Welcome to Sharing Sunday, a series of blog posts where I intend to share a little bit of what it’s like to be a spoonie, maybe share some ideas, comfort, and understanding. So pull up your favorite cuppa and let’s “talk.”
I’m a spoonie, I suffer from one of those invisible autoimmune diseases, a fairly rare one, there’s no cure, there’s no real treatment, just deal the symptoms until they subside and wait for the next set to come on. The main symptom I fight on a regular basis in fatigue. Not “I’m tired and need a nap” fatigue, I’m talking soul crushing, every single bone, joint and muscle in your body screaming in pain fatigue. Yeah …. so having tried several medications to combat this life sucking phenomenon, I long ago gave up the standard western medical practice of “drugs and then more drugs to offset the side effects of those drugs.”
It’s late summer here and I’ve been fighting the fatigue wars for several weeks now and I’m getting, well, tired. I have broken out all of my big guns for this battle. Over the next few weeks, I’m going to share what spoonie life is like for me and some of the front line weapons I, personally, use against fatigue. This is not intended to be taken as medical advice, or advice of any sort really, it’s just how I get through the day.
Routines are important even for “high functioning” spoonies. What the heck is a “high functioning” spoonie, it’s those of us who one way or another manage to live a normal appearing life. We work, take care our children, spouses, and homes. We cook, run errands, pay bills, and blog, just like everybody else, but we do it on an energy budget. For me brain fog is atrocious in the morning and that’s where routine first comes into play. There’s no thought process, no decisions to be made, I just follow the same steps every . single . day. That’s what makes it a routine.
The first hour of my day is spent on an elaborate “rise and shine” routine. When I open my eyes, they are usually filled with grit, light is painful and just opening them hurts. Seriously, I’ve come home from a day at the beach with less grit in my shoes than what’s in my eyes every morning. This is from blepharitis and chronic aqueous deficient dry eye that are by-products of glaucoma and my autoimmune disease. I blink a lot while I do my “before your feet hit the floor” stuff and sometimes wipe my eyes with a wet cloth.
I tackle my feet first by rubbing arnica cream and/or a muscle/joint relief roller ball in the sore areas while rotating my ankles. I swallow a PPI (proton pump inhibitor) and painkillers (1 each naproxene and acetominophen), drink 8 oz. of water and use two inhalers.
I stagger (sometimes limp, occasionally crawl) to the bathroom where I wash my eyelids with a special eyelid scrub, rinse my mouth from the inhalers, gargle with warm salt water (for chronic laryngitis), wash my face, treat my face with home made wrinkle serum and eye cream (since my skin is too stinking sensitive to use anything else). Then I apply hydrating eye drops to both eyes. I waddle (see how much better I’m getting already) back into the bedroom and make the bed. A process which takes a lot longer than it should because I am still very, very stiff and sore. Every little movement hurts at this stage of the day.
At some point during this melodrama, my sweet hubby has brought me a fresh Triple Shot Americano …. ahhhh the love of a good man, who happens to be an excellent barista and owns and espresso machine. I’m 30-45 minutes and two spoons into my day and I haven’t really left the bedroom yet.
Next time I’ll delve more into spoonie mornings and some of the strategies I use to get moving. If you’re a spoonie, please paste a link to your story in the comments, I’m always interested to see how others cope.
A few links for you to peruse
Til next time ~Peace and save a spoon for tomorrow ~JPP