The Scariest Costume: Severe ME
This halloween I'm going as severe ME because it's fucking terrifying.
Here is the horror story that was my yesterday.
Woke up and felt like I have been poisoned with cyanide as I already had a massive shortage of ATP in my body. Short of breath and skin prickling and itching from MCAS as it is currently pollen season. Migraine already kicked in at a 5/10, its lowest level as it will only increase all day from the moment I open my eyes. Slightly nauseous and dizzy.
A few hours after waking, I realize I missed some of my medications. The adrenaline dump causes a surge of cold anxiety through my body, my skin flushes, and my throat tights up. My lips and mouth tingle and burn. I take my meds and attempt to meditate through it. But it worsens my migraine significantly.
A bit later a cluster headache hits. The pain like being shot in the head struggling still muddied and clouded by my now throbbing migraine. Breathing pure oxygen, slowly helps the cluster but can't clear the migraine. The hissing of the gas canister sharp like a saw blade. Tears flow from my eyes. Not sure whether they are from the severe pain or a side effect of the cluster headache as I am too disociated to tell.
I manage a bit of mindless shorts. Trying to ignore the joint pain and neuropathy that constantly burns and stabs. Watching real videos and content is too taxing.
Eventually, my heart rate monitor has had enough. No matter how much deep breathing and biofeedback my body is done. Time for bed. Zopiderm, CBD, doxepin, melatonin, and more all taken together eventually beat the painsomnia so I can do it all over tomorrow.
Oh and I didn't mention the bedpans, the limited diet, the port-a-cath and massive pile of meds necessary to let me have this level of function, or the mental pain of losing my career, hobbies, special interests, social life, mobility, independence, and more.
You are not abled. You are temporarily enabled. All of us will one day become disabled. And if you ignore long covid and the risk of post viral illness it could happen sooner than you think.
Are you scared yet? Happy Halloween!
