This post was written by one of my favorite clients and truly special person…who deals with chronic pain on a daily basis.
Chronic ill health, disability and fatigue:
Where did my energy go?
Dr. Peter Phillips
A few months ago during yet another arthritis flare, I happened across a set of self help articles talking about ‘spoon theory’. Not having any particular feelings one way or the other about cutlery I continued reading … and discovered an empowering short hand to communicate with others with chronic ill health and/or disability, and health and care professionals. It really is a super simple and very effective idea.
Spoon theory posits that people without chronic ill health/disability wake up with enough ‘spoons’ to face the tasks and expectations of the day. They can generally attend to personal care, their home, work/education and (even) social plans, without the fear they will completely run out of energy and crash.
Let’s face it; it is hard to communicate with others about pain, disability and function.
Some days we wake to the day after a truly refreshing and restorative sleep, with less pain and/or fatigue, and other days, having had as much sleep and rest, feeling utterly exhausted and with lots of pain. It’s hard to live like this. It makes things difficult to plan for, because it is often very hard to be able to predict from day to day how pain/function and energy will be.
I think of spoon theory like this; (today) I woke up with less pain; and face the usual daily tasks of the morning: waking up, getting up, managing medicines, toileting and bathing/showering, preparing breakfast and eating, cleaning up.
Spoon theory allocates ‘one spoon’ to each of these tasks.. so, just starting the day (without responsibilities towards others) takes for me eight spoons (a spoon for each of those tasks listed above). But I only woke up with ten spoons that day… (so I have to prioritize items and put others off until a time I have more spoons)…
Some days I wake and it feels like I have 20 spoons, great! I have enough energy to start the day and more energy/spoons for the rest of the day. Other days I wake up and it feels like I have only 4 spoons in total (!). Difficult decisions, low mood and frustration often used to result from such mornings – until I started to take on that my spoons/energy really vary enormously; but that on the positive / helpful side of that equation; I remember there are days I do have enough spoons to have a full day and a full evening, whilst accepting that there will be other days where I can barely get through my morning tasks, get myself on the couch before I’m running on empty.
The idea of ‘pacing’ I have found to be one of the most difficult bits of being disabled, and of working age (expecting more of myself than is realistic). It’s super difficult to accept those days where I’m too tired/fatigued to even concentrate on simply watching a movie or TV show; but this said, Pacing is one of the most important aspects of managing pain and function. Being more aware of your physical limitations – of what level of activity is possible without exacerbating pain and reducing function, and what level of activity generally results in ‘pay back pain and fatigue’, that hideous experience of waking up and being hardly able to move.
Thank you, Peter, for a helpful image when discussing chronic pain.