I’m sad today. I feel worn out and worn down. I’m frustrated by the physical reality of my body and with how I’m dealing with it. In the last few weeks my energy levels have plummeted for no obvious reason, and they were already pretty low.

Things that I could do relatively independently, I’m now finding difficult. This is impacting me in several different ways, and they’re all tangled up together. I’m hoping that writing this will help me separate out the issues.

1) Straightforward Frustration: There’s the simple frustration about what I can do for myself. I haven’t yet recalibrated my expectations. Pacing’s a big part of how I manage day to day and understanding how much energy a task takes and planning accordingly is crucial. Now they’re suddenly taking way more out of me, and that means I can do even less. I’ve had to drop out of things I was looking forward to, and I feel I’m neglecting the people I care about. And because nothing specific has happened to trigger this change it’s hard to explain or make sense of it.

2) Asking For Help: I need even more physical help than I did a few weeks ago. But I’m finding it surprisingly hard to ask for. This is less of an issue with my in-work PA Claire because she sees me most days and is tuned into my body and how I’m doing. She’s been offering more help and prompting me to explain this new situation to the rest of the team too. But for those PAs I see less often I have to explain each time what extra help I need, and I worry that they think I’m just being lazy – I’m certain that none of them really think that, but still the thoughts persist.

3) Ongoing Uncertainty: I don’t know if these changes are because I’ve overdone it a bit recently and are therefore short-term, or if it’s a more permanent shift in my energy. I find that uncertainty challenging and it’s affecting my mood.

Everyone feels worn out from time to time so it can be hard to explain how intense fatigue differs from regular tiredness. It’s the sort of crushing exhaustion that makes my body feel heavy and affects my ability to think straight.

I don’t feel sad because I experience fatigue, or because my energy levels have gone down. I think my sadness is actually coming from a sense of isolation, from feeling disappointed at not being able to do all the things I’d like to do, and from not having the energy to chat to the people I love.

OK, so writing this has helped me clarify what I’m feeling. Now I just need to work out what I can do about it. Here are my first thoughts:

• Be Open: I’m going to share this post with my friends, family and support team so they understand that this shift has happened

• Conserve Energy: I’m going to try to conserve my energy in every task, asking for help and not attempting to muddle through on my own

• Let Go: I’m going to start banishing negative thoughts and worries, particularly ones I know have no basis

• Prioritise Joy: When it comes to using what energy I do have, I’m going to prioritise things that give me joy or support my wellbeing. I’m also going to be open with others about how I’m doing and trust that they’ll understand if I need to bale

As I’ve got to the end of this post I’ve found myself thinking about a beach near Blackpool, where my mum’s from.

There are vast expanses of seemingly solid sand made up of tiny grains. Sometimes this sand runs on the wind like a fast-flowing river, at others it’s moved by the rolling tides and settles into deep peaceful dunes.

I might start thinking of my energy as grains of sand that can accumulate, that can be re-shaped, that can get whipped away by unpredictable gusts, or that can settle in stable rhythms.

It might not be as well-known as Spoon Theory but I’m hoping that ‘Sand Theory’ and the commitments I’ve made to myself tonight will help me navigate these changes, however long they last.