How to Get More Spoons When Chronically Ill
We don't like the term 'Spoonie.' Deal with that.
Getting enough spoons means trying to get enough sleep. Many disabled people do not sleep the whole night, as some could have sleep apnea. Mentally ill people not on medication hardly sleep through the night on top of this. Spoons are not all created equal. Sometimes a chronically ill person can have more spoons on some days rather than on others. It depends on what illness somebody has. We diabetics are taken out by low blood sugar or, for that matter, its opposite, high blood sugar. People with lupus can be fine one day and sick the next. Somebody with sickle-cell anemia is not feeling well during a crisis. People with hypothyroidism or over-active thyroid also called hyperthyroidism definitely have varying levels of energy.
Spoons are merely a visual aid to convey how much energy the person with a disability has. Mobility impairments can be quite a drain as people with those sorts of problems don’t always have energy. Energy is a precious commodity in today’s polluted world. There are some who do not have energy limits and some who do. Energy varies by the day and a quality night’s sleep. The chronically ill have to limit activity sometimes. For example, I need to clean my bathroom but on a day when I have the energy for it, right?
Christine Miserandino came up with the spoon theory in her essay “Spoon Theory.” She uses the spoons to come up with a metaphor for how much energy certain daily tasks require. She handed her friend spoons, giving her a spoon for each physical activity she does. Her point is that her spoons must be rationed daily in order not to run out of energy. Sleep does recharge the body, but for people with autoimmune disorders like me, a full night’s sleep doesn’t always work. I’ve had psychiatrists who pester me to get enough sleep on a regular basis, in general, to quit waking up in the middle of the night. You see, I’m close to succeeding in this venture. I just don’t know when yet. Some disabled people can get tired trying to pass as not-disabled. I should know as I’m one of those. I can hide many of my disabilities. This is hilarious because I managed to hide them from a friend who didn’t notice squat.
My insulin pump is a low-profile venture since I do not need to use a needle for it. Some chronically ill people do not have the energy for work or school. This is why I want to continue doing my work from home thing. If only because working from home is a great way of handling my disability all around. I can afford to hide it indefinitely from employers. But see, type 1 diabetes, is hard to hide. You can’t spend your life hiding your disabilities. Sooner or later, they show. Every task a disabled person completes requires a spoon to be drained from your energy supply when you have a chronic illness.
Chronically ill folks, or people with invisible disabilities, are often referencing the spoon theory, in effect because the world doesn’t understand us. We may not seem tired to the boss we have for example, and getting this across can be difficult. Since we seem energetic but that is us trying to cover for not feeling well outright. Some of us do not use the term “spoonie” to describe ourselves. I know I don’t. The blogger on the Scary Mommy website describes living with migraines that cause sensitivity to light and sound on bad days. It is hard for us disabled people to indefinitely hide our pain, you see. Sometimes it just breaks through big time and we cannot do anything. It depends on you, the non-disabled person, to understand how we are working on hiding our pain. Illness can make work pile up for us chronically ill people and then we can catch up when we are well. You see, we need support, not divisive health care policies and no means of treating our illnesses if the pre-existing condition clause comes back. If that comes back, there is no getting out of what that will do to disabled people who keep trying to make money. This is why I want to plan protests, to make sure they do not remove the pre-existing condition clause that affects many disabled people.