I’m sleeping and feel the sharp sting, the acute pinpoint pain grabbing my right hip bone.
On my back, I lay and lean into this sleepy wisdom — we all have pain — every single one of us humans.
It may be heart-sting or a bruised ego or a bruised body. We all have pain.
I turn 43 years old this summer. For years my back would hurt so bad people could read on my face something was wrong. They’d say, “Aimée, are you okay?” I’d rub my lower back, which felt on fire with pain, and say, “Yes, I’m fine. My back’s just a little sore.” It hurt so much I needed to sit down. Standing hurt. I didn’t know what to say or how to explain this.
I was supposed to be fine. A genetic specimen of good health.
My dad has a genetic disease called Gaucher. It can cause weakening of bones, intense pain, and myriad other problems.
My knees feel raw and tender as I lay still, wondering when and if sleep will overtake the nagging feeling of persistent pain cues from my body to my brain. At 10:00 pm I took some cannabis tincture. It’s 2:16 am. I hurt.
I know I’m not the only one.
Yesterday when I typed, my stiff fingers ached. My back started to scream. My wrists firmly demanded, “Be careful. Be gentle with us.”
I tried to listen. I tried to gain ease knowing I’m not the only one. We all have pain.
In the world of Gaucher, many carriers have been asking if we could have pain associated with being gene carriers. For decades the answer was a definitive “No.”
Why are so many carriers expressing symptoms of pain if that’s true?
There are new tests with more precision to identify carriers. In the late 1970s, they thought the carrier test was reliable.
After the past year, in which I finally shared my pain with my family and friends, my mom began to wonder if there might be a connection between my pain and my being a Gaucher gene carrier. She researched and forwarded the information to me to share with my doctor. For example:
There are more than 400 genetic mutations known to cause Gaucher disease. Not all of these were known decades ago, nor do all screening tests today cover every single one of them. In rare cases, it is possible for genetic screening to miss a mutation. An enzyme test called a beta-glucosidase leukocyte (BGL) test will almost certainly show if you have Gaucher disease. Find out about testing for Gaucher disease.
In the late 1970s, my mom got a test to see if she was a Gaucher gene carrier before my parents conceived me. They didn’t want to pass on the disease. They thought they were free and clear when her test was negative. They thought I wouldn’t have pain.
We all have pain.
My hip still stings this morning. My ankles, knees, and wrists are nagging, “We hurt. Go easy. Be gentle. Please.”
Yesterday I heard my husband in the kitchen, loading the dishwasher. He sounded annoyed. How do I know? 20 years together. The clanking of dishes. I just know.
I’d told him I’d been flaring and exhausted for days. I don’t think I’ve conveyed what that means very well. Or maybe I don’t give him enough credit. Maybe I feel guilty and ashamed and misinterpret the clanking of the dishes.
It takes all my energy to get out of bed. Running a load of dishes feels like running a marathon.
Yesterday, I felt guilty, so I got up to run a load of laundry. I opened the garage door and heard the machine already whirling. I checked the dryer. Empty. I picked up my clean clothes off the back of the dining room chairs and hung them up. I didn’t touch the kid’s clean laundry; I handed David a pile of his clean shirts and pants. I knew I couldn’t do it all. Or rather that the pain would start screaming if I did too much.
Determined to do something useful, I grabbed plastic bags and headed into the sunny June day to pick up the dog poop in our backyard.
The sun heated my back and shoulders. It felt like a gentle massage. Heat therapy. I am thankful for our pets. They are my pet therapy. I wandered the yard and repeated the stooping motion to pick up Nugget’s small poop piles (Chihuahua and Jack Russel Terrier mix) and Juno’s huge poop mounds (Chow, Staffordshire Terrier, Weimaraner, Akita, Rottweiler).
Near the Red Haven Peach Tree were scattered fallen peaches that never got the chance to ripen. I picked up the peaches to add to the bag. The tree is diseased or has a pest problem. Or both. The tree’s buds swell and bloom. Peaches set and begin to grow. But, about a month into their growth, the fruit begins to ooze clear gooey sap from their flesh and out of their skin. I wonder if peaches feel pain. We all have pain.
I tied up the bag of dog poop and tossed it in our outdoor trash can. I washed my hands. Washed the faucet. Washed my hands; realized a little bit of my OCD was creeping back in.
We all have pain.
