Cancelled Plans & Spoon Calculations
Last night, I asked a friend if she wanted to meet up for lunch and she said yes. About an hour later, I went to book a table and my whole body began to hurt. The thought of getting the children up and ready, packing day bags and travelling made my head ache. I really wanted to see her. I’d asked her in the first place! But I messaged and cancelled.
(It felt pretty crap.)
This is a major part of my life: the balancing act of tasks vs. energy.
I’ve mentioned before that I have an invisible disability, one you might not have heard of. It’s called Ehlers-Danlos Syndrome (EDS).
From Google: “Ehlers-Danlos syndromes (EDS) are a group of inherited connective tissue disorders that can affect various parts of the body, including the skin, joints, and blood vessels. Individuals may experience a range of other symptoms, such as chronic pain, fatigue, digestive issues, and cardiovascular problems.”
There’s no cure. But about ten years ago, I was sent on a pain management course, and it was honestly life-changing. I met other people who were living with similar things and for the first time, I felt seen and validated. There was even a family day where I gave a little speech about how it affects my life. My dad still talks about it.
The biggest takeaway from the course was the idea of pacing.
Spoon Theory: Life in Energy Tokens
Let’s say I get 10 spoons on an average school day:
There’s a theory used a lot with chronic illness called spoon theory, you only have so many “spoons” in a day and you have to choose how to spend them.
- 1 spoon = get up and dressed
- 1 spoon = make breakfast
- 1 spoon = get the kids ready and go to work
- 4 spoons = actually do the work
- 1 spoon = pick up the kids
- 1 spoon = make dinner
- 1 spoon = bedtime
Boom – all gone.
No spoons left for socialising, exercise, fun or rest.
Before kids, I’d have leftovers. I could go to work and go to the pub. Go swimming, take a street dance class (Yep that was a thing and I added a photo to prove it). Sleep all weekend. Spoons were easier to refill.
Now? Well, kids are famously known for their ability to suck spoons out of you at high speed.
When my spoons run too low, my body starts shutting down. I can’t move properly. My eyes won’t stay open. If it gets really bad, I can’t speak or function at all. So pacing isn’t just about comfort – it’s about survival.
There are things I can’t change: my kids, my job, the realities of life. So socialising often gets the cut. It used to make me feel sad and angry, but now I’m learning to be grateful for what my body can do.
Since having River, my life has become more unpredictable. I don’t know how many spoons I’ll need during the day. So pacing becomes something I have to think about daily.
And I’m so lucky to have Kike. When we met, he had no idea he was signing up for all of this but he gets it. He steps in. He sends me to bed when he sees I’ve run out of spoons.
Why Am I Writing All This?
Well… why am I writing at all?
Because it’s cathartic.
It’s healing.
It helps me process what’s going on in my life and reflect on it with a bit more softness.
Living with an invisible illness has made me a stronger advocate for River to remind people not to assume anything about him before truly knowing him.
It’s also made me more intentional about teaching both of my children that it’s okay to ask for help, something I’m still very much learning to do myself.
When I messaged my friend to cancel lunch, she replied with:
“No worries, let me know a day next week and I’ll come over early and watch River so you can have a rest.”
And that’s why she’s one of my best friends. No guilt. Just kindness.
Sunday: Spoons Low but Still Swimming
Which brings us to today: Sunday morning. Spoons low. But still, 9am swimming lesson for Summer! So off we went, leaving Kike with River and the Halloween iPad tunes already blasting.
I was too tired to cook so we wandered down to a local pub, they know us well and they will kindly make my roast dinner.
A Pub That Gets Us
We went to our pub, the one that knows us. The one that doesn’t mind if River walks around touching everything, including the dog. And dare I say it… we had a lovely afternoon. Summer found some girls her age to play with and River was more than happy sitting under his disco light with his iPad and some dominoes with the dog nearby.
River loves dogs. I read an article once that said dogs are great for neurodivergent children. I completely agree. I’d love to get one… I just can’t keep another thing alive at the moment.
I looked into guinea pigs (I had them growing up) but Kike, ever the voice of reason, gently reminded me that even guinea pigs would probably tip us over the edge right now. He’s not wrong.
Ending the Weekend Right
So, a relaxed Sunday. Just what we needed.
We even managed to catch the England girls win! I’m not into football. I don’t support a team but it’s always fun to watch penalties and especially important for Summer to see women smashing it on a national stage.
Reflecting on Balance
Some days are a mix of Calpol doses, loud YouTube voices and cancelled plans. Other days feel like a win just because no one screamed at the pub for half an hour. That’s the balance I’m learning to live with the constant weighing up of what I want to do, what I need to do and what I actually can do.
Living with EDS means my energy has to be rationed, even when the world around me demands more than I’ve got. Add in two kids, one with complex needs, a job, a relationship and the never-ending mental load and that “spoon theory” suddenly becomes very real.
The hardest part is that the things I drop first are often the ones that fill me back up, time with friends, conversations that don’t include the word “Halloween” or just a quiet walk alone. But I’ve learned that rest is productive. Saying no isn’t a failure. And joy can live in the smallest moments, like pub dogs, disco lights or watching us cheer on the Lionesses.
Balance, for me, is never about getting everything done. It’s about learning to do enough to ask for help and to be kind to myself when the spoons are low. Some days I get it right. Some days I write it all down and try again tomorrow.
50 days of River 
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