Recently I went to an Open Day organised by Little Hearts Matter, a charity that supports parents of children with single ventricle conditions like mine. Not long ago I wrote a blog for them ( http://heartlog.tumblr.com/post/155440969720/im-part-of-the-first-generation-with-half-a-heart) and so I was invited to attend.
A couple of weeks before the Open Day several young people from the charity had visited the House of Lords to premiere their film ‘Half a Heart, Half the Energy’. It’s a great short film – You can view it here: https://www.lhm.org.uk/zipper-zone/lifestyle-information/half-heart-half-energy-2/the-spoon-theory/ – and does a good job of explaining how the ‘spoon theory’ can be applied to those living with ‘half a heart’.
I had heard about the spoon theory, first introduced by Christine Miserandino, and had, on occasion, tried to use it to explain my energy levels – the number of spoons I use equating to the amount of energy used, and the amount of energy I had left. However, as is pointed out in the film, having a single ventricle condition means that I start off with less spoons in the first place, and so use them up quicker! No wonder I get tired so quickly sometimes! And sometimes I don’t just feel like I am borrowing spoons from the following day but from several days in advance!
I’m so pleased that the children and young people are advised to pace themselves and rest when they need to. I guess as an adult, with adult responsibilities and children, this isn’t so easy to do. As one of my ACHD Consultants once said to me “Donna, you have always gone at life full tilt – you need to give yourself permission to rest”. But, as any parent will tell you, this isn’t so easy when you have children; in particular when those children also have their own additional needs that have to be attended to. Fortunately my children are now old enough to understand if I need to rest.
I then started to think about the types of activities that I feel tend to use up my ‘spoons’. I suppose, when I was younger, there was a small element of wanting to prove myself: that I could work, that I could have children. Nowadays my energy is mainly spent on trying to ensure that our family has all its needs met. This leads me on to one of the circumstances that, I think, uses up most of my energy, and that is stress and emotions. I know I am not alone in thinking that dealing with all the emotions that go along with having a long term condition can really sap your energy. For us older single ventricles there is the knowledge that we are really in the unknown now as we are part of the first generation to survive to adulthood.
Personally, I find if I have a stressful day, the next day I run on adrenaline from the stress, and by the third day I just want to sleep!
On a more positive note I have found a few mechanisms that help me to replenish and keep up my energy levels:
- Always keep hydrated – I try to carry a bottle of water with me or stop regularly for drinks
- Try to never get too hungry
- If planning a big day out try to rest the day beforehand. Not always possible, but I try to pace myself.
- Take the time to recover afterwards.
- I find to try and control my stress levels I am always thinking ahead, trying to be organised (that doesn’t always happen, but I do try! Lol!)
- Keep within your known limits – I can’t clean more than one room a day, and its best for me to keep within my limits than push myself and not feel well because then I can’t look after my kids.
- Finally find a wonderful man like my husband who is prepared to help out and share all the tasks; I dust, he hoovers – even if it is days later!