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)

I’ve Signed Up For The Health Activist Writer’s Month Challenge

(Image via anewdaydawningforkymber.blogspot.com)

ETA: You’re not going crazy if you think you read this post before. For some reason, WordPress decided to unpublish this post. I blame the full moon.

And, just because, all those “Twilight Moon People”.

 

DON’T JUDGE ME!

I have a plan.

This April, WEGO Health will have a Health Activist Writer’s Month Challenge. I know, I know. I said I probably would not do something like this again. I did all 30 prompts last November but found it stressful to do all 30, I didn’t have as much time to check out the writings of others and it burnt me out.

My plan is to do a couple of posts a week. The remaining prompts I will save for throughout the year. I haven’t been writing much about my illness, especially since the last writing challenge. I like having these prompts because they will have me thinking and writing about my chronic illness, which is why I started this blog.

If you would like to join me next month, you can sign up by going to http://info.wegohealth.com/HAWMC2012.

Let’s write. Even if it’s only a post or two a week.

NHBPM – Titles Of My Future Book

(Image via WEGO Health)

I did it! I signed up with WEGO Health and am doing their National Health Blog Post Month (NHBPM).  Other than WordPress’s postaweek challenge this year, I have not done anything like this. Especially something where you have to post each day. But, there’s no time like the present, is there?

What is NHBPM? This is from WEGO Health blog:

As you may know, November is National Blog Posting Month or NaBloPoMo. It’s a month dedicated to the art of blogging, taking it to a new, challenging level by pushing all participants to blog every single day of the month. Sounds familiar doesn’t it?

In light of NaBloPoMo (and the success of our own awesome HAWMC event this part April) we are doing our own Health Blogger NaBloPoMo – a full month of health blogging! And we’ve got a bunch of great prompts catered specifically to online health leaders, bloggers, and anyone who wants to try their hand at blogging about health.

With this first post of November, the prompt is Titles of my future book. We have become such prolific writers after writing all those posts that we are now writing a book. We have to come up with 5 working titles and a quick book jacket synopsis. Because health is the “H” of NHBPM and having an invisible chronic illness has been so life changing for me, the titles are related to my health issues.

Living in Limbo – Living With an Invisible Chronic Illness

Join our off-balance author as she learns what it’s like to live with a diagnosis of an unspecified inner ear disorder. She is unable to work but, because the doctors don’t know specifically what the problems is, there is little in the way of help from the medical community.

What Do You Mean “Try and Find a Quality of Life”?

There are so many quaint terms and phrases that some of your favourite (and not so favourite) medical, legal and insurance people use when they are talking about YOU! Your off-balance author will walk you through the mine field of jargon that is now a part of you life.

Why Is Finding A Cure Taking So Long?

Your off-balance author talks to different health care professionals about some of the research that is and isn’t being done and some reasons why many chronic illnesses have no cure.

Thanks For Making an Assumption (YOU ASS!) But No, I’m Not Drunk! – And Why It’s Too Bad You Can’t Blame The Dizziness On Being Tipsy

Yes, having an invisible chronic illness sucks! Yes, people are nosy. Yes, people make assumptions. No, some of them haven’t learned that assuming makes asses of them! And, bless them, they keep on assuming. Which means that they help provide some of the humour in your day-to-day life. (Yes, there’s still some there.) Join our off-balance author as she weaves and bobs while trying to explain just how much more fun this inner ear disorder-thingy would be if it could be blamed on being tipsy. Cheers!

Do You Know Someone With An Invisible Chronic Illness?

Of course you do, writes the off-balance author. You may even be one of them. Join her as she talks about some invisible chronic illness statistics. Two that are discussed in the book: Did you know that almost 50 percent of Americans have a chronic condition? Or that 96 percent of them live with an invisible chronic illness? And that many of them look healthy and normal? Now that daily performance deserves an Academy Award!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J