If you’ve been living with a chronic illness for a while, you’ve probably heard of the Spoon Theory by Christine Miserandino. For someone who’s seriously sick, each day starts with a limited amount of “spoons” of energy. They carefully have to decided how you can best spend each one, knowing that even mondain tasks like taking a shower or making lunch costs you precious spoons.
The Spoon Theory is a helpful analogy of what it’s truly like to live with chronic illness or disability. But how does it work in reality? How do you decide how to spend your spoons? What do you do when you have no spoons left but still half a day ahead of you?
In my experience, there are two broad strategies: pacing and push-and-crash.
I used to be the queen of push-and-crash cycles. At the time, it really was the only way to get things done: resting up and preparing before an event – going to school, necessary shopping trips, hanging out with family and friends – putting every last drop of effort into getting to and through the event and then… crash. Hard. It meant my symptoms would exacerbate and I couldn’t do much else but rest the next day(s) to recover from that activity.
When I was younger, this strategy worked fine – thanks to the help from my parents. Sure, it was far from ideal, but what part about living with chronic illness is? So I pulled all-nighters to finish my thesis, because I was going to feel horrible from a normal day’s work and would need to recover the next day anyway, so why not push a little harder to actually get some results? Once in a while I would push my body to its limits to dance, go on a trip, do the things that make life exciting.
But then I landed an internship and part-time job, with a long commute. Suddenly I had to get better at managing my energy wisely so I’d make it to work the next day again with a reasonably clear mind and functioning body.
Suddenly I had to get better at conserving enough energy to appear on the job with a reasonably clear mind the following day. That was a challenge. I didn’t know all the little energy-conserving ‘hacks’ yet that make life with chronic illness easier.
And then my kids came. There’s just no escaping it: no matter how exhausted you feel, you have to be there for them again the moment they wake up the next day – which, in my children’s case, is at the crack of dawn.
It was time for a different approach.
Pacing: The Practice of Managing Your Energy
A few years ago, my husband said something important: “It’s ok to have some energy left at the end of the day”. That was a major light-bulb moment. I was so used to having to give every activity my all – because otherwise even the simplest things wouldn’t get done – that, now that my health had gradually improved, I still spent it every last drop. Of course, my must-do list had grown with every new responsibility, but not everything has to get done today.
Like Bruce Campbell puts it, pacing means finding the right balance between activities and rest for your personal situation. You can do that by purposely planning your to-do’s for the day, including breaks and the buffer-time you need to switch from one activity to the next. The goal is to try to get meaningful things done, even on bad days, and to avoid overdoing it when you feel good, only to pay for it later.
So what does pacing look like in daily life?
What pacing means in practice depends on your lifestyle, current health status and activity level. But here are some guidelines to help you manage your energy wisely:
1. Know yourself – and your boundaries
- What are the specific warning signs you’re pushing yourself too far? Do you feel dizzy, out of breath, where does it hurt? If you have a hard time sensing when you’re reaching the point of exertion, you could consider wearing a heart rate monitor to track how fast your heart beats right before the energy drains out of you.
- What time of day do you usually feel at your best or at your worst? Maybe it takes a while for you to get going in the morning or you’re sensitive to the midday slump. To plan a productive day, it helps to know when you’re most likely to feel fit and focussed and when it’s time for a break.
- Which activities cost you a surprising amount of energy? Have you ever been puzzled over how doing seemingly insignificant things can make you feel worn out? For example, nowadays I have little trouble walking moderate distances, but changing clothes still makes me tired. If you’re unsure which activities drain you, you could keep a log or bullet journal to pinpoint your personal energy vampires.
- Find a metaphor that represents your energy management. I like to think of energy management in terms of a battery: “I woke up with 75% of energy, doing my everyday routine takes up about 45%, meaning I have some energy left for one big cleaning tasks before I need to recharge…”. Maybe the famous spoon theory works great for you. Whichever metaphor you come up with, having an analogy of how you spend your energy can be a useful tool for pacing.
2. Schedule activities and breaks
Predictability may sound boring, but for spoonies, it’s vital. Having a regular routine – not a strict schedule – helps you save precious energy because you can do returning tasks on autopilot. It also ensures you alternate activity with rest, to avoid push-and-crash cycles.
I could write an entire chapter on planning with chronic illness – and one day I will – but in short: use a planner, set priorities, keep your daily to-do list short, and develop routines.
3. Take breaks, even when you don’t feel tired yet.
The whole point of pacing is stopping before you become (too) exhausted. That can be hard to notice: if you’re like me, you might unconsciously shut off or ignore signs of your body to get through the day.
It can help to visualize ‘zones’:
- The comfort zone, in which you feel reasonably good;
- The uncomfortable zone, when you experience symptoms, mild pain or fatigue within your ‘normal range’;
- The danger zone, when you’re pushing your body to it’s limits and risk relapse or deterioration of your frail health.
When you live with serious illness, the line between the uncomfortable zone and the danger zone is thin. But listen to the warning signs and take pre-emptive rest when possible. In my experience, spoons aren’t really transferrable to the next day, but your body will notice the difference when you don’t constantly spend more energy than you have.
4. Alternate between different types of tasks
When you’re a high-functioning spoonie or you simply have a lot to do, one way to pace yourself without resting is to switch between physically, mentally and emotionally-demanding activities. For example, after making breakfast, taking a shower and getting dressed, you could sit down and do something mentally stimulating, like reading, writing emails or making important phone calls.
The reverse also works: when you need a short break from studying or working, it helps to do something physical – stretch, walk, get a cup of coffee – to restore your brain power rather than browsing social media or news sites.
5. Rest effectively
You might think that because you spend a lot of time lying in bed and sitting on the couch that you’re resting enough. But being physically inactive is not the same as high-quality rest. Binge-watching Netflix offers a welcome escape from reality, but it doesn’t activate a relaxation response in your body the way that yoga, meditation or a warm bath do.
6. Have a back-up plan
There will be times that you’ve run out of spoons before the day is over. To keep yourself from pushing-and-crashing because you simply have to put food on the table or get the kids into bed, make sure you have a loose back-up plan for exhausting days:
- Stock the freezer with nutritious meals you only have to heat up when you’re too tired to cook. You could also master a few low-effort cooking tricks to put a healthy dinner on the table.
- Try these short-term strategies to survive your workday when you feel exhausted.
- If you’re a parent, have some stickers, coloring book or educational videos stashed away for ‘special occasions’ (read: sick days). It also helps to have a list of low-energy activities at hand to keep your kids entertained when your symptoms flare-up.
- Save a fresh set of clothes, underwear and pajamas in a special drawer. That way you always have something clean and comfy to wear even if you’re unable to do laundry that day.
- In that spirit, keep a back-up supply of essentials like soap, toiletpaper and over-the-counter drugs.
Having supportive systems in place helps you get through bad days without getting trapped in a negative spiral.
“Remember, slow and steady wins the race.” – Ieyasu Tokugawa
Pacing seems logical and easy to do, but the unpredictability of living with chronic illness can still make it challenging. In times when you have a lot on your plate or your symptoms flare up unexpectedly, you can’t always avoid pushing yourself too far. When you’re paying the price for not pacing, take a moment to get back on track again. First, make sleep and rest a priority. Next, do less activities than you could, to ‘collect some spoons’ to restore. And finally, create a realistic plan of action to bounce back and prevent another push-and-crash cycle.
Do you need to pace to get things done with chronic illness? Are you good at it and if so, what are your best tips and tricks?
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