I know this will shock you, but I’m not perfect. Caffeine and sugar likely contribute to my pain flares. I drank coffee yesterday and had a Payday candy bar and a bag of chewy Sprees. I quit eating processed sugar like that over a year ago, but last night I indulged.
My pain hadn’t abated and I wanted a sugar high. The hug of candy. I told my husband. He doesn’t usually indulge me with my candy cravings. I don’t usually ask for candy anymore. He went to the gas station and bought me some.
Earlier in the day, my intuition told me I needed to drink cold water, so I asked him to go get me ice. He grabbed a huge gas station cup of ice and brought it to me. I added electrolytes and sipped the icy water. I felt a wave of relief wash through my brain, my body. I thanked myself for leaning into my intuition. I was thankful I asked my husband and my husband went to get the ice. Lately, even driving anywhere feels like a monumental task.
I didn’t chastise myself for this.
I asked for help.
I was honest with myself and my husband.
I was gentle.
I’ve felt pain since I was a child. I don’t remember exactly when I realized my body talked to me through pain signals. I do remember being a teenager and feeling intense pain. I told myself I shouldn’t feel pain. That I was young and healthy. That I should tough it out. My dad was the one in real pain. Not me. I tensed up and barreled on — exacerbating the pain, I’m sure.
The scent of BenGay triggers memories of my dad in excruciating pain, rubbing the minty cooling ointment onto his skin, his tender screaming pains, searching for some relief.
My pain isn’t the same as my dad’s. Over a year ago, a doctor finally confirmed I am flare-y. I show symptoms of someone in chronic pain. She sent me to a rheumatologist. After a slew of tests, nothing was found, except I might have some arthritis in my hands. I failed (passed?) the fibromyalgia pain points test (though I’ve read this information from Mayo Clinic that this is no longer the best or only way to diagnose fibromyalgia).
My PCP advised me to accept my pain and to focus on treating my symptoms. She told me that research hasn’t caught up to autoimmune disorders that cause chronic pain.
She told me she believed me.
You see, for years I thought I might be crazy. I might be making this up. It might all be in my head. I might be over-reacting to my aches and pains.
When I was diagnosed with OCD, I was informed that Cymbalta helps with the treatment of faulty pain processors (what happens with fibromyalgia) and OCD symptoms. It has helped alleviate my symptoms of both OCD and pain. I think it’s more effective for OCD, anxiety, and depression, but it also puts a dent in the pain. For that, I am thankful.
We all have pain.
Getting the genetic tests ordered has taken several weeks. On June 17, I go to see my doctor to pick up a prescription to bring to a special lab. That’s when we’ll start looking at whether or not my pain is related to being a Gaucher gene carrier or if further tests are required to see if I have a version of Gaucher disease. This could only happen if the 1970s test my mom took was incorrect and she is a gene carrier.
My feelings are mixed. Most people might think I want a result that clears Gaucher from having anything to do with my pain.
In my family history, there’s osteoporosis, arthritis, mysterious chronic pain. It’s not exactly shocking I live with pain when I think about my family’s health history.
Part of me wants the test to say, “Yes! Gaucher is the reason for your pain. Here are some treatments to try.”
Because then there’s an answer instead of a mystery.
I can’t get comfortable as I type this, laying on my back, in bed, thumb-typing on my phone. My hips are stiff and sore. My shoulders and neck ache. My husband came in to check on me. He squeezed my leg and asked how I was doing. I tried not to cringe. All my pain receptors seem to be on overdrive.
“I’m still flare-y,” I said.
He nodded and let me get back to thumb typing.
Now I’ll make some coffee — espresso and oat milk. I’ll add some cannabis tincture. I’ll wonder when this flare will pass. My aunts come to visit us from out of town in a few days. Will I still feel like this?
I’m done tensing and barreling through pain and crying behind closed doors. If I feel like this, I’ll be honest with them, with myself.
When I finally drifted off to sleep last night, it was with this wisdom I knew I’d share with you in the morning:
We all have pain. It helps when we are gentle with ourselves.
Go gently into the world, friends.
It took me decades to realize the inherent strength and wisdom in gentleness. To talk with my physical, emotional, and psychological pain with kind honesty.
We all have pain.
This approach of interacting with pain in a gentle manner feels like a balm, a massage for my deep wounds and aches — physical, emotional, and psychological.
I invite you to try the same approach.