By Maureen DeGarmo

I have been an Illness Warrior for forty years. That’s right…forty. I have a working theory that most of my mystery disease stems from a car accident that occurred in 1977. There is no way to prove it, because the only part of me that the emergency room doctors checked was my wrist. But, I am fairly certain that damage was done to my neck that fateful day, causing long-term difficulties.

You might think that I have had a long time to adapt to my problems. You would be right in a way, but, with such a long, slow decline I don’t even remember what it was like to feel good any more. The effect is that my way of relating to the world is largely determined by self-protective measures. These strategies are ingrained into my personality because I have used them for so long. Some of these are easy to understand, and others are not. Some of my friends understand, and others do not.

Sunglasses Indoors: Indoor lighting is often very harsh. Edison bulbs, florescent lights and spotlights all annoy my brain. Flashing lights are the worst. All of them are difficult to avoid. My best protection is wearing my sunglasses indoors. I wear the kind that wrap over my prescription glasses, so I can take them off when I want to. A few days ago, I was with a close friend who understands my condition and is very compassionate. She explained to her son, “the lights hurt her eyes.” Her acceptance of my unusual self-protection measure meant a lot to me.

Cover My Ears: One of the symptoms of my condition is chronic vertigo. Not the room-spinning kind of vertigo, but the sensation of being in a small boat on choppy water. As a result, I am easily startled by sudden noises, such as heavy machinery, music with a loud bass beat, or a door slamming. When possible, I cover my ears to muffle the noise. If I don’t do this, my vertigo is increased, so protecting myself is worth appearing a bit weird.

Avoid Bending Over: Bending over to pick something off the floor always results in increased vertigo. Recently, I was getting something out of the bottom rack of our dishwasher. From the next room, my husband could hear that I was out of breath. Although I cannot always avoid bending, I try to whenever possible.

Needing Help: Several years ago, I was on a day-long shopping trip with two friends. Without realizing it, I had stated more than once that I would get my husband to help me with something. One friend called me out on this habit of requiring assistance, in a way that was very clear to me that she did not understand my lack of independence. In that moment, I knew that I had to be careful in sharing not only details about my illness, but also with whom I shared them.

Walk With My Arms Up: I don’t remember when I realized that walking with my arms raised to the side, as if I were flying, helps with my balance. Somehow, it reminds me where I am in space and gives me a sense of stability. I am more likely to use this when I am alone, such as walking across a parking lot. I feel like a 4-year-old playing in the park, but it works for me, so I do it anyway.

Sleep Late: Among my family and friends there are several early birds who get up before the sun rises, take a walk, clean the house and feed the cat before my feet ever hit the floor. Fortunately for me, I am not married to one of those. We often get teased for how late we sleep, but I have gotten used to that. I know that sleep is one of the best things that I can do for myself. Especially when I have had an attack of insomnia, I try to sleep until my body wakes up naturally, despite the teasing.

Do you have self-protection measures that you do? Are some of them a bit odd? Please share your thoughts.