Category Archives: Spoonie

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.

Clue x 4…

I admit that sometimes I can be a little dense. It’s less an awareness thing and more an OCD classification/categorization thing. Also occasionally an overthinking thing.

For example; when I was in law school I went to see the gynecologist for a routine checkup and spent 15 minutes agonizing over the question on the intake form “Could you be pregnant? Yes or No?”
See, I was sexually active and while I did have an IUD there was statistically a .09% chance I could be pregnant, which is what I said to the receptionist at the front desk when I asked her advice as to how to best answer the question. She, of course, asked me if I was pregnant. I said “No.” She said “Circle the no.” You could hear her eyes roll all the way in Africa.

So I get that sometimes the way my mind works differs greatly from the way everyone else’s minds work, so it was no surprise to me that I only clued in to the fact that I am legitimately really quite sick yesterday while my whole family has been acutely aware of this fact for the past two weeks.

From their perspective I have been losing weight drastically, can’t eat more than 500 or 600 calories a day, have a hard time getting out of bed or leaving the house, and feel like I have the flu most of the time.

From my perspective, until yesterday, I only have a month to go until the doctor can actually fix what is wrong with me this time and therefore it’s not really that bad.

See for the past seven years every time I have gone to the doctor with a new or worsening symptom I have been given a new horrible medication and the explanation that my chronic illnesses are still kind of not well understood, lifelong, incurable, and will fuck me up forever so when I went in to see the doc about the fact that my intestines have wrapped around an adhesion in my abdomen left over from my hysterectomy and he said “No problem, we can remove that with surgery and you’ll be fine.” I was FREAKING CELEBRATING!!

I had a medical issue that could be fixed with relative ease in a relatively short amount of time with a really short recovery time!! This isn’t being sick! This is amazing!!

So that was my state of mind of the past two weeks as my family fretted over me and I hummed and buzzed about cheerfully not eating and being curled up in heated blankets and generally feeling yucky but knowing it was ACTUALLY TEMPORARY and WOULD END SOON and I WAS GOING TO IMPROVE!!

Then yesterday as my husband and I prepared for him to go back to work for the week I asked if we could spend fifteen minutes cleaning up so I could have a pleasant room to convalesce in.

Fifteen minutes.

I vacuumed. Moved a few items to the trash. Put my clothes in a hamper.

I broke into a heavy sweat and nearly passed out. I had to lie down.

That’s when I turned to my dearest love and said:
“Shit, I’m really sick aren’t I?”

To his eternal credit he wasn’t snarky at all when he responded. All he said as he sat next to me, took my hand, and held it was:
“Yes honey, you are. I’ve been fretting over you.”