are similar organisations in a lot of areas so if you are looking for one in another county just search for ‘carer association’ or ‘carer support’.

I hope that you all find a way to escape your guilt monster and take a chance to look after yourself.