Sometimes as a middle-aged woman, it’s hard to admit you need help. I don’t know what it is about us if it’s an ingrained struggle to be strong and independent, or maybe a fear of disapproving stares that keeps us from using the very things we need to function! I battle every day with Lupus and dysautonomia, and I fight just as hard with my foolish pride too! A couple of weeks ago I was shopping with my DH, and it happened to be a particularly rough day for me. I came close to fainting several times before I went to the front and retrieved an electric cart. While it was definitely far safer for me to be sitting, it was still hard to see the way people looked at me.
What a frustrating dichotomy we live in!!!! I spend so much effort trying to hide my Lupus from the world, and I work daily to be healthier and overcome my illnesses, and yet here I am secretly wanting to have a neon sign above my head listing every damn reason I have to be sitting on that scooter!!!! And also possibly some profanity in there for good measure.
Also on my shopping adventure, I picked up a shower seat because taking a warm shower can sometimes be enough to wipe me out for an entire day! I have had a couple ”controlled falls” as I refer to them in the past because the heat and humidity are a vasodilator. Having both POTs and OH manifestations this is a recipe for disaster!! For the record, my DH isn’t at all fond of my term ”controlled fall.” He feels it diminishes the fact that I frequently come close to passing out in the glass shower enclosure which clearly spells certain death to him! In all fairness, I manage to slide down the wall and sit before I ACTUALLY pass out so I’m fine. But try telling that to him while he’s gesturing to my EP cardiologist some sort of hidden code for “see the shit I have to deal with here??” Don’t worry though most of our doctor’s appointments involve a good hearty facepalm or two. Hellooooo stubbornness and foolish pride!! Anyways I finally got around to swallowing my bitter overgrown pride and put the seat in the shower yesterday. WHY THE F- DID I WAIT THIS LONG!! Besides the fact that I was able to shower and actually had energy left afterward, it felt super luxurious to sit down and shave my legs without playing shower yoga with razor blades!! Again why have I waited this long, and why isn’t this just a standard shower thing?!?! The rest of the world does not know what they’re missing!!! In all honesty, the only people who would notice my shower seat are people who come to visit and they already know what’s going on with my health. Unless some random person wanders into my bathroom which I assure the last of my concerns would be them judging my shower chair, I’m pretty safe.
At the end of the day, yes I’m sick, no it doesn’t always show on my face, but there isn’t a day my body lets me forget. So until they invent a cure and manage to fix my nervous system, I’m gonna rock my purple cane, and park in my handicap spot when I need it and use the cart on those crappy days!! And if you give me a dirty look I just may accidentally run over your heels or smack you with my cane!! Because when a spoonie runs out of spoons all they have left are knives and you ought to run!