I know my disease is confusing for other people. If I can go hit tennis balls then how can I say that I am sick or that I suffer, right? If I’m so sick or suffer so much, how do I manage to get the dogs walked, keep the house clean and take care of my family, right? I get it. I really do. It’s confusing to an outsider…someone unfamiliar with a disagreeable body.
People who are confused by these things are simply people who have never had to pick and choose where to put their limited energy. They are people who don’t have the problem of having limited energy to begin with and they don’t experience daily pain. The people who ask these questions and don’t understand, are people who have never been sick.
I used to be one of these people. I didn’t understand either. I hope that I wasn’t terribly judgmental, but I probably was. Most people who haven’t experienced life with an invisible illness are. You just can’t understand this until you experience it.
The reason I can hit tennis balls sometimes is because I choose to render myself useless the rest of the day. I am home in the secure comfort of my house privately aching and anguishing alone. You don’t see that part. You don’t realize that if I make a choice to hit tennis balls then I am also making a choice that that will be all I do for the day. So, sometimes I choose an hour of pure joy on the tennis court for 23 hours of nothing.
Getting the house clean doesn’t take me hours, it takes me days and lists so I don’t forget what I am doing. Other chores require frequent and admittedly annoying but necessary reminders from my spouse. On top of all my hidden pain, I also forget things now.
Taking the dogs for a walk requires an hour’s break on the couch before I can do anything else. Same with grocery shopping or lunch out with a friend. Simple things leave me utterly drained. Much like a parking meter, my energy is time limited and I am often running out of coins to put in the machine.
Maybe you still don’t quite understand and maybe you don’t need to but hopefully this clears up the confusion enough so that at least you can accept it when I say that I am wiped out.