Does anyone else have crazy debilitating fatigue and then bursts of energy when you try to catch up on all the chores you missed along the way?
I sure do. When it's a bad flare, I can be in bed for days feeling guilty about all I need to do. Then when my energy finally returns, I am a whirlwind trying to catch up. Of course, there is never any total catching up on my chores and "to do lists" because even when I am not in a huge flare up, I get afternoon exhaustion where I accomplish pretty much nothing (from noon or 2:00 p.m. on).
I think about video games where the character has an energy bar over head. If I use too much energy early on, I'm shot for the rest of the day. If I do too much in one day, then I'm in bed the next day. Then there are flare-ups that last for days or weeks where climbing the stairs, taking a shower, or putting on makeup uses up 50% of my energy for the day. On those days, dishes and a load of laundry are all I get to. That's not enough when there are 5 of us (me, my dear husband, and three children). Therefore, I have the dreaded piles. Piles of laundry. Piles of clutter. Piles of "to do's". And piles of to be put away.
When I have those bouts of energy, I do as much as I can to tackle a pile or two -- but there is never enough energy. In addition, when I can't get out of bed, a child will say to me "but mom, you're always tired." And I am afraid for the most part that is true.
But on the days and mornings where I feel like my old self, I try to squeeze in as much fun with the kids as I can. Biking (slow and short route of course), strolling in a park, dancing and spinning our five year old in a store line, and going to the grocery store and going up every aisle. Most trips to the grocery store, I skip many aisles because that steals energy that could be used for other things. Therefore, it's a special occasion when we take our time and go up every aisle.
When I'm starting to fade (feel exhausted), I automatically go into power saver mode. Nothing gets done, but the essentials. Does anyone else have this? The energy saver mode? The piles and messy house or office? The bouts of fatigue followed by energy where one tries to catch up? And what are your energy saving habits?
All the while, I look healthy so friends say "but you look so healthy". Of course, if I wasn't wearing makeup to cover the dark butterfly rash (malar rash) on my face, they might not say that. And of course, for the outings I make, it's at times where I have energy or where I stayed in bed all morning so that I can have the energy for the event. People don't realize what's going on behind the scene so that there is a pretense of normalcy. 99.9% of my friends don't know because they won't understand. How can they understand if they have never gone through it?
That said, my friends would all say that I am extremely happy and content. My husband jokes that I have the happy gene. That is true. I also have the giddy gene (which I understand can be a symptom of Hughes Syndrome). I feel blessed in so many ways and I am thankful. When I have energy, I chose to dance and have fun over just catching up on chores. If I didn't have the fun, I believe I would be very depressed. I'm trying out for a local theater production of Anything Goes next Sunday as a tap dancer. It's silly, but I am having so much fun practicing. Even if I don't get in, the neuroplasticity of working the brain and forming new connections must be beneficial.
Sorry for the long ramble. Time for Sunday morning dishes. I hope you have extra energy bars added to your supply this morning. Have a great Sunday!