Category Archives: #topomaxsucks

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Managing life my lily white ass…

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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.

#chronicillness, #eatingissues, #spoonie, #spoonielife, #topomax, #topomaxsucks, Spoonie, spoonies

Uncomfort-food…

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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.

#fibro, #fibromyalgia, #fibrowarrior, #spoonie, #spoonielife, #spoons, #topomax, #topomaxsucks, #writer, Chronic pain, fibromyalgia, health, Spoonie, Spoonie Tips N' Tricks, Spoons

Too hungry to sleep…

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yet too full to eat. Last night was a special kind of party. I lay awake with a rumbling belly, thinking about all the food I have enjoyed eating over the years in great detail, while I tried desperately to keep down the 1/2 cup of meat and veggies I managed to eat at dinner.

It was an experience I am not looking forward to repeating. In fact, right now I’m writing here instead of sipping at the disgusting copper-flavored vanilla protein shake I am too full to drink despite having eating nothing since 7 pm last night.

On the upside I have now lost 11 pounds since this all started. Only a month left to go. I have the excess weight to lose and if I can use this miserable experience as a jumping off point for exercise then I can actually start running again and maybe keep it off.

My amazing neuro told me that Fibromyalgia is a syndrome that attacks and destroys the small nerve fibers in the body, hence the pain, itching, tingling, etc. However, the good news is that exercise and motion of any kind creates new small nerve fibers, so movement literally floods our bodies with new soldiers for the fight, which is why it’s important to keep moving. I was doing a really good job with Couch to 5K but the combination of gaining muscle weight and then Lyrica weight made the running too hard on my knees so I had to stop, but I miss it. I would like to do it again and I know my puppy would like to join me. So, maybe this month will be a good place to jump start running.

See, silver lining. Not all bad. Gonna take a disgusting sip of chalky copper vanilla shake now.

Yuck.

I would just slam it to avoid the flavor but I did that yesterday and spent an hour trying not to throw it up. So, the good news about rebuilding those nerve fibers is that it’s not exercise per se that does it, it’s movement. One of the ways I make sure I move some every day, even on the worst days, is I make my arms and feet dance every time there is music played during a movie or TV show.

I also routinely perform wrist rolls, ankle rolls, and neck stretches as I rest. While there are a ton of exercises and programs out there, Yoga, VR boxing, dancing, etc., my doc was clear, movement is the key to helping out our bodies so that is what I focus on. Sometimes my only movement in a day is doing my laundry or vacuuming my floor because that’s all I can do, and that’s ok.

Stay safe loves, I’m going to try and finish this shake and maybe, just maybe, get all the stuffy fluff my puppy has strewn about the room into a trash can so I can pretend, for a hot second, that I live in a clean house.