In the early stages I detested the amount of time wasted in bed suffering from extra pain. I say extra because I haven’t experienced a pain free day in over 12 years. I would fret about all that needed to be done, what was still waiting for me to do, and all the things that I wanted to do. I would drive myself crazy, to the point that when my pain finally decreased to a level I thought was acceptable, I would attack my list like a mad woman. This would just knock me back down and in a few days I would do it all over again. It was an ugly vicious cycle. Hopefully it didn’t or doesn’t take you as long as it did me, but it took me 11 years to finally learn how to relax and enjoy my downtime and to not worry about what is not getting done. My days of playing catch up are over. Life is too short to spend all of my “good” hours and days tending to or worrying about what household chore is being neglected. Over the past year I have learned to embrace my down days. Sooner or later the chores will get done.
Will my house be immaculate? No, I will always have dust bunnies and some dirty dishes hanging around, but I don’t care. If I were to spend all my “good” days focused on my list I would never have any quality or fun time with my family. So the dishes sit in the sink, it more important for me to have a day at Disneyland creating memories with my family. Currently I am riding out a severe flare and wrote this because this morning I realized how relaxed my attitude has gotten regarding how long a flare lasts and that I stopped worrying about catching up afterwards. My house is not pristine nor is it a pig sty, it’s lived in by someone who values time spent with family more than having floors so clean that you need to wear sunglasses to avoid the glare.
In the past I would start tackling my to do list as soon as my pain began to decrease, no matter how little that amount was. But this would only make things worse and would extend my down time. Now I wait…. Obviously I can’t wait to be pain free, but I have learned to listen to my body and how to recognize when it’s ready to resume “normal” activities.
My down time is spent watching movie and TV series marathons via Netflix and Hulu. I spend more time socializing online during this time as well. My family has learned to treat my bedroom as the family room during long flares, keeping us connected and not leaving me feeling like I am lost on a deserted island.
In the past I spent my good days trying to keep up with the world while catching up on housework and other tasks. Of course I would be down for the count long before I made a noticeable dent in my list. This caused me unnecessary stress and to be a cranky witch. Currently my goals after a severe flare is to tackle ONE item on my to do list, do something fun with my family, and to do other activities that bring me and my family joy while I can physically handle it. I used to worry about having friends or family seeing dust on my entertainment center and dishes in the sink if they were to drop by unannounced. No more, if it really bothers someone that drops by they are welcome to wash my dishes, dust, mop, etc… Basically I have accepted that my conditions are never going away, and that if I want to enjoy life I need to let go of the dream of being the perfect housewife, stop comparing myself to others, and HAVE FUN.
My advice to you? Relax! Don’t try to be a Super Hero! Be you! Find what gives you joy during your down time and during the days that aren’t so bad.
Till next time,