Today I have extreme weakness in my legs that has lasted a full 12 hours now. It is even difficult with my cane. Those in my neuropathy groups I’m in tell me to go to the ER. I don’t see what good it would do since they won’t do anything about my sudden temporary paralysis, either. I’ll get stuck in a hospital overnight or longer for nothing but frustration. I refuse.
Have you ever witnessed the moment you realize your dreams have shattered? Have you ever been able to hear the very moment each crack is placed until it simply explodes in your mind’s eye?
Lately, I have come to the conclusion wishing is for children. Dreams are what kept our hearts warm, our lives hopeful. Most recently, I’ve begun feeling quite down with myself. Perhaps it’s due to the realization I’ve never had a fruitful dream in my life, all my wishes ungranted, and yet, here I am. A mere shell of myself in regards to whom I thought I was; a charming, loud and strong girl that could take on just about anything and come out on top.
Alas, that’s not who I am, perhaps not even who I was. I believe we all, in human nature, are weak. We’ll pull up our strengths just long enough to hold out for the next obstacle, but should the tower be too large to climb, we crumble at the stone at our feet.
I realized this when I found the oldest yearbook I have of myself. In kindergarten, I was bullied, but happy. I didn’t pay much mind to their words or actions then, and I stood up for those who had it even worse than I. Now, as the tables have turned, I am met with silence and myself. The cane I walk with is the most I hear, and though the one person I love most tries, they cannot understand, and there are still issues therein between us we need to work out.
Why am I writing this? Because I looked at the yearbook picture of a hopeful girl with big dreams and lots of guts and wondered if she would cry to see me now. Would she look onto her future self with disappointment and tears in her eyes? I no longer can carry large, heavy things, I have to walk with a cane inside the house, I often forget things now and am in constant pain that rides up to excruciating waves without warning. Knowing that I might fall and not get back up, what would little me think? I look at this picture and wonder…
A “fun” thing my legs have been doing lately is shaking like crazy. Painfully. I’m not sure what triggers it, but it continues getting worse as the days go by…
Hoping to get in to see a neurologist soon…
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.
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.
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.
My nightmare last night was strange to me to say the least…
It started out with me being surrounded by children (all not mine, I’d like to add) and another woman, who was helping. We were all outside this large building star gazing and watching fireworks.
Suddenly, in the street, I see a dark figure. I go over to tell the woman about it, and the man came over insisting he was two of the children’s father. The woman was on the phone, trying to get a hold of the police. Suddenly, more men showed up and started yelling that they get off the phone. I grab a nearby blunt object and tell the children to run inside and lock the doors and windows, and not to look outside.
I remember hitting the man claiming to be a father with the blunt object once before I was scooped up and carried inside. It wasn’t someone I didn’t know, and I was calm, but when I heard the other men yell to let them in, I realized I couldn’t move my legs. The kids huddled around me and clung on, we were in the basement and I heard faint sirens. Then I heard a crash, and I forced myself awake.
When I woke up, it was more like tremors than shaking. I’m still trying to catch my breath. I still feel a little scared.
And it doesn’t help today is the anniversary of a loved one’s death…
But what could this nightmare mean?