The “old me” would have had to continue on with yesterday’s blog because of my “ocd” of finishing things. But with my disease, my mind tends to go off in different directions and on my “bad days” – as today was, only chaos is swirling around.

I thought since I was having one of my bad days it would be a great time to quickly write a short blog about how I feel on these particular days.

I guess for those who aren’t sure or don’t understand …. take your most hectic day and cram it all into one hour. As a mom, that will be my view point. Waking up, getting the kids up, getting them bathed, dressed, make breakfast, do the dishes, shower yourself, get dressed, make school lunches, get the kids on the bus, let the dog out, take out something for dinner, start the car, drive to work, work your schedule, drive home, help kids with homework, make dinner, do the dishes, spend some time with hubby and kids, get the kids ready for bed, shower, read or watch tv, then sleep. Ok? Do all of that in just one hour! For business people; same morning routine, adding in traffic, airline delays if it fits, meetings, deadlines, bosses, employees, etc. Get my meaning? Again, cram it all in just one hour. (Oh, and don’t forget the phone calls, texts, emails etc) Can you do it? Reasonably or maybe a portion, none or some.

In my world, the above chaotic day is what I face in just attempting to take a shower. Which tonight, yes, was my meltdown. Doesn’t seem possible? It is! By the time it took me the energy and mind-set to just know I have to take a shower, then the help and aid of my hubby (or aide, whomever is with me to help) just to get into the shower and proceed from there, all ready has me exhausted. No, not easy at all. Which faucet is hot again? Did I all ready wash my hair? I don’t remember. I’ll just do it again. Half way through, grab onto my handbar just to figure out how to make my body breathe. Not catch my breath, though I’m sure that’s a part of it too. But with Chorea, to actually tell my windpipe to breathe in, then out. Sweating again. Tremors are so bad in my airway that I struggle to just hold on and push through just to finish my shower. But wait, did I yet wash myself? Did I shampoo my hair? Yes, same question. Still don’t know the answer. Sometimes, just do it again, and again, and again. Finally, I tell my aide I’m done. A death grip on all my grab handles just to keep me upright and not fall – again!! Yes, again. Many numerous falls out of the shower due to my tremors, dizziness, etc. I have so many bruises I don’t even remember when or how they happen some days. Ok, now I have to dry myself off? Ugh. Then .. hmmm.. what was next? Oh yeah, deodorant, comb my hair, take my meds. By now, I’m completely spent. Most of the time I need to just sit on the toilet seat or bath chair just to catch my breath and try to remember the next thing to do. I believe it’s getting dressed. Not so easy for me anymore. My left side of my body is completely useless due to my Chorea. Thank God for my aides to help with socks, shirts, etc. Again, sit some more and rest. Yes, I am still in the bathroom at this point. Ok, now time to stand and walk or shuffle as my Chorea has gotten worse. I am now plastered in sweat. Didn’t I just take a shower? I don’t remember but neither here nor there, I couldn’t attempt one now anyways. I make my way to the couch, though most times, straight to bed. Now time to remind my brain to start breathing normally again. In, out, in, out.

I look up. It’s now dark out. Is it morning before the sun rises, or is it night after the sunset. I don’t know. But I do know I don’t have the energy to figure that part out right now. I look down, my fingers are so swollen, the bottom of my feet hurt so bad. Like I’m stepping on nails. More side effects from more new meds they put me on recently – at least I think it was recently.

I want to say so many words to even attempt to help others understand what is going through my mind right now. Chaos, frustration, anger, resentment, hopelessness, sadness. I want to scream and cry all at the same time. I tell my daughter constantly, they need to make an emoji for “tearing my hair out” – because that’s exactly how I feel at these moments! And over what – just a simple shower.

My beautiful husband sits and quietly waits for me to settle in (and down). He knows at these moments, I can’t be spoken to, I can’t be touched (no hug is any solace) only another “pesky” thing I have to make my brain try to understand. “Pesky” sounds harsh I know, but with that “hour” I explained earlier, just happened to me. The littlest thing annoys me so swiftly, even before I can even grab onto some sort of sanity to not let my anger show. For those who don’t know me personally, I was always slow to anger. Always, calm, quiet, the “person who makes sure everyone else is happy and are ok”. Others before myself. No, I’m far from being a saint, but I just never bothered with trivial things. Why get angry over something so small. Things can always be so much worse. But not on my bad days. My beautiful stepdaughter’s voice just an octave too high, the rustling of a potato chip bag, the humming of the furnace turning on – all of these just throw me over that cliff of no emotional control. Oh, how did I ever get to this point. This isn’t me. This isnt who I am.

This is how much I hate this disease!

Another picture for you to think of. You are in a crowded room full of people you don’t know. You hear hundreds of conversations going on around you, clinking of dinner plates, glasses being “tinged” off of another, music somewhere overhead, lights that are just way too bright, and the room is hotter than a sauna. Well with me, all of that is how I feel when two people raise their voice. Or when multiple conversations are going on at the same time. When the TV is on and someone is trying to have small talk with me. The sound of a door slamming, rain against the window, my dogs barking as a neighborhood cat darts through the yard. Yep, I’m in that room, deep in the center, surrounded, claustrophobic and literally feeling like I’m going crazy. Or at least just wanting to scream at everyone and everything to just shut up. (Which btw, shut up is not two words I like very much)

Again, for those who don’t know me. I was the person who could do 5 things at once literally. Multi organizer of many aspects of my life, an organized and overly clean home and person. Someone who could juggle being on the phone while paying bills online, watching snippets of a TV show and carrying on a conversation with my child about their day’s events – all at once. The next day was planned, scheduled, and all ready a “done deal” in my mind. Now, I don’t even know how I’m going to wake up tomorrow morning and just figure out how to get dressed within an hour. Oh, and those texts and emails from loved ones. They are all very important and are all endearing to me, and I would be completely lost without even one of them. But on my bad days – I can’t even convince my hand to pick up that phone to read one of those precious messages. I was never a procrastinator before this. I always immediately did what had to be done and then relax and enjoy a good book. I learned that from my mom. 🙂 I don’t even remember the last day I had felt that good and secure to know that everything is ok and no impending crisis is ahead.

Now, I just try to problem solve how to breathe, how to swallow the medical liquid diet I’m on. Anticipate the upcoming tests and doctor appointments. Knowing because I’m a “hard stick”, I will always leave each appointment with at least 4 holes from them trying to get blood or get an IV in.

Most days, I don’t remember who was with me that day, nor who will be with me tomorrow. I do know my home is never empty. There are always people here. Aides, nurses, therapists. My “private and reserved” life I have always lived, is now an open book to all. As why I had such a hard time doing a blog because of my severe privacy.

Well, it’s time for sleep, at least I hope. Nightmares invade the precious few hours I get here and there. I don’t know if they are from the meds or the disease. Maybe both. But I have found one escape, one thing that helps me on my bad days, and that at least helps me to fall asleep – music. Music therapy! Doesn’t matter what type, as I have a very eclectic taste in music. But oh just the sound of those beautiful melodies playing through my earbuds. It’s what I wait for each night as I lay my head to sleep.

gnight 🙂

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