In January 2013, my life shattered. I was bedridden and reluctantly became fully dependent on my parents for everything. Normal daily tasks, such as showering, became arduous. This is because I had no energy, but when you're sick with chronic fatigue, it can be really difficult to explain this to those who have never experienced it.
That's how the spoonie community was born. The Spoon Theory is a way to explain very finite energy levels to someone who doesn't fully understand what it's like to have a chronic illness. The amount of energy someone has in a given day can be represented by spoons. Let’s say the normal, healthy person wakes up every day with 100 spoons. In contrast, someone with Lyme, chronic fatigue, or any chronic illness wakes up with far fewer than 100 spoons. The more severe the illness, the fewer the spoons each day will bring. Plus, mundane tasks like showering, running errands, or interacting with people can "cost" more spoons for someone with a chronic illness. The good news is that the number of spoons can increase with healing and recovery. Here’s what that really means in terms of living with a chronic illness that I wish people would understand:
1. Someone with a chronic illness may not have any spoons for a long time.
This means that he or she may not want to do much of anything for a long time. This is because doing anything (even showering) requires spoons, which she doesn't have! I've been there—and it's no fun. But friends and family understand that we're not just being lazy; we're really sick; it can be a huge weight off.
2. Every activity requires spoons.
Showering may require three spoons, but walking to the mailbox may require five. If you have only three spoons for a given day like I did, showering may be all you can accomplish without ending up back in bed. Once I started treatments, I was able to increase my daily spoon count with time. However, the treatments caused die-off (or Herxheimer reactions), which were often worse than having a severe spoon deficit, as they produced unbearable levels of pain (migraines, nausea, burning joints, etc.). But when it comes to chronic illness, sometimes it's one step forward, two steps back.
3. Just because you "earn" more spoons doesn't mean they are endless.
Put simply, the have more spoons you have, the healthier you are and the more you can do. Once I began to recover, my capacity to do anything both physically or mentally gradually increased. However, I still had to choose my activities wisely, as something like going to lunch with a friend (15 spoons) was much more expensive than a phone call (five spoons). Basically, you cannot spend what you don’t have. If you do, you will pay!
4. Recovering from spoon debt can take weeks.
In year three of my illness, I attended a wedding. At that point, my spoon threshold was higher, let's say about 20 spoons a day. I was only there for less than an hour, and it was very close to my house. But I spent the next three days afterward solidly in bed. This is because I didn't realize that at the time, attending a wedding required somewhere around 80 spoons. Since I'd overspent by 60 spoons, I had to spend three days in bed to make up for it.
5. When you have a chronic illness, you have to choose your activities wisely.
This is because you have very few spoons to spend. Even small social interactions like texting can require a healthy amount of spoons. I cannot tell you how many times I got off the phone with a friend and had to go to bed. It’s just the reality of chronic illness.
6. Being a spoonie doesn't necessarily equate to looking sick.
I cannot tell you how many people said, "You look so healthy!” when I was severely ill. They were greatly deceived. I may have looked healthy, but I had a tremendous spoon deficit. Being a spoonie doesn’t necessarily equate to looking sick. It just means you have a severe deficit in spoons and energy.
7. In order to recover fully, you need to return to a healthy spoon threshold.
Let's say a "normal" spoon count is 100. Getting there isn't easy—it took me over four years to do so and required an entire team of medical professionals, medications (both herbal and prescription), light therapy, tapping, heavy metal detoxification, and EMF protection.
Chronic illness comes in all forms: Here's one woman's story of how a vitamin deficiency triggered her chronic illness.