Sunday night was…weird. I went to bed early because I was feeling…weird.
Dan came to check on me. “What’s up. You doing okay?”
“Well, what’s wrong?”
“I don’t know. I just feel really strange. Like something’s squeezing me, but from the inside. Everything’s heavy. I feel like I can’t breathe.”
Dan tried to push me for clarification, but I had nothing. The sensations were new, and I couldn’t determine whether I was having some kind of panic attack or my worst flare up to date.
Am I panicking? Or am I just so weak I my muscles won’t expand enough for a solid breath?
I could tell he wasn’t sure how to help. “I’ve just been lying here trying to decide if this is worthy of an ER visit, but I don’t figure there’s much point in going if I can’t even explain what’s going on, you know?”
Spoonies learn quickly that ER visits are borderline pointless. Unless you can show the doctor a gunshot wound or… Well, it’s pretty easy to talk yourself out of going. They’re expensive as hell, and the doctor you end up with is a total crap shoot.
Like the one who gave me Mylanta and sent me home when I had a gallstone he didn’t bother to check for. That waste of my time cost me thousands of dollars and several more months of excruciating pain.
Ever since my doctor’s appointment on Friday, I’ve been getting weaker and weaker. And it’s not like I had all kinds of strength to start with. In fact, during the strength test part of the visit, she asked me to grab her fingers and squeeze them as hard as I could. I gripped the index and middle fingers of each of her hands and gave it everything I had.
I was thinking to myself, based on my perceived level of exertion, that she was going to say uncle. I pinched up my face and waited for her to tell me to let go.
Instead, she said, “No, as hard as you can.”
When I wake up in the mornings, my spasms are worse. I yawn repeatedly, and with each yawn my entire body tenses up from head to toe. The back of my right ear and earlobe are numb. My forearms and hands are mostly numb, but painfully so.
Whatever that means. How is it possible to be in pain and numb at the same time?
Talking triggers yawns, which triggers more head-to-toe spasms. Getting up from the couch—when I can manage to stand up—triggers head-to-toe spams too. I have to wait for the muscle contractions to stop.
Imagine you’re angry and making a fist. And you’re so angry that your arm and fist shakes in tight, tremor-like contractions until you let go of the fist.
That’s what I’m calling a spasm. Only it’s all over my body. And I can’t just think let go, and my body magically lets go. It’ll let go when it damn well feels like it, and there’s not a blasted thing I can do about it.
There’s no question the reality of my situation is starting to sink in. If you type the visit diagnosis items from Friday’s appointment (weakness, abnormal gait, clonus, restless leg) into my symptom checker app, you get the results I posted in the above screenshot.
Knowing what I do about my own body, I’m 99.9% certain I’m dealing with multiple sclerosis. But I can’t completely ignore that other possibility. And I’m already conditioned to fear non-answers. If the MRIs (just got them set up this morning and they are scheduled for Thursday) don’t show MS lesions or anything, what then?
Thank God for medical cannabis in Illinois. Whether Sunday night’s breathing troubles were directly related to my physical condition and spasms or my overactive, anxious mind, one quarter of a gummy helped.
In a few minutes, I felt the muscles around my chest and stomach let go. I could breathe. And then I feel asleep.