Friday, August 19, 2011

Tired of Being Misunderstood

As if living with these illnesses isn’t hard enough, we also have to deal with the misconceptions that go along with them. 

For the first few years after my diagnosis, I hardly mentioned my illness to anyone. During college I found I had taken on more than I could handle, and so I began mentioning my illness to professors and others who needed to know what was going on. Doing so made me realize how misinformed people are. 

I quickly learned I had to explain my illness to anyone I mentioned it to. Few people were familiar with it. Those who were either had a relative with fibromyalgia or had seen “that episode” of The Golden Girls (a two part episode called “Sick and Tired,” in which one of the main characters, Dorothy, is diagnosed with chronic fatigue syndrome after a struggle for a diagnosis). 

Trying to explain these illnesses or counter misconceptions was exhausting. Most responses were along the lines of “What’s that?” or “Oh, would you like me to get you a cup of coffee?” A few people have even confused my illness with narcolepsy. 

I’d constantly be told to go home and get some sleep; I found it aggravating because I knew sleeping wouldn’t make me feel any less tired and I didn’t want to sleep my life away. It seemed like no matter how many times I explained that to people, they still ended up telling me to go get some rest.

Mentions of pain were followed by offers of Tylenol. Did people honestly think that I’d complain about pain if a simple over-the-counter pain reliever alleviated it?

Even worse is dealing with doctors. They have told me everything from I’m just depressed to I just need to exercise. Others have sent me to the emergency room because of all the symptoms I have.

One time, I was sent to the emergency room because my pain that day happened to be in my chest and, as usual, I had numbness and tingling in my arms. The emergency room doctor asked if I was experiencing any fatigue, and to make sure he understood that wasn’t unusual for me, I mentioned my illness. He looked at me and asked, “And just who diagnosed you with that?” I could tell by the way he said it that he thought I was a hypochondriac. After the test results came back, the doctor told me that the pain was probably nothing, but if it got worse to make an appointment with a cardiologist. 

We also have to deal with a lack of respect. We don’t look sick, so people assume it can’t be that bad. Additionally, everyone gets tired, and those who are overworked certainly feel exhausted all the time. Everyone has also dealt with pain to some degree, as well as many other of the symptoms we have. What they don’t understand is the severity and the fact that it doesn’t go away. Not only is the fatigue so bad that even sitting up can be difficult, but there are also the rest of the symptoms that come, go, and vary constantly.

I have come to accept that some people will never understand these illnesses. I do my best to educate those who are willing to learn about them, while trying not to be bothered by those who don’t get it.

On a positive note, awareness is slowly improving. Just in the past few years I have noticed a difference in the amount of people who have at least heard of these illnesses. Most people still need to be filled in on what exactly they are, but it’s a start. 

What is the most frustrating thing anyone has ever said to you?

Sunday, August 7, 2011

My Exercise Routine

I recently came across a forum topic asking about exercise thresholds and how much others who are ill could manage.  The members of the forum have various illnesses and levels of severity, so this was a perfectly good question.  The person who posted the question shared the number of sets of various exercises such as pushups that he was able to handle.

I use a lot of humor to cope with my illness, so I could not help myself and posted the following response:
My exercise threshold is pretty low.  Just standing up for a little bit or doing something as simple as brushing my teeth puts my heart rate over my anaerobic threshold.  I wear my heart rate monitor all day.
So, pretty much just for kicks, here is my exercise routine:
- 4 sets of pulling myself out of bed
- 12 sets of opening the refrigerator
- 8 sets of lifting the water jug to pour myself a glass of water
- 1-2 sets of opening childproof medication bottle
- undisclosed number of sets walking to the bathroom
- 2 sets of brushing my teeth
- 12 sets of walking to the kitchen
- 4 sets of eating
- 1 set of showering (on a good day)
Obviously with the various degrees of these types of illnesses, one person may able to do a decent amount of carefully paced exercise while others cannot do any. While we don't want to become deconditioned, we can only do what our bodies allow.  In my case, the list above is all I can generally manage these days without causing a crash.

I am sure we have all been asked what we do for exercise by at least one doctor who thinks exercise is the cure-all for all that ails us. How do you answer the question?