Friday, April 12, 2019

The Reality of Chronic Illness

Last night I spent my birthday at the Bruins game with my brother. Anyone that knows me knows that there is quite literally no place I would rather be than at the Garden watching my favorite team play. To be able to do so on my birthday was even more special (even though they didn't play well and lost).

However, the game last night was just another reminder that I pay for almost everything I do. For me that involves increased pain and debilitating fatigue. Sometimes it means a setback in other aspects of my health as well (which may present several days later). It's just the reality of chronic illness.

So why do I still do it? Because it beats the hell out of spending everyday doing nothing (out of fear of a setback or an increase in symptoms) and wasting my life away. Life is happening right now, and there are no guarantees. With a progressive disorder, I can't simply wait for my health to improve before I live my life. In reality, my health likely will never improve all that much. My baseline or "normal" changes regularly but generally trends in the wrong direction.

It can be difficult to find a balance of when to push yourself and when to take a step back and let yourself rest. Sometimes I do have to say "no" or cancel plans last minute. However, if you are passionate about something and realize that there will be consequences later, you find a way to make it work. Sometimes that means utilizing resources that will make it a little bit easier. For me that means using my wheelchair, parking as close as possible (handicapped parking), and asking for help when necessary (which I must admit I am terrible at doing). It's part of accepting life with chronic illness. But at the end of the day, we are only given one life. It's now or never.

Win or Lose...I love my Bruins!
Today I spent the day resting so that I can get back out there on Saturday to cheer on my favorite team. Time to even up the series! Let's go Bruins!

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