It’s a Bad Brain Day

Today is a bad brain day but it’s not a bad day.
My socks are mismatched, my eyes seem detached
and I don’t have the energy to play

My marshmallow brain is stuffy and numb
My face flies in butter, with a tickle and flutter
and I think I just said something dumb.

Today is a bad brain day and I think I’m unsure
I forgot what I’m doing, or maybe undoing
I hope whatever this is has a cure.

My toes and fingers are cramping and sore
And as if right on cue they start to turn blue
And I’m ready to pass out on the floor.

Today is a bad brain day – and it’s so easy to tell
When my words slip so easy and nothing is breezy
I’m living my personal hell.

I take my lumps with a spoonful of salt
with a smile and nod and stumbles and plods
I’m living my life at a halt.

But everything is ok because it is just one day
Tomorrow is better and I’ll be a go getter
And then I’ll be able to say

That today is a good brain day and it’s a beautiful day
Thank you for caring while I have been flaring
And I’m ready to go out and play.

-Krystal Elder

Yesterday we went out, and I knew it was going to be a long day. It started with a haircut. Simple, right?

Conversing with people – some I knew, some I didn’t – was tiring. It started the day off. The scents and sprays and hair product and blowdryer heat and temperature change were all a perfect storm to start off a flare.

It’s a good thing I was well rested before that.

By the time we got to the hospital for my MRI, I was in full flare. My face was tingly, the top of my head numb, and the back of my head freezing because I shaved it. (Worth it!) The elevators increased my dizzy spells, I felt like someone was sitting on my chest while trying to navigate that section of hospital we weren’t familiar, which was confusing. Nope, it’s not anxiety. It’s just one of the signs of a flare up. Good thing there were maps and I was being escorted by my very own wonderful, good looking security personel. (He’s not there to protect me from anyone except myself, really.)

Their waiting room with family members was cozy. But going into the back, stripping down to the knickers and wrapping in a sheet was a whole different matter. It wasn’t cozy. It wasn’t warm. In fact, it was like the third level of hell, except they let me keep my socks and boots as a reward for good behavior. I was thankful that I was wearing my shiny new fancy compression stockings for a little warmth, but the sheet did little to stop the icy breeze from flowing up my light, summery, extra-fashionable hospital gown.

I had already been struggling with the pressure changes and my joints were stiff and sore from the temperature drops at night, but by the time I was called into the room my body had stiffened up and it took me forever to stand up, and for once it wasn’t just the blackout and dizziness. I begged for a blanket – I was shaking so hard I don’t believe they could have possibly done a successful, clear scan if the room itself wasn’t any warmer that everywhere else in the corridor.

I was sooo happy when she offered several warm sheets, since there were no blankets left. It was instant relief, and I was able to relax with the strange space helmet in the teeny tiny holespace they put me into. I am so, so grateful I’m not claustrophobic. Quite the opposite, actually, and I find it somewhat cozy, until I nearly started laughing out loud. The sounds of the machine reminded me of Strongbad’s retro rave.

The MRI seemed really short. I’ve had two before this – one for my knee, which I barely remember, and one for my finger to assess an infection in the joint. I recall the one for my finger taking an extra long time – I kept falling asleep, and I tend to twitch as I’m falling asleep. Of course, my hands are the most affected by this, so the techs kept having to rescan. We tried changing the radio station they had me listening to, and turning it up. I ended up singing to keep myself asleep, much to everyone’s amusement.

Thankfully, there was no twitching this time, and the scan didn’t take long at all. It’s been a few years since my last scan, but things have changed since that one, and it seemed quick and easy. Until I stood up. I felt like I was in a dropping elevator, which tends to happen often, but it hadn’t been that bad that day until then. The tech apologized, and told me it was fairly normal for people to feel dizzy after getting a head MRI. Apparently, they mess with the alignment of the ions in the ear canals, which can cause some people some side effects.

The ringing in my ears has been louder, as well. Bother. Oh well. Just one more thing.

Afterwards, we met up with a long time friend of mine from high school, and we enjoyed smooshi and snuggles at a quiet sushi place on the south side. Until, that is, my flare up became a permanent fixture on my face and my head became numb and it was time to go.

Today was a train wreck and a half, though, as I pushed further than I knew was good and the dumbs took over my brainspace. My husband went to his training class and had to work on his truck after, so I had the day to myself. It took way too long to be able to get out of bed, to remember to eat, many circles in the kitchen every time I forgot what I was doing, and nearly forgot to feed the cat entirely, even though I had his food dish in my hand. Empty. Because I forgot to fill it with his gooshy food. And then I came back upstairs to fill it, forget (again) what I was doing and went to make my own lunch, and dumped the can of salmon for myself into his food bowl instead.

Sigh. He had a treat, and we shared the canned salmon.

I’ve had a few moments of surmounting frustration, but all-in-all, I remembered to just breathe, to take it easy, and remembered that tomorrow will be better. And I’ll rest more so I can go out on Christmas with something resembling normalcy for a little while, after which we have nothing lined up again for awhile and I can recover from appointments and visiting until the next round. And who knows…. maybe I can get some fun projects done. My creativity has been itching again, and I’ve been playing around with a few things here and there. Nothing major, but enough to take the edge off of feeling useless. It’s nice to be able to make things without expectation or deadlines, so I’ve been enjoying doing the things I’m able.

And now…. more waiting. With the holidays here, the results may take a little longer than usual. If there’s something that comes up, my internist will call me in. And if not, I see him next month and he’ll run a Lyme disease series and send me off to a Rheumatologist, and hopefully we’ll be closer to getting a few answers.

Fingers, toes, ears and all of the things are crossed.

I miss my brain. I hope I can have it back to normal, one day.

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