Category Archives: #headache

The lonely war…

There is a loneliness that comes with living in pain all day every day.

It doesn’t matter how loving and supportive your family is, how amazing your doctors are, or even how strong you are, eventually, at some point, you will settle in for another battle against your invisible enemy and it will ultimately be up to you to fight it.

Again.

I am here in my cozy space. It has been built over the years to be as reassuring, comfortable, and loving a space as can be. We decorated it with intention, put in conveniences like an ice machine, a massage chair, and a freezer so I have ready access to the tools I need for self-care on my worst days.

My new cat is on my lap. Both dogs are at my feet. My husband is asleep at my side, his hand on my arm in loving support, unable to leave me without his touch even in sleep.

Yet I am feeling that isolation that comes from the approaching storm front, the impending doom of the mounting head and face pain. The knowledge that all the love being aimed at me is coming from the outside and I have to, yet again, dig deep and find the strength to get through another episode.

I am feeling the loneliness that comes from knowing all the support in the world can’t give me more energy, more inner strength. That all the supporters who love me don’t know what this really feels like, that my experience is isolated to me.

Hell, even the diagnostic criteria for my syndromes say “each patient experiences these symptoms differently.”

There is no camaraderie to be found fighting invisible battles on battlefields that occur inside yourself. There are no great songs written about our internal wars.

There is only the moment we each face, over and over, as we let go of the loving hands trying their best to help us, and turn to our internal struggle yet again.

I am not alone, but at times, this battle is a lonely one.

Trauma is a bitch…

Have you ever heard how our bodies can carry memories of our trauma within them?
I’ve experienced it a little before, crying during deeply effective yoga, or a really good massage, but having this abdominal surgery is stirring up all sorts of trauma.
Why?
Well the last abdominal surgery was smack dab in the middle of one of the worst years of my life, and I really didn’t get to deal with much of it at all.
So here is today’s podcast. It’s a healing step taken selfishly for me, one I should have taken ages ago, but haven’t because I hate to do anything that could remotely upset or hurt people. That isn’t my intention here, but it might be a side effect. Even knowing that has made me doubt doing this all day.
I have to stop impairing my own healing on the off chance my voice could upset someone, especially when I am only speaking my truth.

Misty opens up about withdrawing empathy for her countrypeople still refusing to vaccinate and her belief that if they want to have "Their body, their choice" then they can just shove that somewhere dark and moist.  — Send in a voice message: https://anchor.fm/savvyspoons/message Support this podcast: https://anchor.fm/savvyspoons/support
  1. Your Body, Your Funeral
  2. In the dark…
  3. Breathing through pain.
  4. The pandemic life was my normal.
  5. It's a cooking show for tired people who don't want to cook.

Life without Margin…

It was supposed to be a day of rest. Having come off of two days of high energy and low pain levels I knew another flare was coming. I planned to do a load of laundry, sit in the car while my newly permitted teen drove, and make a good dinner. The rest of the day was to be spent expending as little energy as possible and dealing with the aches and pains of activity.

I had my coffee, I took out the dog. The pain level wasn’t too terribly bad, about a 6. All over body aches, joint pain, headache. Your basic flu feeling.

I came upstairs to luxuriate in my bed, watch a show – my hands hurt too much to hold a book up for reading – and snuggle my dog. I came up stairs slowly, muscles aching with each step. I came to the door and low and behold there was my cat, peeing on my bed.

Suddenly my day of rest became stripping the bed linens off to see if her commentary had soaked through to the mattress protector underneath. It had. Then it was gathering up the whole kit and kaboodle, getting it into baskets, getting out a fresh protector, fresh linens, new blankets. Of course everything was on different floors of the three story house because laundry is in the basement and I live on the highest floor.

Up down, up down… can’t keep going. Get the sheets on… get the blanket on… kiddo, please help me with the pillows.
I’ll pay you to do the rest.

And I’m done.

Living with chronic pain is like living paycheck to paycheck. You may do just fine so long as everything happens as expected, so long as you can forgo some things and appropriately prioritize others.

However, as soon as the unexpected strikes you are borrowing on credit and you will have to pay for the expenses another day, or several other days. As for interest, you can push yourself into another flare up and lose days, weeks, sometimes more to lowered energy levels, high pain, medication side effects, etc.

It’s life without a margin, without a safety net and believe me, it sucks.