Tag Archives: #topomax

Managing life my lily white ass…

It’s on my blog header, it’s in my whole cheerful outlook. Let’s manage life with this chronic illness!

Look at all my coping tools!

See my shiny things!

Well right now my illness is managing me.

And let’s face it, I’m in my mid-forties. My ass isn’t all that lily-white either. I mean, we’re in the middle of a no-end-in-sight pandemic and I haven’t been outside in a bikini since the idea of meaningful political discourse was an actual thing but my ass is more of a sickly ghostly pale, not a lily white. It’s not some semi-romanticized flowerly white, it’s a “DEAR GOD WOMAN GET SOME SUN ON THAT THING WON’T YOU!!” pale white you can see deep down veins through.

I’m sick.

Really, really sick.

I hurt everywhere, I can’t sleep. My once soft and comfortable ergonomic pillow has developed claws or teeth or maybe someone broke into my room and stuffed it with broken glass or something.

My whole fucking bed is made of discomfort. There isn’t a single comfortable position I can sit, lie, stand, or lean in. Every single miserable muscle and bone in my body hurts. I swear to the Goddess the bed is subtly shifting at night, moving me around every time I get the slightest bit comfortable.

The nerves in my hands and feet are tingly and itchy and on fire and somehow cold and stabby. Oh, and throbbing, and pulsing.

The Topomax isn’t killing my ability to think like it did before but I still have a really sore throat every day and that vaguely feverish feeling, like deep bone-aches and an overall sense of doom and gloom.

I’m miserable.

There’s no shiny sticker for me to put on it.

Right now there’s no managing it either.

There’s just getting through it and hoping it feels better, or at least different, tomorrow.

Stay safe loves.

Uncomfort-food…

I am a comfort food person. When I have the flu I want soup, when my heart is hurting I want rich, spicy, Indian food and when I have been struggling for a long time with pain or illness I want a treat. I have a strong relationship with food and feeling better.

Right now I am in a really big fight with food and I am finding myself uncomforted by its existence. Right now between the knotty intestines and the Topomax my usual treatment for not feeling well for a long period of time has turned into a looping internal monologue of disappointment and disillusionment.

“Man it’s been a long couple of weeks. I sure could use a scone and some tea to perk myself up.”
“Yep, except the scone would taste like shit and the tea would taste like shit and you’d just end up throwing them both up so why don’t you just skip the eating and drinking part and do something else?”
“Yeah, I guess so.”

It has sucked. I have had this looping conversation in my head dozens of times a day and the longer this goes on the more I have it!

Worse, one of the other coping mechanisms I have for feeling better is lighting incense or using a scent infuser but now everything smells awful so the only thing I can really do to bring myself a little peace is cleaning and while the end result is pleasant the task doesn’t really feel like pampering.

Maybe I need new books. Or a stasis device I can go into for the next 30 days.