By: JANA GREENE
I need to throw a little tantrum right now. Not a full-on nervy-b, but a proper little hissy fit.
I’m so grateful for the health days lately that have allowed me to do some normalsauce stuffs recently, but Ehlers Danlos is a chronic pain and illness condition. It doesn’t take vacations.
My whole body is made up of faulty collagen. The last two nights (and eapecially today,) the pain flares had been almost unbearable.
So here Is my stupid little list of wishes, compiled to get my frustration under control, and maybe remind you that you’re not alone if you’re hurting too.
I wish I could pop my shoulders out of the sockets like Ms. Potato Head, and replace them with sturdier, less excruciating shoulder joints. They pained me so severely last night, I writhed around trying to get comfortable for several hours instead of sleeping.
I wish it didn’t feel like oyster shuckers have been wedged under my kneecaps, feeling like someone is trying to jimmy them off every day.
I wish my hips didn’t roll around and sublux levery dadgum day. I can pop the joint in and out, and it’s not a fun party trick. It’s agony.
I wish I had one of those cool new “exoskeleton” robot suits. Have you seen them?? They hold you together from the OUTSIDE. Like a Transformer. I would t even care that I looked like a weirdo.
I wish people disnt give me the stink-eye when I need to park In handicapped. Look at her, walking Into the store! What people dont realize Is that every step can be a real challenge. You never know what a disabled person is really feeling In their bodies. Sometimes the fatigue makes every step seem Impossible.
I wish people’s understood that different days require different mobility aids. Sometimes you will see me using a cane. I need it for stability on Sundays and or because the pain is making it hard to walk other days. I don’t use it at all and I know that seems really confusing, but it’s quite simple – there are good days and bad days.
I live every day fully aware that I will most likely lose mobility from here on out, so the days I don’t need my cane I revel not needing It.
I wish people understood the fragility of an EDSers body, and the strength It takes to keep going. We are fragile, but unbreakable.
There is little to no stability in my joints because most of my lax connective tissue. Pain and injury are the result. I once broke my ankle in two places from stepping out of bed to go pee in the middle of the night; it just rolled. And lest you think I’m just a big wimp about pain, I walked on that ankle for eleven days before I had it looked at by a doctor. My threshold is very high.
I wish I had a decent immune system. I don’t.
I wish the migraines would cease and desist, but they are tied into some of my other genetic mutation conditions. They are a whole other Issue altogether.
And I wish I were way more zen about pain. It teaches me things, true. But I simply get tired of this shit. I am trying to live transcendently – find joy beyond suffering and camp out In the assurance that God’s got me (and I get by with a LOT of help from my friends.)
I currently have a post-it scrawled with medical appointments I need to make on my kitchen counter. Like I NEED to make these appointments – for specialists, physical therapy, another cortisone shot in my knee, major dental work, a trip to Duke next month for gastroperesis treatment, and labs galore. It had been on the counter for weeks and every day I pass it and get a mini-panic attack, on account of I’m simply overwhelmed.
Because this IS overwhelming. My job is to stay healthy enough to have a quality of life, but I sure could use some PTO days to just NOT feel like this.
Life is challenging, but we are never alone. That’s important to wish for – for God to use my crappy conditions to make others feel less alone. That’s the best reason I can come up with for any kind of suffering.
In our suffering, let’s lean into one another.
Bless us, everyone.
Words by Jana Greene 