Lifestyle

A Chair Named Joplin: Navigating a World with Chronic Illness

Chronic Illness Induced Anxiety

Growing up with a chronic illness is not easy. Growing up with a chronic illness that causes your whole world to become an unpredictable whirling dervish of vertigo is downright terrifying!

 As you might have guessed, the anxiety one can be left with can be pretty extreme. Any place that is loud, crowded, big, unfamiliar can turn me into a hyperventilating, jittery, sweating shell of a human being.

As an adult, some of the anxiety has dissipated—I’ve learned my limits and I try to live my life within them—but living this way, in a world full of limits, has caused me to miss out on a lot.

I have spent much of my adult life being a watcher and not a joiner. It is difficult for friends, especially new friends who didn’t grow up with me, to understand why I have to place these limits on myself.

Often times, these new friends find it difficult to understand why I can’t drive or work outside of the home. Friends new and old find it difficult to understand why going places without my husband by my side can be scary for me.

My husband knows what to do when the merry go round takes over. He is used to the spinning, the vomiting, and the anxiety that comes with it. I am used to the way he holds me when helping me sit down or helping me back to the car—he is my emotional support animal—and sometimes, I use him too much as a crutch.

Even with my husband by my side, however, I am not guaranteed a calm mind and even heart rate. There are some places that not even HIS presence can calm my anxiety.

I’ve realized, as I’ve grown older, that many times my anxiety about going to a place will be really bad—but once we arrive, and I become comfortable and realize I am going to be ok—my anxiety vanishes.

Anxiety is a trigger for the vertigo. It comes with the territory of having Meniere’s disease. That being said, just because I experience anxiety does not mean I will get vertigo—it only means that the chances are higher to feel light headed if not all together dizzy.

I became tired of living my life on the side lines—watching people enjoy things I only dreamt of. Which is where Joplin comes in!

Joplin is my wheelchair—as in Janis Joplin.

To Get a Chair or Not Get a Chair? That is the Question…

It took me a long time to decide to get a chair and even longer to use it—longer still to blog about it.

I had contemplated using a chair for over a year before taking the plunge. My reasons for wanting one were simple:

  1. If I get dizzy while in public, I have a safety net. Having a safety net helps keep my anxiety at bay.
  2. My husband’s will have less worry knowing that I am seated if vertigo set in.
  3. I could go to all the places I would have been too afraid to go to without one.

Those aren’t the only reasons but they were the most important.

My reasons for NOT wanting one were also simple:

  1. I am technically able to walk (even though it is massively more difficult when vertigo sets in).
  2. People will judge me because I am technically able to walk…

Yup, that about sums it up—but then something happened that changed my whole opinion on the matter.

The Deciding Factor

A video was posted on Facebook of an aquarium in Japan. Fish of all different types swimming peacefully. No sound, no fancy lights, no hub bub—just the most amazing video I had ever seen.

I had never been to an aquarium. Most of them are so large that I am sure my anxiety would be through the roof. I had always wanted to go…but I never had the guts. I didn’t want to spend all of that money on a ticket and then waste it by getting “sick”.

That’s when I decided to do it. Getting a chair would be the difference between never going to an aquarium or going and suffering anxiety the whole time—or going and being able to relax and enjoy myself.

I chose the latter! I ordered Joplin from Amazon and then immediately began looking up aquariums. The aquarium in the video featured whale sharks and I knew I just HAD to see one in person! The only aquarium that had one in North America was Atlanta, GA.

The very thought of going to Atlanta was enough to give me anxiety. I had stayed right outside of Atlanta once with my husband when he was on a business trip. Driving through Atlanta was enough to convince this small city girl that it wasn’t the place for her.

A few months had passed since ordering the chair and actually planning the trip. The trip was ultimately set in stone once I learned that my favorite Broadway musical, Les Miserable, would be coming to Atlanta.

Going to an aquarium AND a Broadway play?!?!?! SIGN ME UP!

Both of these things are things I had only ever dreamed of!

I booked the trip and the next thing I knew—I, my husband, and Joplin were off to Atlanta!

Putting Joplin to Work

I used my chair at the aquarium, which is extremely handicap accessible by the way! I would be lying if I said that I didn’t feel some guilt when I would see other people in wheelchairs whom I deemed “worse off” than myself—but I also know I wouldn’t have been able to make it through the aquarium without Joplin—and my loving husband, of course.

Light headedness and slight vertigo set in a few times due to other vertigo triggers such as crowds and noise but thankfully, it all passed quickly.

The Broadway show was a little different. I had much more anxiety about the play and I had planned to use Joplin but on the day of, I didn’t feel I needed to.

Again, noise from all of the people chatting while waiting in line for entrance brought about vertigo. Thankfully, it also passed; though it was more intense and lasted longer than at the aquarium but again, I made it through.

The Wheelchair Blow Back

When I returned home, I saw a post in a support group asking about wheelchairs being used with Meniere’s disease. Some of the comments tore me to shreds.

One commenter even going as far as to say that Meniere’s doesn’t affect your legs. Another implied that if you pray enough and do balance therapy, you won’t need a chair. One commenter just posted a single GIF of a woman lifting weights. I took this to mean that if you exercise and are strong, you don’t need a chair. Chairs are for the weak.

Wow! I had never felt so judged by people in my own community! Not all of the comments were judgmental but that didn’t take the sting away from the ones that were.

I made my own post in the group about how this made me feel and why I choose to use a chair and let me tell you—the positivity I got on that post far outweighed the negativity on the other post.

I use Joplin as a tool to help me do things that would be difficult to do without it. I don’t use her all the time, but I shouldn’t have to justify the times that I do.

Chronic illness doesn’t have to end your life—you just have to come up with modifications that allow you to ENJOY your life without feeling guilty for doing so. I am not ashamed of Joplin and if other people think I should be, then that is their problem. I only have one life and I am not going to live it on the side lines any longer.

For those making judgmental comments about another chronic illness warrior’s use of a chair, walker, hearing aid, electric scooter, etc.: You are no different from those who say things like “but you don’t look sick.”

Don’t be that person. The chronic illness community hates that person!

C

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