Category Archives: #chronicillness

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

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

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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.

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

The lonely war…

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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.

#chronicillness, #chronicpain, #eatingissues, #tired, Depression, Spoonie

crawling out of the vortex of suck…

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(or my steps for getting back into the world after falling into a medically induced depression.)

I’ve been struggling a lot with morale over the last month.

That’s an understatement. I’ve been wondering if being in this much pain all the time is something I’m going to be able to continue to do for as long as I have previously planned.

To make matters worse, I keep getting sicker, in newer and unexpected ways, as though my body wants to make sure I don’t get too comfortable with the degree of discomfort I am currently dealing with.

The latest issue, an out of the blue inability to eat coupled with stomach pain, weight loss, and constant fullness, was supposed to be an easy fix.
I was scheduled for an in and out surgery and told I would be better in a month. Instead I’m looking at confused medical faces and clear imaging. Another unique problem they need to send me to a specialist for.

In the meantime I’m unable to eat more than about 1/2 cup to 1 cup of food at a time. I struggle with a small protein shake or cup of soup. So I’m losing weight, low energy, and have no energy at all.

I’ve been in bed in my room for the better part of a month as I healed from the unnecessary surgery and grappled with this idea that I have to deal with yet another issue. I was getting down. Dark. Sad.

Then I realized I have to climb out of this damned vortex of suck and find a way to start living again or, simply put, I’m not going to make it through this.

So I started small. I started doing 2 or 3 sit ups with my husband before his workout, the old-school kind with him holding my ankles for me. Then I added planking for 10 seconds. I increased the amount of planking a little bit each day. I am now up to 25 seconds.

I ordered some vinyl wallpaper to decorate our room and made small changes to the walls, sometimes a few feet at a time. I did the wall behind our bed one day and it took 6 hours. I had to rest after. I attached each strip.

I walked back and forth in front of the house like someone who is looking for a lost object of great value.

I started picking up small things around the house, dog destroyed toys and torn up cardboard, sweatshirts that need putting away, etc.

I cooked a meal for myself instead of eating only smoothies.

I opened the windows in our bedroom and changed the sheets, made the bed, and vacuumed the rug. Then I lay on the bed covered in sweat and panting until I could sit up enough to take ibuprofen. Then I curled up under a heating pad. I overdid it. Too much too soon.

I rested a few more days.

I started doing more, cleaning things, showering, making small changes. I sat down to paint and realized my arms were tired after holding my brush up for a few minutes. I cried about that too, but then I lowered the easel and painted some more.

I fixed small, easy to fix problems around the house. Rehung artwork and photos. Folded and put away blankets, asked for help relocating small furniture.

I walked my dog, made myself sit on the porch in the sunlight. Finally went and saw friends.

In short, I forced myself to re-engage.

I’m still hurting. Physically, mentally, and emotionally. I still feel overwhelmed and tired and just like there is such a slog ahead of me.

I no longer wonder why I am doing it. I am feeling satisfaction in accomplishing small things. I am feeling better when I am not lying here with nothing to think about but pain.

I am slowly crawling out of the vortex of suck.