As a long-time sufferer of a chronic illness, I have spent some time looking for ways to manage the symptoms, ways to ensure it doesn’t interfere with everyday life, ways to make sure it doesn’t interfere with my family living theirs.
Chronic illnesses cover all sorts of conditions including (but not exclusively) lupus, MS, cancer, diabetes, arthritis, COPD and for me, fibromyalgia. These are conditions that affect a person for at least 3 months and that is persistent or long term.
These conditions vary from diagnosis and symptoms as well as from person to person but they all have one thing in common, spoons. This was written about in an article by Christine Miserandino in 2003 coincidently named The Spoon Theory(1).
The short version is that a person with a chronic illness starts the day with a set number of spoons. The spoons represent the energy that person has and ultimately there is a limit to that energy. Every time a daily activity/task/event takes place, the person gives up one of those spoons. Once those spoons are all gone that person cannot reasonably function for the rest of the day and must rest until those spoons are replenished.
The spoons are often replenished overnight with rest, however a person with a chronic illness often has poor sleep or medical issues that affect sleep, so the quality of the next day’s spoons vary.
The concept itself is perfect. This is exactly how I feel. I am fully aware that there is a limit to my capabilities and that once my spoons are all gone, so am I. Fibromyalgia as a condition makes and breaks me. I have days when I can overcome the pain and exhaustion if only I have kept hold of those spoons.
Size and Function
The trouble with this concept is that spoons come in a variety of shapes and sizes. Spoons also have very specific uses.
For me, the size or function of the spoons I am given at the beginning of the day will determine the type of activities I can take part in, not just how many.
For example, on a good day I will feel like I have 100 serving spoons and can accomplish breakfast with the family, walking the dog, dropping my eldest at college, my youngest at nursery before getting to my secondary school where I work full time as a head of 2 departments, spending between 8 and 10 hours rushed off my feet doing the job I absolutely cherish before collecting my youngest, meeting my family for dinner and with any left over spoons gong to the gym to walk 5km and row 2km, then collapsing in bed to do marking planning or admin for work.
Don’t get me wrong, that day is tough and it is not pain-free and it is not easy, but it is manageable.
On another day I might wake with only 3 teaspoons, these teaspoons are rusty and deformed. They barely allow me the ability to work. I do work, but it is tough and painful and exhausting, and I can see why and how some people with chronic illnesses cannot work.
The trouble with spoons, you see, is that there are also days where you may have a few serving spoons, a few tablespoons and a few teaspoons. Then you seriously must consider how to use those spoons, and this will be dependent on the specific muscle(s) or nerve(s) that are hurting today. I might be able to use a big spoon to walk the dog because my legs are ok today, but to carry my bags to the car might require all the small rusty spoons because my arms hurt today. I might be able to do that 10-hour day plus parents evening because those spoons are shiny today but to change the bed sheets before bed could be impossible.
The analogy of spoons is great, and a massive help when trying to explain to family and friends what a chronic illness is like. But the trouble with spoons is that it must also be explained so that people understand some activities need bigger, better and shinier spoons than others. And sometimes there are just not enough spoons.
1.Miserandino, Christine (2003). “The Spoon Theory”. But You Don’t Look Sick. Retrieved 5 July 2017