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Spoon Theory: managing energy levels with a chronic condition

I still remember the day I was diagnosed with narcolepsy (a chronic sleep disorder that causes excessive daytime sleepiness) at the beginning of 2019. I remember sitting nervously while sitting in the waiting room for my results of my sleep study, I remember the shock and wanting to fight back tears when the practitioner labelled me with a life long medical condition, I remember feeling lost when given a script for medication with significant side effects and no other advice or resources, and I remember the frustration when trying to advocate for myself to employers, doctors, friends and family to make sure I got the support I needed. I needed a way to explain my support needs and I needed validation for what I was experiencing. That is how I discovered spoon theory.

Spoon theory is a metaphor that is used to describe the amount of mental or physical energy a person with a chronic illness or disability has available for daily activities and tasks. The theory was developed by Christine Miserandino, a woman who experiences Lupus Disease, as a way of explaining her condition to family and friends (Miserandino, 2003).
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Spoon Theory uses spoons as a visual representation of how much energy a person with a chronic illness may have and how they must plan out their day in advance so they do notrun out of energy before the end of the day. In the chronic illness and disability community, people with a chronic illness often refer to themselves as “spoonies”. I often use this theory to explain living with chronic pain or a chronic illness to my clients, and to explain why I need to leave parties and events so early to my family and friends. If I use all my spoons in one day, it can take me a few days of recuperating to build them up again.

Here are some tips and tricks when it comes to managing your energy levels:

  • Get to know your body and its limitations – if you know that you need a certain amount of sleep, or if you need breaks during the day, or can only work a certain number of days a week, then that’s ok! It isn’t worth pushing past your limitations.

  • Pace yourself – If you are having a low pain/high energy day, it is tempting to try and get as many things done as possible, but if you use all your spoons in one day, you might start “borrowing” spoons from the next day and could need longer to recover.
  • If a task is too difficult, then see if there is another way to do it or if there is adaptive equipment that can make it easier. Your occupational therapist will be able to help you explore your options to help you find ways to do the things you want and need to do (grading and adapting).
  • Have a balanced diet – sugary and processed foods can increase inflammation which can make pain and fatigue worse, so it is important to eat healthy and nutritious foods.
  • Have a consistent sleep routine – it is important to go to bed and wake up at the same time each day, even on the weekend, as it trains your brain into a routine which will make it easier to get a better night’s sleep. Practicing sleep hygiene can also improve sleep quality which in turn improves pain and fatigue.
    (https://www.cci.health.wa.gov.au/-/media/CCI/Mental-Health-Professionals/Sleep/Sleep—Information-Sheets/Sleep-Information-Sheet—04—Sleep-Hygiene.pdf)
  • Exercise – it might seem a bit ironic being told to exercise when you are fatigued and in pain, but it is so important to get regular exercise in managing chronic conditions. Scheduling in short walks into your day or finding an exercise group are great places to start.
  • Plan your day – having a diary or a planner can be a good way to plan out your day so you can make sure you are using your spoons efficiently. So, if you know you have a big event coming up, you might not want to plan anything too big the day before or after.

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