HAWMC: My Chronic Illness Time Capsule

Welcome to the first prompt of the Health Activist Writer’s Month Challenge by WEGO Health for April 2012. Today’s prompt asks what would we put in a time capsule, to be opened in 2112, that focuses on me and my health and what might people think of the contents.

First, a bit about me. I have an inner ear disorder that is an invisible chronic illness. It’s called invisible because you can’t see what the physical disability is that I have by looking at me. Most of the time I appear “normal”, unless my ear monster is acting up, then you may see me walking and think that I’ve had a drink or few. And chronic illness is different from an acute illness. These are the definitions of acute and chronic illness from The Medical Dictionary:

Acute

any illness characterized by signs and symptoms of rapid onset and short duration. It may be severe and impair normal functioning.

Chronic

any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning.

The Ear, Nose and Throat doctor could not give me a specific diagnosis but was able to confirm that something was wrong with me physically. Ask people who have an invisible chronic illness and there’s a decent chance that someone they have seen in the medical profession decided that the illness is psychologically-based.

I have issues with disequilibrium, a feeling of being off-balance. I very rarely get close to a vertigo attack but I owe that to the fact that I will, for example, sit at my computer and read the newspaper, catch up on emails and visit various sites while I have my breakfast. When I’m done, I lie down so that I give my ears a rest. Not my arms, legs or other body parts but my ears. And I have to do this throughout the day. If I don’t, the disequilibrium gets worse and worse to the point that I lose my balance and start to fall to the side. Because of this, I can’t work so I’m on disability because of my ears.

When I first became sick, I used the analogy of being on a boat and bobbing along the water as a way to describe how it felt inside my head. I chose some pictures and videos for my time capsule and a short description on how they show what it is I’m feeling in my head as I go through my day.

I’m not going to try and guess what the people of the year 2112 may think of the contents of my time capsule. What I hope to accomplish with the pictures and videos is to help bring some understanding and awareness to how I and others feel on a daily basis.

I looked at this wonderful picture and immediately saw my ear monster in the wave on the right. He’s checking out what’s happening, his hands on the wall ready to propel him into action. Each day offers a new way to shake things up for me. Each day, I am affected.

(Image via thinking-stoneman.blogspot.ca)

I chose these videos because I think this best represents how it feels inside my head. Imagine you’re on a boat, no oars to help paddle. No way to gain control of the boat to get to the firmness and stability of the shore. You are at the mercy of the waves. Some days I feel like I’m in a small boat with lots of motion, other days I feel like I’m in a larger boat but with less motion. I still feel movement,  but the size of the boat helps determine how much motion I feel.

On my good days, I will feel small ripples. There’s not too much motion, but enough to let me know the monster is always there.

(Image via physics.uoguelph.ca)

Some days I have no control over my ears. A cold, allergies, using too many of my spoons (read The Spoon Theory if you don’t know what I mean) or changes in the weather produces a constant motion in my head, even before I get out of bed.

(Image via free-extras.com)

Sometimes I’m sitting still, reading or watching tv and I am not physically moving, but inside my head it feels like a wave has slammed into me, shoving me from my spot and I’m falling over. But again, I’m sitting still.

 (Image via en.wikipedia.org)

On good days, I feel a bit of movement in my head, but not that much and I’m able to be a little bit active. Go for a walk, get a few groceries, the things I used to take for granted before I got sick.

(Image via missrosen.wordpress.com)

This is Mirror Lake in China. I chose this picture because for a short time each day, the water seems almost still. On rare days, I get very lucky. All is calm with my world. I never know when those days will happen. I take them when I can and enjoy them.

(Image via travelblog.org)

However, we know that no matter how calm things appear on the surface, there is always movement underneath. And some days, it is overwhelming and I spend a lot of the day in bed.

(Image via mysuburbannews.com.au)

Each day, as I’m waking up, I feel like the person in the picture below, looking, searching for clues as to how my day will be and how my ears and the ear monster will be treating me that day.

(Image via davidniblack.com)

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4 comments

  1. An incredible visual and prose description of what it looks and feels like to deal with your chronic health issues. I think the folks of 2112 will be struck by the way you represented, through pictures and prose, how things felt for you, your emotions surrounding it, your coping mechanicisms and your strength — the things I take away from your capsule in 2012,

  2. A very good way to represent what our vestibular disorders can do to us.
    Every day….we must face the day, and see how our ears, and ear monster will be treating us that day.
    Very good descriptions, and visuals.
    I hope when it is opened in 2112, people will think….how could they not have fixed that…it’s so easy to fix now.
    : )
    hugs, from another with an ear monster.
    w

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