Keeping the Good Days Good

GoodDaysGraphic

Last Thursday my blog post was about recognizing some “perks” of having a chronic illness. Perks is in quotation marks because I know first hand having a chronic illness totally sucks and there is nothing truly good about having to deal with one. This was just me finding the silver lining and discussing some positive things having a chronic illness has brought into my life or made me realize. Among other things, I discussed the pros of having a handicap parking placard (which is confusing since I wrote an entire blog post about how we are NOT “lucky” to have the placard). At the end of this pro, I said even on the rare days I am feeling good, I still have my parking placard.

Some people got upset with me for this, saying I should not be using my handicap placard if I am feeling good that day, or as one person put it, when I “know I don’t need it”. I would like to clear up the confusion this statement caused.

Unfortunately for me, I am a spoonie. There is never a time when I simply “don’t need” my parking placard, even when I am having a good day. Why? Because I have to keep my good days good. We identify ourselves with the spoon theory, because we only have a certain number of spoons to spend every day. So if I am having a good day, that probably means I have an extra spoon or two. If I don’t use my placard that day, the extra distance I’m walking is using up those spoons! By the time I get into the building, get what I came for, and then walk all the way back to my car, it’s no longer a good day!

Maybe it’s the definition of “good day” that has got people confused. A good day for me means my pain is at a 5 or below and that I’m not falling asleep wherever I am. My energy level is an extremely delicate balance. I’ve become used to carefully balancing my scales, but walking an extra distance could drastically tip the scales!

If you still aren’t with me, try imagining this: you are in pain. You have burning, aching, electrical pain that hasn’t stopped, even for a moment, in years. Today you hurt less than usual. This motivates you to complete the relatively tiring task of getting dressed, doing your hair, and putting on makeup. Now that “you don’t look sick”, you feel comfortable going to the grocery store to pick up a few things. It’s summer, so it’s hot, and don’t forget you are still in pain! By the time you arrive at the store, you are tired, in more pain than when you left, but miraculously you still have enough energy to go in and pick up that milk you really need. This is your “good day”. How would you feel if someone told you it was immoral to use your handicap placard today because, according to them, you are feeling well enough not to use it?

Basically, just remember that you have no idea what is going on in another person’s life. Even if you have a chronic illness yourself, you don’t know what someone else’s “good day” might be like. Let’s be respectful of each others struggles. Even when I can’t empathize with a fellow spoonie, I try to sympathize. Because even if I don’t understand his or her specific struggle, I do understand that being sick all of the time is a terrible drain on a person’s life. A drain that can be nearly impossible to overcome.

More than anything, my feelings were hurt by these comments. But I have received so much love and support from the spoonie community, so that’s what I am going to choose to focus on here. Thank you to those who are always willing to lend an ear, share some supportive words, or just say, “I understand”. It is always appreciated.

Wishing you all extra spoons so you can have a “good day” too!

Sincerely,

Jaelin

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