Bathe, cut, feed, brush...

 I've not fared well since the beginning of October. The fatigue, the utter fatigue. 

There's a song with the line: "cause you had a bad day...." I don't know what the song is about, but that one line makes me think of folks who have an occasional bad day. When I heard the song last week, I chuckled and thought, My line would be, "you had a good day..." simply because my "good" days are rare, without a perspective shift. And yes, I'm well aware that "good" and "bad" are relative adjectives. 

I do my fucking best to stay thankful and find gratitude in the smallest of things. So, any critics and folks who want to give a "change-your-outlook" spiel, shut-up; that's how I feel right now.  

I feel that very few people really understand what it is like to live with such deadening fatigue. It's like my body is not getting its juice, and perhaps it's not. Perhaps my adrenal function has become so suppressed, that...well...it just doesn't have the juice. I wondered yesterday, If and when I get another MRI, I wonder how shrunken my adrenal glands will be?

I no longer have the severe heaviness that I once dragged around, which was also hard to describe. I no longer live with knots that move around on my wrists and hands, or with the feeling of heavy sand moving like mercury in my forearms. I no longer have the inability to make a fist with each hand. And I've had strength enough to cut my own fingernails since the beginning of 2019, or was it 2020? I've been able to lift my arms all year long, every year, since 2017. I could list other symptoms that have improved and even disappeared since the end of 2016. Such bizarre symptoms they were. Some symptoms are still odd, like the tenderness on the crown of my head that radiates outward. That started sometime after 2016, but I don't know when. I still have dizziness regularly. Tender palms and soles. Digestive issues. Shortness of breath. Weakness. Cognitive dysfunction. And the overwhelming fatigue. Most nights I sleep sitting up, due to stomach issues - one of the gifts of steroids. 

Where am I going with all this? 

My mind and thoughts and feelings swirl. I want to convey to any readers the overwhelmingness of it all. The day-in, day-out, 24/7, struggle. I want to be heard, not advised. I want to be seen...

Today, my goals are...to bathe and cut my nails. That's it. (My last bath was last Thursday; confessions of the chronically fatigued.) Other than bathe and cut, I'll feed myself and take my supplements and meds (which I take 5 times a day, every day). Every day, I chart how much prednisone I take so I know how to titrate up and down. I make notes as to any activities I may have done that day and how I'm faring. I've done this for almost a decade. 

I've also read today and will read some more. I've already napped. It's 4:55 PM. I'll get my teeth brushed at some point. Tonight, I may watch more CSI Miami reruns. My new motto is, "What would Horatio do?" 

I've not been able to cycle much lately, inside or outside. Outside, it's hard due to the cold. And my big toes are becoming numb more often than they used to. After all, I do have nerve damage, and I live with pain, a mostly low-level ubiquitous pain. 

In my head, I can hear the critics. Aw Carol. You have a husband and a house and food and clothing. You get a disability check. You don't have anything to complain about. You should be thankful for all that. You aren't a single mom or have a partner that beats you or berates you. Your material needs are met. You can drive and ride a bike. So shut up. You have no idea what it's like to really suffer. 

Okay....