Dreams to Ashes

I feel… Weak. I just avoided stepping down from a place I would have no problem with before. I used to jump to climb things for fun. I’ve been trying to walk to keep my muscle tone in my legs, but I think in turn I’m somehow making them weaker, and more numb with every passing day. The pain never ends, the numbness is almost comical. My balance has all but left me. I try not to rely too much on the pain cream I’ve obtained to soothe my nerves. The past few times I’ve gone for a walk, I beg to whatever deity that will listen that I don’t fall. 

My neurologist is non-existent. The high-rated one I tried won’t take my insurance. None in the area are any good. I’m not sure where to turn. I’m not sure who can help. I fear I may have to start using a cane soon, and what of by the end of it all? By the time I’m finally seen, will I be forced into a wheelchair? 

Knowing all the things I love, and all the dreams I had, am I okay with the idea? No. Already, only one person close to me even cares enough to know I need help, and I feel as though I’m a burden for putting all the weight on them, even though it’s out of my control. 

Everyone else insists I’m fine, or one in particular person insists they have it too, and it “isn’t as bad” as I say it is. 

I’m tired of it. I’m tired of this. I’m just tired. Sometimes I think my dreams seem sweeter. Even with my gory, bloody nightmares. At least I could run. At least I had some form of control. At least, by the end, I could always find a way out. 

I feel as though, I am watching the life I always dreamed of, burn slowly to ashes right in front of me; and no matter how many tears I cry, the fire won’t go out.

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Changes

A lot of things happen. Some of them good, some of them amazing, and other times it’s bad… Or, there’s occasions where it’s a mix of all 3 of those things. 

If I wrote every negative word I associated myself with on my body, I would be covered. Completely covered, and overlapping. Sometimes it’s the words we let ourselves believe that harm us most. Sometimes changes force those words to the front of our minds, and they’re screaming louder than they ever been because at one point, they were completely silent – just for a little while. 

I wonder how different those words would be if I just had a harder heart or thicker skin. I wonder why I let other people pull those words to the surface. No, I’m not blaming anyone. At least, anyone but myself. I have myself to blame. 
Everything was amazing. I could smile for a while. I felt absolutely perfect. But all good things must end, and that is why I am awake at 12:30am writing this and feeling sorry for myself. I wish I had hope tomorrow will be different. Or the next day. But life isn’t the dreams I once believed were my future. Because, sometimes you end up bringing people into the tangled, grueling mess that is your life, and it’s complicated. 

I hope I, and we, get past this. I hope I can go back to smiling again, with those voices locked away. I hope… They smile at me and join me in my happiness. 

Until then…

Who Am I?

I was never very “fit” in the sense I was never a skinny little size 2. But I had great physical strength. At 10, I could carry about 100 pounds fairly easily. I spent a lot of time outside and loved to run. I would catch just about every illness there was and scrape my knees just as much, but I would heal quickly and everything was fine. 

When people define me, they say strength. But, I don’t think they think of emotional strength. They mean physical strength. Now that that has been fading as far as my legs go, which was the strongest part of me. I used to be able to lift my boyfriend. Now it’s hard to carry two frozen lasagnas to the stove, because my legs wobble and it’s like I’m wearing the cursed red dancing shoes. 

Unfortunately, it’s a comical jig that’s being played by a jester. Falling is usually inevitable. 

With this definition that I’ve believed, for all my life, of this strength… I feel as though I am losing myself; losing who I am. I feel as though, as the things I am expected to do throughout the day become harder to deal with, I don’t know who I think I am anymore. 

Perhaps it’s my pride stinking me like a cold whip. 

I don’t think anyone believes I am in pain. I don’t think they realize it. 
In other news, my appointment with the Neuro-Bozo was unfruitful. Go figure. I tried to call another neurologist, one that’s supposed to be much better. I haven’t gotten a call back yet, but I hope I will soon.

