When healing takes forever

Brain juice leaks are a real pain in the neck. Literally.

You know that feeling when you think you’ve recovered from an illness or injury, and then all of a sudden you projectile vomit? That’s how I felt two weeks ago when I stood up and realized my headache was gone. Hooray, no more bedrest! I leaped around my condo tackling all the things I hadn’t been able to do. Less than ten minutes later, a web of pain shot up my neck and into my skull. I paused, rolled my neck, yelped, and puked.

Although the CSF leak had healed, the injury severely strained the right side of my neck. Searing pain sent me back to bed. I cursed my luck – I can accept a sports injury, but a muscle strain while on bedrest?!

I know I should be grateful that I am healing, but honestly, I feel empty and trapped. I’ve mastered the Zen of kidney stones and anaphylaxis, but 38 days of pain and isolation are wearing on me.

Some people are graceful about pain and bedrest. Good for them. I turn into a monster. Constant pain induces desperation and bedrest invites me to ruminate about my mortality. Books and movies are temporary distractions at best. Nothing brings me joy, not even prednisone. I tried practicing gratitude, but acknowledging “at least I’m not a giraffe” did not make me feel better.

Over the last few years, I’ve learned three things about my shitty feelings:

  • Pain and mast cell reactions can induce shitty feelings.
  • Fighting shitty feelings is futile.
  • Shitty feelings are temporary.

I know this pain and these feelings will go away, even though it’s hard to be patient with recovery when I’ve already faced a shitstorm of health issues. So tonight, I will pop my muscle relaxant, wrap myself in a blanket, and embrace my shitty feelings.

“Simply be present with your own shifting energies and with the unpredictability of life as it unfolds.” – Pema Chödrön

“Acknowledge your shitty feelings when shitty things happen.” – Hell’s Bells and Mast Cells

P.S. Pain also makes me swear more. Not sorry. It’s a natural form of pain relief.

In the Hall of the Mast Cell Queen

A narrow path of light gleams on the red marble tile, inviting me into the hall. I pass seven pairs of large, oak doors guarding both sides of the corridor. At the 15th door, I look over my shoulder. The hall is silent except for my steady breath. I unlock the door, enter the room, and wait for the click of the latch behind me.

The room is small and plain: white walls, dark carpet, and no windows. A desk consumes the majority of the space. They say I will be safe in here, but they don’t fully understand. I set to work anyway. Work is my reprieve these days. When I can focus, I can forget my loneliness, and my curse.

At first, I had hoped I just needed more sleep. When that didn’t help, I tried positive self-talk, but my heart pounded so furiously I could no longer hear my thoughts. Anxiety, the doctors suggested at first. However, the more I shared, the more uneasy the doctors became. They told me they could not help me. They did not believe me. I knew better than to tell them everything.

Shadows pass along the ½ inch gap between the red marble tile and the large, oak door. I am not alone in the building anymore. I wonder if I should seal the gap to protect myself. They don’t mean to harm me, I am told, but I know they will if let them get too close.

Before the curse, I walked the building freely at all hours, unaware of the dangers floating through the hall. Perhaps, if someone had warned me, I could have avoided it. Perhaps, someone did warn me, and I didn’t believe them.

Another shadow glides along the gap and stops. Three raps against the oak door jolt me out of my chair. There’s no way to know what is waiting for me on the other side, but I must answer. I slowly open the door a few inches and peer into the corridor. A familiar face, a safe one, smiles and asks, “How are you?”

As I push the door further open to invite my visitor in, a draft cuts into my room. At first it is sweet, like a rose, but then it burns as tunnels down my throat. I back away, but it wraps around me like a snake, crushing my chest. With every gasp for fresh air, the poison travels deeper into body.

The smiling face, unaware of the danger lurking behind them, notices my alarm. Clutching my throat, I declare my curse, “I smell living people.”

Happy Halloween!

MCAS Crossword Challenge

My grandma was the first chronically ill person I ever met. She suffered from emphysema and was confined to a couch and bed for the last 7 years of her life. I slept over at her house often. She was desperate for company, and I, less than nine years old, was desperate for attention. We were best friends.

At night, we’d share a full-sized bed and recite the Lord’s Prayer together. “Amen,” she would say as she pulled the covers over my head.

And then she’d fart. Purposefully. You can guess where I got my sense of humor.

Although grandma’s body was failing, her mind was sharp. She spent her days watching “Murder, She Wrote”, playing handheld electronic poker, and completing crossword puzzles.

I can’t imagine seven years of confinement WITHOUT INTERNET. (It was a big deal when she got a cordless phone.) I wish I could ask her how she kept her sanity. Did she really like crosswords or did she just need to keep her mind busy?

Yesterday, I created a crossword puzzle. I don’t even like crosswords. Of course, I’m also terrible at them. However, I needed something to do, something to distract me from feeling sorry for myself for missing out on summer.

Sometimes, we just need to keep busy. So here’s a crossword puzzle for you to enjoy:

Hell’s Bells and Mast Cells Crossword Challenge

…unless you don’t have mast cell disease. Then you won’t enjoy it, because it’s full of ridiculous MCAS terms that no average person should know.

If you complete the crossword, please let me know in the comments below!