Drowning in vibration.

Let me begin by saying, I’m no doc. If you got problems or pain, go see a doc.

Moving on.

I was diagnosed with Chiari Malformation. I’ll save you the google and give you the short go. The base of my brain is not sitting properly inside my skull. It’s resting all of it’s massive smarts, directly on my spinal cord. Therefore, it hurts. It also gives you fun add on features such as, feeling like you are ‘electrified’, it’s a vibration. It messes with your speech which super sucks if you’re a talker like myself. Oh and it hurts. Like, a lot. Each and every day. SO fun!

I’ve had migraines for as long as I can remember. Turns out playing any contact sport is a no-go for “chiarians.” -Just made that specific name up by the way. Its sounds cool though! Star Trekky-ish- Not that I was anything other than a bench warmer, but I got my face full of elbows occasionally playing basketball. Not a great choice. Nobody knew.

ANYHOO, I make light of a whole lot of things because that’s how I cope with pain or uncomfortable situations, like talking about my kryptonite. Mine just lives at the base of my skull.

‘Suck it up buttercup’ is my go to saying, but sometimes I’d rather just punch MYSELF in the throat.

So let’s dive into the ridiculousness that’s in between my ears. On my worst days, I take my medicine and avoid people at all cost. Not just because of the pain, no. Sadly, that’s the EASY part. I’ve got ice caps that I proudly wear in public. Because moms don’t get to stop. What I’m talking about is, well, talking. Speaking in general is really hard when your brain is firing off. I’ve often compared the ‘fire’ to a sauce pan full of water. You know that sizzle/buzzy sound when the water touches the hot sides of said sauce pan? That’s ALL I HEAR AND FEEL. Trying to talk with THAT going on through your head and down your body, when you’re already looking for a squirrel, is really hard and distracting. Which can raise your anxiety. Which affects how you act socially. So now you’re a super spaz with your brains out. Just out there in the world trying to talk to your friends and hope they don’t disown you.

Rinse. Repeat.

By ‘feel’ I mean, it’s what I can compare to -don’t you laugh- sticking your finger in a socket. You ever do that? Obviously when you’re little. Obviously not on a dare. Obviously you were an idiot as a child and just stuck your finger in there. Yes? Same! Now, that feeling but in waves, all over. Sounds fun yeah? It’s not. It has affected my leg mobility in the past. Which as I writing I’m thinking about the day I rushed home because I could feel the intensity of the migraine growing and knew it would be a bad one. As I walked into the house, I tried to safely walk towards my better half for a smooch. Along the way, my legs were jerky and slow. It was very evident in the beginning of my diagnosis. It is still just as evident. But as a chronic pain individual, you learn how to hide your symptoms. I couldn’t that day and it was on full display for all in my house to see.

It’s very worrisome being married to someone who never knows how tomorrow will sound or feel. Will there be cancelled plans. Again. Or a good day. A hopeless feeling as the caregiver at times. But I always rest assure that my boys understand that there are days where I call ‘not it’ and they have to handle whatever business needs to be dealt with. I don’t like to think about living through something like this, with zero to little support. It’s already terrifying enough. As some of my fellow Chiari’s discuss in our Facebook groups, not having support would be and IS devastating. If you know anyone with a chronic illness I beg of you, shareyour grace with them.

There’s a lot of back and forth in a solution. It’s either medicate until you die, OR decompression surgery. In the chiari community it’s known as a ‘zipper’ because when they are done slicing and dicing, you have what looks like a narrow zipper pattern that stretches from the base of your neck, to your occipital bone. Neither of which sounds pleasant but it’s an answer.

I’m not there yet as far as the zipper. I’m choosing to medicate for now.

Along with the pain, speech, strange add on features and wobbly legs. It affects my eyes in the worst opportune time. Such as, mid conversation with a fellow homeschool mom that I adore and honestly, look up to. And there goes my twitchy eyes. Ope! Wait can’t hear her, tad loud in the head cavity that day. Not to worry! I’m just trying to focus and only hear her and not have my face and eyes twitching. NBD. She probably knows I’m a little jumpy. She might not know that I’ve actually got something wrong with me. That’s cool. That’s my opportunity to educate! To talk about it. To share with others so maybe, maybe that person -any person- doesn’t feel alone or scared and contemplating their life span. Maybe they’ll see that no it’s not ok. You’re not ok. Hell neither am I. But you are not walking alone!

If it’s any consolation, if we ever get to face to face conversate. I’ll give you a hug. I’ll never show that I SEE your pain. I will laugh with you about how weird we are. And joke that normal folks don’t have brains as big as ours. Xoxoxo