Not Sure

Still fighting through this. I passed out in the vehicle. No warning, just passed out. Based on where I was at the time to where I finally woke up, I would say it lasted about 30 minutes. Now, awake, I feel very disoriented, dizzy, like the world is unreal. I’ve had trouble walking the past few days thanks to being unable to feel them, but this is worse. 

Upon first waking up, I was having a hard time believing where I was, or that I even existed. I still can’t feel my legs, and in the foggy confusion, I found that strange. I feel lathargic. A little nauseated. I’m not sure what happened, or what to do. I’m not sure what I’m supposed to do if I can’t shake this. 

Also, I noticed a weird thing. My right pupil doesn’t shrink and stay in reacting to light like my left one does. My right starts to shrink, grows, and tries to shrink again. If anyone has any ideas, I would love to hear them.

Face of Me

I express myself through many ways. Traditionally – with my face. And through my art or fashion. Through photography and through my laughter and tears. Through my kindness. Reminding myself that no matter how dark it is, there has to be moonlight somewhere. The single tiniest positive in a sea of negativity is the thread to hold on through the storm. I’m trying to wrap that sucker around my waist and hold on. I hope you are too.

Irony

Leg paralysis. The new inability to feel anything at all from mid-thigh down while I’m still able to walk – with difficulty. The mobility in my legs decreasing seemingly every day. I can no longer pick up 50 pounds without using my back, and walking around carrying it must look absolutely comical.

 

I’m trying to gather music to listen to in order to keep my hopes up, and keep me from falling into a deep depression over this entire situation. One of the songs I recently listened to from that playlist?

One Step At A Time by Jordin Sparks.

A little, quipy voice that both mocks me and makes me laugh happened to point out the irony of it. It also has pointed out how I’ve always wanted to do Kickboxing, and Aerial Silks. Hmm… Friend or foe?

Looking into ourselves, sometimes we’ll never know exactly which we are until every possible scenario presents itself. But, in this particular moment, I find this harsh irony hilarious. I think I’ll high-five myself.

There, we’re great buds.

I’ll update soon! My appointment with whom I have named “Neuro-Bozo” is on Tuesday.

Until then!!!

Trouble

Today, I can already tell is going to be a problem. Last night I couldn’t get to sleep no matter how hard I tried because I was in so much pain. This morning, my legs still hurt, but are wobbly, yet stiff and heavy feeling. 

Yesterday I was tripping through the store. Things I progressing, and I don’t like it. It makes me worry that my next “episode” -as my mother calls it- might be permanent. 

I can no longer feel the ground I walk on at all, even when I attempt to stomp my feet. Down here in the boonies, that’s quite dangerous. My foot got caught in a hole recently and I had to use mostly my arms to get it loose. I was walking my big dog, who helped by sitting next to me and waiting. I think he thinks we can help each other through our “illnesses” as I see many people call polyneuropathy. 

My pooch might have epilepsy. He had a grand maul seizure once and I’ve been giving him medicine every day and night. Not one since, but he seems to be concerned with everything after the incident.

Next week I go to see the incompetent doctor my primary sent me to once again, to gain any results and papers I can. Then, I will be calling a well-rated neurologist in my usual doctor-stop of 3 hours away. 
I’ve done research both online and in a few books. I plan on obtaining more when I get the chance. These doctors aren’t going to tell me that nothing is wrong. I’m sick of hearing it. I’m struggling every day just to hope I can still move in the morning. If that was them, they would be raving at anyone who would listen and demanding something for it, and then compensation for the length of time to get it. 

How many times do people have to console me from the ground before someone admits something is wrong? Is it that difficult? I didn’t even know I had polyneuropathy until I kept reading in my records “has history of” and got curious. Now, on a race to figure out when, why and how, many doctors are going to be finding me as a demanding annoyance. A ghost that constantly calls and pokes and checks up on every little thing. 

Doctor’s today need to learn that they work for the patient, not the other way around. Do not hold back information, do not say nothing is wrong just because you don’t know how to deal with it or don’t want to. It’s about the patient’s health. Not your paycheck. Get over it.