March 20, 2017
I often post about my bad days. It’s the way I let go of my negative feelings and come to terms with what I’m dealing with. It helps me work through my symptoms and decide what to concentrate on. When I write it down it lessens my need to talk about it, hopefully in turn diminishing the burden on my loved ones. When I write I can be honest and authentic about how tough things are.
I also have good days, and I don’t record my feelings or musings on those days. I’m generally too busy. On my good days I make the most of them. I clean, cook (both for that day and for the days when I won’t be able to), I go outside and take in the fresh air, I play with my son, I meet friends for visits and mutual support, I shop for household goods, I make phone calls and pay bills. On my good days I’m a regular human being, functioning in society, even if I still need to lay down a few times throughout the day.
Today was one such day. It’s the first day of Spring and the snow in the yard is beginning to melt and become one giant puddle. My 5 year old and I played in the water with his trucks, while also carving paths in the remaining snow for the water to drain. We met a friend of mine for breakfast and went grocery shopping. We filled the bird feeder. Once he was at school I tidied up the basement and primed the last teleport. With my extra energy I managed some self care and waxed my legs.
It’s so wonderful when I get good days. My chest still hurts and my other symptoms don’t disappear completely, but they don’t rule my day. I can choose to ignore them.
Every time I measured my heart rate today it was 80. On my bad days just doing the dishes or taking a shower raises it to 110-130. But I’ve been told I can’t have POTS because I have good days. When I asked about it the internalist said my symptoms would be bad everyday. It contradicts what I read from personal accounts online, but who am I to say? I don’t have a medical degree and personal anecdotes don’t carry any weight with doctors.
On my good days I don’t think about these things though. The great thing about being busy is that there’s no time to dwell on the questions of what I have and what can be done about it. On my good days I simply live and be. I breathe and walk. I cook and eat. Good days are gifts that I open enthusiastically every time one is given to me.