Tuesday, May 10, 2016

A better understanding about life with dystonia...Written by guest Blogger Tom Seaman

Unless you live with dystonia (or any other chronic condition), it is very hard to understand the physical, mental, and emotional pain. For some people, dystonia permeates every single part of their lives, demanding so much of their attention that it can be the only thing they think about. Their symptoms never stop long enough for them to get a break.

This is very hard to comprehend for a lot of people. It certainly was for me until I developed dystonia over 15 years ago. Prior to dystonia, life was easy. Dystonia has challenged me like nothing ever before and given me new perspective about many things.

My hope is that this video and article will give others a different perspective and understanding by learning what dystonia feels like and how it affects the way we live. This is so important because better understanding fosters happier, healthier relationships.

As you can see in this video that describes what dystonia is and how it feels, it is not a fun disorder to live with by any stretch of the imagination. Take one of the examples I give about a charley horse. Imagine what your life would be like if you had a charley horse that never went away. It is almost unfathomable, but this is what dystonia feels like for so many of us. Is it any wonder some of us may not be the same person we were before dystonia entered our lives? Chronic pain can change everything.

Many of us have had to completely rearrange our lives to suit the demands of this disorder. We know that this is not easy on you either, so we want to help you understand us as well as possible so we don’t miss out on all the fun times that can still be had.

If you could live in our shoes for just one day, this is what I believe you will learn about life with dystonia and most every other chronic illness:

We are still worthwhile human beings. We still want to enjoy work, family, friends and leisure activities, but feel stuck inside a body over which we have little to no control, keeping some of that out of reach. Doctor’s appointments, treatments, medications, the rest needed to function, anger, worry, frustration, and fear are part of our everyday lives.

Making plans is often uncomfortable because we may not be feeling up to following through. Sometimes driving is difficult. We have also become sensitive to certain stimuli, such as bright lights, noises, crowds, and certain smells, so we carefully pick and choose our activities.

We may not know how well we will feel each day, let alone hour to hour some days. There are days when we can do more than other days, but just because we did something one day doesn’t mean we can do it again the next.

It’s frustrating dealing with people’s expectation that we get better faster, get over it already and act as though we are cured when our physical symptoms are unseen or after we get a treatment, most of which just mask our symptoms at best. We ask for your patience.

When we say we are fine, it doesn’t mean we aren’t experiencing pain or discomfort. Sometimes words are not adequate to describe how we are feeling. We attempt to hide our symptoms to avoid being a bother and to try and forget. We desperately want to feel “normal.”

The kind of pain we experience has forced us to adopt coping mechanisms that don’t necessarily reflect our real level of discomfort. When we say we are in pain, it’s often worse than usual; much of the time we are just coping and trying to sound happy and look normal.

“Getting out and doing things” doesn’t make the pain vanish and can sometimes worsen our symptoms. If we were capable of “getting on with things,” we would. We are constantly striving to improve and do the right things to manage our symptoms so we can get out and do things more.

Sometimes we hear others say, “You just need to push yourself more; try harder.” It may be hard to read how we feel on our face or in our body language, but we push ourselves all the time - sometimes too much and we pay for it later with worse symptoms. Finding balance is one of our greatest challenges. Some days we do nothing but push just to get through the day.

Each day has to be taken as it comes. We have to mentally prepare and carefully consider if an activity is going to cause more symptoms. This can lead to a great deal of fear and anxiety because we never really know how much our body is going to cooperate. “Making a day of things” means something different to us than it once did.

It’s hard for us to sit on the sidelines and we feel deprived when people stop asking us to join in activities. When we are physically and mentally able, we will always say “yes,” so please give us that opportunity.

If listening to the details of our condition makes you uncomfortable for a short while, consider this: what is your short-term discomfort of lending an ear compared to the long-term, chronic discomfort of a friend or loved one? Talking about dystonia is one of our most important coping tools. Denying us this survival mechanism makes a hard day even harder, but bringing it up on our own has become tiring. However, we rarely exhaust of answering questions. We love it when someone takes the time to ask about our condition. Efforts to understand makes us feel valued.

This is just a short list of things that many of us with dystonia live with daily. Since you can’t actually live in our body for a day to see what it feels like, I hope this video and article helps you better understand how we feel physically, mentally, and emotionally, and why we live the way we do. Dystonia is sometimes difficult for even us to understand, so let’s work together to figure things out and make the very best of our lives!

Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey). 

To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @dystoniabook1.