Big, scary words

Questioning my new normal

Reading time is about 6 minutes.

Photo by Vladislav Muslakov on Unsplash

“I don’t know what kind of support I need, but I need it.”

This is a sentence I wrote in a previous newsletter about how to help parents better and I find myself reviewing that sentence and feeling a deep sense of grief.

For the 15 new people who have joined in the past month (what a head spin), you might not know much about me or what I’ve been through. I write vulnerably here so feel free to browse my Substack and allow me a review.

Skip the trauma if you’d like.

I am 31 years old. I’m a wife, mother, Christian, and writer. These identities seem to be the easier core elements of my life to identify because so much has changed. In 2019 I got clean, started a business with my husband and found a series of traumatic events.

Then we collectively went through the collective trauma of a pandemic and in February 2021 I had a traumatic birth experience. Postpartum depression was hidden with the surgical masks we required society to wear. In June 2022 I started Motherhood Minute to build some sort of community of women who wanted five minutes to feel seen.

In September of 2022, we decided to close our doors and join another company. I was exhilarated by the challenges that opportunity gave us and we opened up a second location with them. A month and a half later we were unexpectedly and wrongly fired. I felt like my whole life had been a giant manipulation. I felt like an orange squeezed out and tossed aside.

I joined another automotive industry job that taught me insurance billing which was a high-pressure position I should never have taken. But we do what we must to pay the bills when we have no other choice.

Migraines began debilitating me on a weekly basis.

Unhealthy

July 10, 2023. Suddenly I was so weak I couldn’t get off the couch. I felt like my chest was being hugged by a corset. I went to the ER and got a heart monitor (which came back fine) and doctors kept asking if it was a panic attack. I’ve had panic attacks. This isn’t it. I fainted and everyone said I was a healthy 31-year-old woman.

After 2/3 days in the hospital visit where they found nothing, I noticed a tingling in my hands. It moved up into my arms, chest, toes, and legs, and consumed my whole body. I said it felt like pins and needles but not like when your foot falls asleep from sitting on it with no circulation, more like rubbing Stinging Nettle. My weakness turned into manageable exhaustion: I could carry my kid. I could run even, but the pain persisted.

I wasn’t fired but a phone conversation with my manager was their gentle plea for me to quit and take care of myself. By God’s provision, I was able to apply to a hybrid position in marketing for a local nonprofit I had once been a barista for in 2019. I now have a dream job and coworkers who pray for me but the pain persists.

Big, Scary Words

Like a middle schooler learning how to use Microsoft Encarta on her family’s old computer (oh yes we went way back to 2003), I sometimes find that I Google definitions of words I’m pondering, even if I’m familiar with them. In this case it was the word disability.

It’s a word that feels like a dust bunny hiding in the shadows of my closet or under my bed. I know it’s there and yet I ignore using the vacuum’s extension wand to clean it up because I’m busy trying to maintain the rest of my house.

Disability: a physical or mental condition that limits a person's movements, senses, or activities.

Well that’s not comforting, I thought. I was hoping for some sort of definition that made me shake my head in relief but instead I felt deflated like a balloon.

Suddenly that dust bunny was in front of my face and on my bed, as I drank coffee and felt the aches and shocks of my body at 4am. It was staring me down and forcing me to confront its reality. This mystery illness has disabled me and I am not able to maintain my house well.

I doubt the people in my life would know this from their interactions with me. I still show up to the things I do like grocery shopping, family dinners, taking my daughter to the zoo, and church. My husband is the only one who sees the meticulous amount of work I spend thinking of how I’m going to negotiate energy. He is the only who sees me collapse into bed at 7pm but spend the night not sleeping. He’s the one doing twice as much housework as before to cover my own cleaning time.

I have been able to work an average of 6 hours a day with my hybrid job even if I’m home in comfortable solitude. Being honest about the fact I am IN pain is a blessing but it doesn’t take away the masking I do. I can’t start crying or jump up when the pain suddenly jolts or burns in me. I can’t seem to work a 40 hour week even for a job I love.

There are other big, scary words I have heard in this journey of undiagnosed pain: multiple sclerosis, fibromyalgia…

My doctor assumes it’s fibromyalgia with a pain activated by trauma. That sentence took me a month to accept in its possibility but even now it feels aggravating because it’s like a game of Mad Libs; my doctors are filling in the blanks and hoping a diagnosis makes sense. First to note, fibromyalgia is a diagnosis given by process of elimination and, secondly… trauma?

Does it make sense that my body taking life’s punches in the past five years without treatment would activate my nervous system to never calm down? Yes. But I still find a mental resistance to accepting that anger-inducing phrase every doctor repeats to me: the body keeps the score.

This anger could be grief knocking at my door. I still don’t know if I want to accept it.

I want to thank everyone for following along in this Mental Health series, which you can view along with last year’s newsletters of the same topic here.

It’s ok if you don’t see this note but if you do please avoid sending me treatment suggestions at this time. I’m doing a lot of research with my doctor and it’s mentally exhausting. Instead, I just appreciate being heard.