Category Archives: self-care

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.

AShes to diamonds…

and guilt about future bad acts you aren’t even in the position to do.

Join me in my latest episode!

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.

Self Care = Work

It sounds so relaxing doesn’t it? I’m going to practice self care. It sounds like bubble baths with a good book and relaxation days at a spa.

It doesn’t sound like forcing yourself to eat when you are nauseated or to exercise when every nerve in your body is already screaming or getting enough sleep with insomnia or taking a shower when touching your skin hurts you.

It doesn’t sound like applying for SSDI or acknowledging your disability or cancelling plans because you are over taxed. It doesn’t sound like doing laundry or making your bed.

That is what self-care is. It is doing the hard thing for yourself because you know it will make the rest of your day a teensy bit better.

Really it’s self-work. It’s adulting. It’s setting boundaries and learning to say no. It’s making your space pleasant for you so when you are forced to spend a lot of time in it you aren’t looking around thinking about all the tasks you should be doing. It’s making doctors appointments when you need them and avoiding triggering foods.

And sometimes it’s getting a massage when your skin can’t handle being touched because the underlying muscles need it and if you are lucky you might have relief in a few days after you deal with the bio-feedback from the massage.

And it’s missing the days when a massage was just a massage instead of a medical treatment.

And it’s acknowledging it here on your blog and then letting it go.

Much love to my spoonietribe. Keep on keeping on.