Category Archives: Spoons

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.

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.”

Too hungry to sleep…

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.