My son is about to leave for his busy summer of camps, mountains, and road trips. All together, he will be gone for six weeks, so we really wanted to make these past few days special. We made family plans to go to dinner and then go do something fun Friday night. Today, Saturday, we planned to run errands separately and relax before a long drive tomorrow.
My brain had other ideas. Friday was a level 10 pain day. Today hasn’t been much better.
I’ve been in the 8-10 pain range solidly for the past 6 months. I’m more than used to moving things around on the calendar because getting out of bed isn’t an option from one day to the next. However, I really wanted to spend some enjoyable quality time with the boy.
Rescheduling and cancelling plans is always disheartening. I cry a little nearly every time. It alienates friends and family, and, honestly, for long stretches of time it even feels easier to avoid making plans at all. I always hurt. It’s just a given these days. I do my best to hide it when I can get out and pretend to be human, but I spend most of every day in bed dreading the preparation it takes to put my human mask on. Letting the pain “win” isn’t a way to live, however.
Friday night my husband made frozen pizza for us for dinner and I did a DHE injection. Today, a level 8 day, we beat the pain by finishing up my son’s camp shopping as a family. Then, instead of going to a special dinner out somewhere, we got take out. We also got toppings and ice cream to make sundaes and watched a television show we always watch together. Dinner and dessert at home is much less impact on me, and we still spent some good time together.
I could have spent the weekend being bummed about how much I hurt and how it took my time away from us… but instead we took the time back and made the most of it.
And that is how you live around pain…
… you make the most of it.