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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Little changes can be bigger than they seem

My days are plugging by, with me plodding along an old, worn path I’ve never been down and I’m taking in the scenery as I go. I have no idea where I’m going. I’m just going, and wherever I end up…. there I’ll be.

It’s really not such a bad thing, most days.

Other days, I’m struggling. I get frustrated, sometimes, especially when the brain fog is thick and my eyes are tired. Have I mention I wake up exhausted? Sleep doesn’t help, and getting through simple tasks takes all of the energy I don’t have. I’ve been a person with goals for so long, even if they weren’t incredibly clear, I had them. They were fluid, often transparent, occasionally tangible, and seldom met to completion. And it worked for me. At least, I thought it did.

Changing that way of being out of necessity has it’s ups and downs, and there are no words that can really portray what it’s like. Most days, I’m content to just do my thing, which is maintaining the house, writing, crafting a little and taking care of the plants of animals. Very simple, very easy, but still exhausting. Other days, I’m frustrated, mournful of the life I had and want back, and resentful that the more I tried and still try to be healthy, the more my health deteriorates and there seems to be no way to win.

(Don’t worry. Those phases pass. But they happen, and it’s ok that they do. I’m human. I’m expected to have bad days, too, and I have to allow for that.)

Life is life. It’s not a game. There is no winning or losing – there’s living. And either you’re living or you’re not.

And oh, the things people say without really knowing how much they hurt. I’ve been learning this lesson, and learning to control my knee-jerk reaction.

“Keep your chin up! At least you don’t have cancer, right? At least you’re still walking. At least you are functioning. Don’t worry. Everything’s going to be alright. I’ll buy you a drink when you’re better. Oh, you look so healthy! You look so great! Are you sure you’re not too focused on your symptoms? Have you tried supplements/vitamins/magic smoothies/dart frog poison/essential oils/acupuncture/stabbing yourself in the eye with a fork?”

The list grows. There’s always some new miracle cure, some amazing diet, some medication or happy thought that will make everything better.

It’s hard to cure something when you don’t know what it is, nevermind if it’s curable or not.

And the thing is, as frustrated as I get, I have to remember that not oh-so-long ago, I didn’t understand either. I didn’t understand the crippling exhaustion, or the heavy brain fog, or the heavy weight of the limbs, or the affects of gastrointestinal distress. I didn’t understand that sometimes eating healthy isn’t as easy as it seems. I didn’t understand the fear, the insecurity, the disbelief from others. And I definitely didn’t understand how unhelpful I was being while trying to be helpful. I really wanted to help. I really thought I could. And this experience has taught me that, sometimes, it’s just not as easy as it seems.

It’s a good lesson to learn. One that I’d like to graduate from and move on, now. The lesson is imprinted deeply. It’s a humbling experience, to be sure. I honestly felt like I was healthy and would live a long time that way, and I really thought I could help others feel better, too. 

But that certainly changed. I have no idea how long I’ll live. Maybe a long time. Maybe a week. That’s the thing, though – we have no control or insight over that, do we?

I wanted to help people feel the same I did, because I felt SO GOOD. I was on the healthy bandwagon, because I really believed it was the thing to do. And lately, it’s been really hard to know what to do, what to believe and how to move forward. If I can’t help myself, how can I possibly help others? This has been a huge blow to my own confidence, and I find myself questioning everything I’ve learned and everything I thought I knew.

And where I stand is where I am. I’ve let go of so much. I’ve let go of the things I thought I knew. The things I still know. The things I didn’t know. The things I have yet to know. I’ll know what I know as I get to know them. But sometimes, things change, and so does the knowing that comes with those changes. 

Letting go is hard to do. But it’s getting easier, and the more I let go the easier it is to move forward into the big, scary unknown.

Multiple Sclerosis. Lyme Disease. Lupus. Postural Orthostatic Tachycardia syndrome. Neuralgia. Mast Cell Disorder. Myasthenia gravis. Fibromyalgia.

We don’t know what’s up. The big ones on the table right now are MS and Lupus. It’s a waiting game that I’m just trying to survive with the best quality of life I’m able to have… which involves warm blankets, heating pads, furbabies, hugs, forehead kisses, hot chocolate, and a whole lot of forgiveness for myself. This might not be enough for many people who want to know answers right now – but it has to be good enough, because it’s all I’ve got at the moment. So I’ll take my comfort where I can, and be grateful.

Hari om.