Spoon theory, MS and managing my energy levels

I always try and set some resolutions and yearly goals for myself before heading into the new year. But I also try to not be too hard on myself if they don’t go to plan. And I guess that’s because living with MS is so unpredictable.

So, this year I’m going to try and be more flexible with my resolutions and goals. Let me explain why…

Thinking of units of energy as spoons

Living with MS means I never really know how I’m going to feel when I wake up. I never know how much energy I’ll have or how much I’m able to do that day.

A way of understanding this is the ‘spoon theory’. The spoon theory is a metaphor created by Christine Miserandino to help people explain how it feels to live with a chronic condition like MS. Simply put – spoons equal units of energy.

The idea is that people living with health conditions like MS start each day with a limited amount of spoons. These vary from person to person and from day to day.

So let’s say I wake up and I have 12 spoons. And what I’d like to do during my day is: 

• get up 
• make my bed 
• shower 
• brush my teeth 
• get ready 
• eat breakfast 
• go outside 
• exercise 
• work 
• socialise 
• make dinner 
• clean up 
• get ready for bed 

Each activity will use a different amount of spoons.

A smaller task like making my bed may only use 1 spoon. Whereas showering may use 3 and exercising may use 5. When you start to add it all up, 12 spoons isn’t very much. And some days I’ll wake up with even less.

This means, every detail of every day needs to be considered, and that’s hard.

Read about managing fatigue

A cycle of overdoing it

I’ll also often need to do more than my daily spoons allow me to. If this happens I can opt to ‘borrow’ spoons from the next day’s allowance. But that will mean I’ll start the next day in a deficit.

I’ve always been the type of person to push myself to the very max. To set myself crazy goals, and to keep myself busy with lots of different projects.

I hate having to say no, to cancel, to let people down. And the guilt associated with this is a heavy burden to bear. So it's very easy to get stuck in a cycle of overdoing it and exhausting myself by not managing my spoons well enough.

Finding a balance

But, I’ve been living with MS for 5 years now and I’m learning - slowly but surely.

There’s been times where I’ve had to force myself to take a step back, cut down my hours at work, and put all the things I wanted to do on hold. And guess what? It was the right thing to do. I now feel healthier physically and happier mentally and I’m ready to start 2024 in the right way.

I won’t be setting any unrealistic resolutions or goals, instead I’ll be making ones which are small but meaningful and hopeful but realistic.

So this year my top tips are be careful with your spoons and be kind to yourself. And focus on simple changes that can make it easier to manage your condition and improve your quality of life.

Getting support

I think equally, no one 'gets' MS like people who have MS. And so another top tip from me for next year is to find your support network. When I was diagnosed with MS all I wanted to do was to meet people like me. People going through similar things. People at similar points in their MS journey. And people still trying to get on with their lives as much as possible.

Back in 2019, I decided to set up a support group specifically aimed at facilitating peer support for young people living with MS. This has now developed into a charity called MS Together which exists to provide services of advice and support to people affected by MS, with a particular focus on those living with MS aged 18-35. We now support thousands of people, organise virtual events and in-person meet ups across the UK. Next year we’ll be launching our 1-to-1 support service.

You can find out more by visiting our website www.mstogether.org or by following us on Instagram and Facebook @mstogetherofficial