Our son has been sick for the better part of a week now (flu-like symptoms; nothing serious) and often mentions how bad he feels, how he wants to get better, and how he can’t do much. He lies around a lot and when he’s up, he walks around droopy, pasty, and lethargic. It all sounds a bit like my own life, I will say!
However, although I certainly still have my share of walking around droopy and telling my family I feel bad, I realized I have gained some confidence, too. Although I have not gotten way, WAY better, I am getting kind of used to being sick and am definitely better at making decisions that enable me to maximize my days and doings.
I know, now, that on a good day, I can mop a section of the kitchen floor before sitting to rest in the family room for a while until I do the next one. I know now that I can probably chat perkily for a while at a party if I make sure I’m seated and am drinking a glass of salt water. I know to rest before certain big events and avoid other ones altogether.
I’m also cautious about certain things: I’m still gunshy about walking the entirety of our church, because I’ve gotten too close to presyncope too many times. I’m still hesitant to give my son a buzzcut while I’m standing, because I grow too lightheaded. I’m still careful to have a stool in the kitchen so I can sit down at a moment’s notice while prepping meals.
I have made progress in adapting to my altered lifestyle with a chronic illness; however, I would like to understand more about how to live with POTS and NCS. I mentioned that we are considering having me go to a three-week program at the Mayo Clinic for people like me who have autonomic dysfunction. Today, I will undergo the last local medical tests needed for Mayo’s evaluation of all my records, then I should hear in a couple weeks whether they will accept me as a patient. I’ll keep you posted!
Have you had to adapt to a very different life than you thought you’d have? How have you done that?