Pining for a pandemic…

I’m a horrible human being.

I’ve been close to tears for the last several hours with no idea why.

I ran through all the usual suspects;
Did I eat?
Did I sleep?
Did I miss a medication?
Did I take too much medication?

I did all the fixes I could. The feeling remained. A vague sadness like a recent breakup or a friend moving away soon. Something ending.

Holy shit.

The pandemic.

I’m sad that the pandemic is ending.

I know. I deserve that.

I am not sorry that we are winning against a disease that killed hundreds of thousands of humans, shut down the world economy, and sent the world as we know it spiraling into a dark hole.

But I am sad that it’s ending.

You see, I have a secret.

The shutdown made many things easier for me.

I didn’t have social pressure to push beyond my energy level or risk losing friendships.

I didn’t have guilt that I couldn’t make social commitments.

No one had social expectations of me.

I was free of the social demands healthy people unknowingly impose on disabled people.

Even better, you were all living my life. My quiet, shut inside, have to figure out how to communicate with the outside world without actually going into it life. You were finally feeling what I felt. The isolation, the loneliness, the sense of being apart from everyone else.

Now you get to go back to normal… and I don’t.

I went into a grocery store today and most people weren’t masked, they were walking close together, fearless of getting close, en masse shopping for food. The parking lot was jammed with cars, the traffic there and home was jammed with cars. People were on the street, in the bars we drove by, gathering in large numbers again.

While I was returning home, still in my mask, to the room I spend most of my time in, once again doing the isolated thing without the mental company of the rest of world, once again the outlier.

The Pandemic is nearing its end but my disease is not. You will go back to a busy social life with gatherings and work and achievements and I will not.

For a brief period of time the pandemic gave me back a sense of belonging to the outer world, it let me feel just like everyone else.

Now that feeling is gone and I’m left feeling sad.

A beautiful weed …

Join Misty as she shares her most successful visualization and mindfulness technique for handling her non-stop daily pain.  — Send in a voice message: https://anchor.fm/savvyspoons/message Support this podcast: https://anchor.fm/savvyspoons/support
  1. Breathing through pain.
  2. The pandemic life was my normal.
  3. It's a cooking show for tired people who don't want to cook.
  4. A Beautiful Weed
  5. Eat your whiny cake you bastards.

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.

Managing life with chronic illness requires savvy spoons