Have you ever wondered how you have the energy to do everything during the day? Do you ever feel like you get more tired and out of breath than your friends?

You have half a heart which means your body will struggle to provide you with the amount of energy a person with a full working heart has, this is because your heart can’t pump as much blood around the body to deliver oxygen to your brain, heart, kidneys and liver. This means you will face challenges that others may not. Energy is something you will use throughout the day and it enables you to do all the simple things like brushing your teeth or walking down the stairs. But energy also allows you to do the things you enjoy, so you have to make sure you have enough energy to do all of these things throughout the day. The Spoon Theory is a way for you to make these challenges a little easier.

“I am unable to do certain activities and have less stamina than my friends.  However, I don’t really look like I have a disability”. Charlie (13).

The Spoon Theory was created by Christine Miserandino, who suffers from a disability called Lupus. She decided there needed to be a new way for her to explain her lack of energy to other people. People may be unable to relate to Christine because her disability restricts her more than others but it may be difficult to understand why.  So to do this she found that using spoons to represent energy was the easiest way to get other people to understand.

It is normal for your energy to decrease during the day but it is hard for some people to understand that children with half a heart use up a lot more energy when doing the same day to day activity. Therefore people who have a condition, like single ventricle heart disease, do not have the luxury of deciding what activities they would like to do as they have to be aware of how many spoons of energy they have left. The Spoon Theory can create a way for you to think about their day and how best to use their energy as trying to adapt their lifestyle can be one of the many challenges you face.

  So if you have half a heart, how do you use the Spoon Theory?

Some of our youth members adapted it to explain their heart condition. One of the youth members explains, “A normally person starts their day with 20 spoons of energy, just what they need for the day ahead. Throughout the day everybody loses spoons, as they do activities like walking to school, and gains spoons, for example when they take a rest or eat.  However, people with heart conditions, like me, start each day with 10 spoons.” Lucy (13).


These are the spoons of energy that you can use throughout your day.

From these 10 spoons of energy you will need to think about what activities you would like to do and how many spoons of energy it will take up. Here is a picture with a rough guide on how many spoons it may take to do every day activities.

What will you choose to do with your 10 spoons of energy?

Click to download energy poster

One of our youth members, Dom (13), created a graph to demonstrate his spoons of energy throughout the day. This is one way you can plan your day to make sure you have enough energy to last for all your activities.


Sometimes you may find you run very low in energy so Lucy (13) explains what she does when this happens; “Sometimes it is difficult for me to complete all the tasks I need to during the day, so I have to take extra rest (my school has a pupil support centre where I go for time to rest)”.

However to try and prevent this, eating a healthy, balanced meal can also help replenish some energy. Therefore making sure you have a good breakfast ad eat in regular intervals throughout the day is very important. But this may still not be enough for you to complete all the activities you would like during the day so using the spoons of energy to plan your day will ensure you can save some energy to do the things you want to do the most.

This Spoon Theory isn’t just for people with half a heart to plan their day, but it is also used to explain to others about the difference in people’s energy levels. So if you don’t feel like your teacher understands why you are out of breath, or that you can’t concentrate, you can use the spoons to demonstrate what spoons you have already used.

Towards the end of the day you may feel like you have no spoons of energy left, if this is the case your body may borrow some of your spoons of energy from the next day; however this means you will start the next day with fewer spoons. Therefore planning your activities in advance enables you to save enough energy for the day.

Each day will be bring up different challenges and sometimes you will have more energy than the day before but this tool can make sure you, your parents and teachers have a better understanding of your energy levels and why you may get more tired than others.



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    A few weeks ago, we shared a news article about John and Kate Carlton who have been fundraising for Little Hearts Matter. This family’s amazing support doesn’t stop there, as their 9 year old daughter May also arranged for her school to take part in a non-uniform day for Little Hearts Matter. She put together a PowerPoint presentation and spoke to her Headteacher who agreed to hold a fundraising day for LHM.

    Just look at how many donations were received on the day – well done May, you’re a star! ❤️ To get involved and register your fundraising, click here: www.lhm.org.uk/get-involved/fundraising/register-your-fundraising/
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    Youth Support

    There are young people living with half a heart across the country, many aged between 11 and 18. It is massively important for all of these brave young people to have access to the care, guidance and support they need – allowing them to live life to its full potential that their heart will allow.

    Lexie runs our Youth Services, supporting our youth members in a variety of ways, throughout their half a heart journey. These young members are invited to Activity Weekends and Education Days where they will explore their heart condition and seek solutions to the challenges that having half a heart brings. They will also have an opportunity to meet with other young members, online and in person, making friendships and helping them feel less alone.

    Did you know our youth members also consist of siblings? We know it can be a tough road for them too, so they also have a chance to chat with each other for support from people their age that truly understand. You can find out more about our Youth Services by clicking here www.lhm.org.uk/youth-zone/
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