Category Archives: Spoonie

#chronicillness, #chronicpain, #fibromyalgia, #spoon, #spoonie, #spoonielife, #tired

Goblin Mode – not just OED’s word of the year.

Leave a comment

It’s the holiday season and I want to crawl into a cave and hide from everyone I know.

It’s not you, it’s me.

I’m serious. You’ve done nothing wrong. It really is me. My inner goblin has been greedily grasping at everyone solitary moment I’ve been able to muster for the past month.

Her hunger is becoming insatiable. She wants to wander around a vacant room in no bra, loose workout clothes that are so soft with age they are practically see through, and soft socks so thick I’d have to buy shoes a size up to wear them out of the house.

She wants to binge-watch shows for days at a time or listen to whole books on tape without stopping for a single conversation.

She wants to go entire days without uttering a single word aloud.

As the days tick by to the greediest, gift-givingest day of them all my inner goblin is taking me over and urging me to run and hide and become one with my sheets and blankets. She turns my eyes from the sunlight peering through the window in the morning and pushes the phone away from me when a text comes through.

She is drooling for a chance to disappear.

#chronicpain

WHY IS THE AIR SHARP?

Leave a comment

HOLY MOTHER OF HELL! WTF!?

https://videopress.com/v/PH4o1Wdz?resizeToParent=true&cover=true&preloadContent=metadata&useAverageColor=true

There I was, managing my life with small nerve fiber neuropathy when BLAMMO suddenly one evening my hands and fingers felt like I was playing with slivers of broken glass anytime I touched anything.

This was not some gradual slide over time either. I work with my hands all the time. I use yarn, paper, glue, fabric, rocks, paints, cardboard, you name it. Usually I am fine.

Not this time. This time I’m folding my laundry and putting it away and then my socks are razor blades.

It – to understate it – sucked.

I took half an Ativan under the theory that it’s designed to send nerves into a coma and went to bed.

The next day I was a bit better though am definitely still more sensitive than I would like, all over really. I messaged my Doc and he asked “Have you been under more stress lately?”

Well duh, yeah, but knowing why I’m in a flare up doesn’t help me. You try to avoid stress when you are the disabled mother of a high school and college student, wife of a cop, and daughter/caretaker of two aging parents. It’s not like I get to just not be in stressful situations. In fact, trying to avoid them is like trying to keep cats out of a room, the harder you work to keep them out the more they want to get in.

So now that we’ve acknowledged that being a vibrating ball of stress is kind of my daily life can we move on to management please?

#chronicillness, #chronicpain, #fibromyalgia, #fibrowarrior, #headache, #illness, #migraine, #spoonie, #spoonielife, #spoons, #tired, grief, health, pain, pain and sorrow, painmanagement, self-care

The lonely war…

Leave a comment

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.