Pain Management

I don’t particularly like talking about myself, but I know I've got a chronic pain crew out there somewhere.

I was diagnosed with fibromyalgia when I was 18. Something just never felt quite right.

I was always hurting no matter what I did or how strong I got. My body felt worn and torn in ways it shouldn't.

Enter mast cell activation after having Noah in 2020 (I had full body hives for three weeks) and things have never been the same.

I recently learned that my neuropathy symptoms likely aren't due to my spine or vertebrae, despite having arthritis. This means that the symptoms (neuropathy, tachycardia, muscle spasms, pain, slow wound healing, etc) are caused by a separate condition. Now I've had the nastier diagnoses ruled out, like ALS, but I am struggling to find a better quality of life; standing up is a challenge as I write this blog.

The fact is, my neurologist has told me "idiopathic small fiber polyneuropathy" was most likely years ago. However, denial can impact us all.

My response? "So about my spine..."

It's reasonable if you think about it.

Arthritis has treatments.

Even autoimmune conditions have disease modifying medications developed.

So, to that idea I clung for many years.

It is definitely easier to say I have a "bad back"

I was told at the neurologist's office that idiopathic polyneuropathy often requires palliative care.

I froze.

I'm a nurse, I know what palliative care is.

Palliative care is a specialized medical approach that improves the quality of life for patients and families facing serious or life-threatening illnesses by relieving suffering and managing symptoms that interfere with daily life like pain, stress, and sleep problems (Google AI was used in this definition).

I mean, Isn't that where I am?

I've expended much time and energy on trying to make myself feel better with the end goal being to feel better.

"One day when I'm better, I'll..."

No.

Is that even possible? When is the last time I was pain free at this point? At least three years.

I needed to adjust it to a goal that was possible.

I worked my way through the stages of grief, spending most of my time in denial, and decided that I will no longer abide by "One day when I'm better, I'll..."

I won't lie. I really wanted a good bounce-back story. You know the kind. One where I worked my way out of physical disability and back into a fulfilling life without pain and mobility problems. Depressed? Never! Healthy Megan would smile on the treadmill; you would get to see her work her way from walking to running. Lose her balance? Not this healthy mom! Healthy Megan drinks green juices (I have a juicer in this fantasy). My skin is clear, my hair is lush, and my poops are normal without MiraLax. All I had to do was change my diet and get on the treadmill and I got healthy!

Back to reality, you're not getting that kind of story here.

I had to throw that idea away.

It's plenty of other people's realities, but it's not mine.

Symptom Management

Symptom management looks differently for me than it does a lot of people, and that's fine.

It's B12 shots.

It's shorter walks.

It's yoga and stretching

It's weekly medication set up.

It's cleaning in shorter bursts.

It's weakness walking up the stairs.

It's taking supplements just to see if they'll help.

It's keeping up with appointments for me and my family.

It's the sound bath lady:

Listen to her with noise canceling headphones on please!

It took me a few years to accept a new normal, and I'm still not sure I am 100% there, but

The chair in my kitchen is here to stay.

I’ve learned to accommodate both my mind and body

Rather than flinch away from the pain, I've accepted it as a part of me.

I use a lot of sound therapy to cope with pain and help it to fade into the background.

I recently read the book High Functioning by psychiatrist Dr. Judith Joseph. To be honest, I've spent much of my adult life in a depressive episode, so I was interested to hear the perspectives of a psychiatrist with her background and experience. I found her book easy to implement. One thing that really stuck with me from the book was the suggestion to find the joy in every day things. The author focuses on "this and that" thinking and shifts focuses away from "this or that" thinking that tends to get people stuck in illogical loops in their heads. Psychotherapist friends may recognize the technique.

If we apply this concept to my current situation, I could be finding the joy in every day things, every day, in spite of my physical pain.

This idea lifted some of the fog that's hovered around me most of my life.

The type of fog that prevents me from seeing clearly, but now I see some fragments of joy. It started small at first, like it had to break through glass.

In the colors of the fall leaves against a gray sky. Or a blue sky. Both are great.

In painting pumpkins and sipping coffee

In my corgi when she gives crazy eyes

In the silliness of my boys decorating for Halloween

In embracing my cooking chair

In the boys playing in the yard

I do see it now, sometimes.

I'm starting to see joy.

Until next time,

~Megan