I think my
middle name is officially going to change to “Party Pooper”! I seem to cancel last
minute on most of the events that I commit to. I’m sure anyone with chronic
pain/ diseases understands this part. It is a hard topic though. Because explaining
yourself to people every time you cancel never gets easy. The guilt! Oh! the
guilt! And sometimes, just the wish that you could make it to your dates/
events/ commitments without much thought.
not that simple. The thing is, I always plan to attend when I make the
arrangement, but every day is different. A surprise even! LOL😊
I never know how the
pain will be that day until it comes. So, despite the sincere desire to show
up, sometimes I simply can’t. And this is hard for people to understand,
because they think, “why not just take painkillers, or try harder!?”.
thing, when you have chronic pain/ diseases, you are on painkillers every day! And
that is just to dial down the pain, then you spend the day bearing the rest of
the pain. It never really goes. Even on days when you see us energetic and
smiling, we are in pain! Hence, when we say we can’t show up, it means that
even high doses of painkillers are not working on that day. And if they
eventually dial down the pain, there is an overwhelming fatigue that follows
the pain. The bottom line is, it’s an extremely long day that requires all our
energy and there is no energy left to even hold a conversation, which makes
social situations quite impossible.
What I would
like people with ‘normal’ days to understand is that when we say we can’t make
it, be more understanding, even if it does not make sense to you, give us
benefit of doubt. We are not just refusing to show up, we really, physically
can’t. And we do not enjoy missing out on stuff. We envy that you can
experience life the way you do!