Living with any chronic condition or disability can sap your energy. Sometimes that’s directly due to the way the condition affects your body. Sometimes, it’s due to living in a world designed for able-bodied people. Sometimes, it’s a mix of both.
In 2003, a close friend of writer Christine Miserandino asked her what it was like to have lupus. The friend already knew many facts about the condition but was digging deeper – what was it really like to live with lupus? How did it affect daily life?
That’s when Christine grabbed a handful of spoons, 12 in all. As Christine explained, each spoon represented a finite amount of energy. Healthy, able-bodied people don’t even have spoons—they don’t need to ration their energy in this way. But, as Christine explained, everything she did cost a spoon—everything—getting up, taking medicine, showering, getting dressed—everything had to be counted.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely since when your “spoons” are gone, they are gone.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarised that she had to eat dinner, but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots…
I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing…It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
Spoon theory, as it’s now known, has become a helpful way for many people with disability or chronic illnesses to manage their capacity – and explain it to others.
When you have limited spoons and each one counts, you want to spend as many of them as possible on activities that bring you joy. So, let’s take a look at a few ways to conserve energy when completing mundane tasks and a few ways to promote deep, restorative sleep.
Table of Contents
ToggleReducing the energy required for daily tasks
As Christine demonstrated to her friend, just getting through the basics of daily life can use up a lot of spoons.
Occupational therapists (OTs) can show you tips and tools that help you stretch those spoons a little bit further. Adaptive equipment and energy conservation techniques can help to improve your quality of life.
You can conserve your energy by:
- Prioritising – if you can’t do everything, what matters most today?
- Planning – break each task into smaller stages.
- Positioning – sit down whenever you can (yes, use a shower chair), and take rest breaks.
- Pace yourself – give yourself time to do what you need without rushing.
In practice, that may mean:
- Ordering your groceries online.
- Sitting down to get dressed or prepare meals.
- Wearing easy clothes that don’t involve fiddly buttons.
- Using adaptive equipment to make tasks easier, such as:
- Shower chairs, handheld showerheads and a long-handled sponge.
- Using electric tools – toothbrushes, shavers, can openers, blenders.
Your OT can assess your needs and provide personalised advice to make daily tasks easier for you.
How to improve sleep quality
While you’re sleeping, your body is busy. Sleep supports your cardiac function, metabolism, memory and mood. It gives your body a vital opportunity for recovery and repair.
When you don’t get enough sleep (or don’t sleep deeply enough), it begins to have a negative effect on your quality of life.
The University of Washington reports that 40% of people with disabilities report long-term sleep difficulties. Sleep problems are almost 3 times more common in people with brain injuries, spinal cord injuries, multiple sclerosis and Parkinson’s disease than in the general population.
A 2019 study explored sleep difficulties in people with chronic pain due to conditions such as spinal cord injury, back pain, multiple sclerosis, osteoarthritis, limb amputation, diabetes, post-polio syndrome or muscular dystrophy.
The researchers found that several factors contributed to poor sleep in these patients. Sleep became more and more difficult if the person had:
- A greater number of painful areas
- More symptoms of depression
- A tendency to catastrophise (to imagine the worst).
The results suggest that improving sleep may require better pain management and greater mental health support.
Occupational therapists can help you to:
- Minimise physical disruptions that disturb your sleep:
- Working with your wider healthcare team to improve any underlying conditions (e.g. stabilising blood glucose levels or easing arthritis pain).
- Ensuring treatment for mental health conditions like depression or anxiety.
- Using sleep aids like a weighted blanket to soothe your nervous system.
- Helping you create an environment that promotes good sleep:
- Finding the right mattress.
- Controlling darkness, temperature and humidity.
- Using sleep tools like a weighted blanket, an eye mask or earplugs.
- Showing you sleep positions that may be more comfortable.
- Restructuring daytime activities to promote better sleep:
- Your OT can help you review your typical day to see where you could make changes that could help you sleep better – perhaps less time in your bedroom during the day, for example.
- Helping you improve sleep hygiene. Tips include:
- Having a regular bedtime routine
- Doing some meditation or deep breathing exercises before sleep
- Changing what you eat or drink in the hours before bedtime to reduce the likelihood of needing the toilet overnight
- Setting a technology curfew – remove all screens at least an hour before bedtime. Kids may complain about this, but it can make a significant difference to a child’s sleep).
How can Enabled Designs help?
Our mission at Enabled Designs is to help maximise independence through high-quality home modifications and assistive technology.
Our team of outstanding occupational therapists can tailor the best knowledge on energy conservation and sleep quality to your needs, factoring in your mobility challenges and your lifestyle.
Please contact us today.
Disclaimer
All information is general and not intended as a substitute for professional advice. Enabled Designs can consult with you regarding your individual health needs.
References
- But you don’t look sick, The spoon theory, https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory, [Accessed 4 April 2024]
- Washington Post, Spoon theory and how I use it to manage chronic illness, https://www.washingtonpost.com/wellness/2023/01/14/spoon-theory-chronic-illness-spoonie/, [Accessed 4 April 2024]
- Wayne State University, Adaptive equipment and energy conservation techniques during the performance of activities of daily living, https://cphs.wayne.edu/occupational-therapy/resources/lifestyle_-_energy_conservation_techniques_for_daily_living_1.pdf, [Accessed 4 April 2024]
- Korb L, O’Regan D, Conley J, Dillon E, Briggs R, Courtenay K, Perera B. Sleep: the neglected life factor in adults with intellectual disabilities. BJPsych Bull. 2023 Jun;47(3):139-145. doi: 10.1192/bjb.2021.122. PMID: 34937594; PMCID: PMC10214421.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10214421/, [Accessed 4 April 2024]
- Spectrum News, Autistic children’s sleep problems may stem from sensory issues, https://www.spectrumnews.org/news/autistic-childrens-sleep-problems-may-stem-sensory-issues/, [Accessed 4 April 2024]
- Spectrum News, Sleep problems in autism explained, https://www.spectrumnews.org/news/sleep-problems-autism-explained/, [Accessed 4 April 2024]
- University of Washington, How to sleep better, https://agerrtc.washington.edu/info/factsheets/sleep#, [Accessed 4 April 2024]
- Rocío de la Vega, Jordi Miró, Rosa Esteve, Carmen Ramírez-Maestre, Alicia E. López-Martínez, Mark P. Jensen, Sleep disturbance in individuals with physical disabilities and chronic pain: The role of physical, emotional and cognitive factors,
- Disability and Health Journal, Volume 12, Issue 4, 2019, Pages 588-593, ISSN 1936-6574, https://doi.org/10.1016/j.dhjo.2019.04.001, [Accessed 4 April 2024]
- Raising Children Network, Screen time and digital technology use: how it affects child and teenage sleep, https://raisingchildren.net.au/preschoolers/media-technology/screen-time-healthy-screen-use/screen-time-sleep, [Accessed 4 April 2024]