Pain and Emotions

My legs have been giving me a lot of pain lately. They still don’t respond to touch, or heat, or cold. But they seem to make their own pain, even though they’re numb. 

I try my best not to show my pain, but I still have to try to limit myself. No one seems to understand this, and it’s taking a toll on my emotional and mental health. 

They expect me to do just as I did before, but it’s just not possible. Trying to ignore and push away my condition does not help. I need to accept, and try to work my way around my life so that I can live it. 

This, in itself, is a very unpopular opinion. Mostly according to my mother, I shouldn’t “give in” to my condition. Ever since I got my cane, that is a phrase I hear often, between the scoffs and the eye rolls and being told I should do things I am unable, then being asked in a nasty tone why I can’t.

I learned that even just holding off getting my cane has done more damage than good for me. The fact that the people around me would rather me be in more pain than get what I need to ease it just because they think somehow that means I’ve “given up” speaks volumes. 

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The Shakes

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…

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.

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.

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.

Maybe It’s Mind Games

My leg issue continues getting worse. Every day is a struggle, that I have to push through. Not because I want to, but rather that I’m forced to. It’s a wonder I don’t talk about my issues anymore. 

I’ve been tripping a lot. My legs hurt like hell, like I’m wearing thigh-high socks surrounded by constricting thorns that get tighter and tighter. It’s harder to walk. I get tired easily. 

I’m terrified of falling in a public place and not being able to move. I’m terrified of taking showers, because I’ve fallen before. I shake every time the shower head spray comes on. Showers used to be my happy place. 
My boyfriend got me a sketch book and pencils because I desperately needed an outlet and my niece and nephew took hold of my old sketchbook, and used all my paints and clay. It’s been better since I’ve drawn, and it’s been a long time since I have been able to draw well. 

My emotions has been more stable, but I’ve noticed more things that I can’t tell is coincidence or an omen. Everywhere I’ve looked lately -yes, everywhere!- I have seen videos or articles or just in daily life many issues with people and their legs. I have seen more wheelchairs and motorized wheelchairs in these 2 days than I have in my entire lifetime. 

Coincidence or omen? I’m not sure, and it worries me to ever find out.

Yesterday

So, let’s talk about yesterday. 

I went to this supposed neurologist. I get there, and he checks my reflexes and has me walk a short distance and then tells me “tests” are normal. Also, tells me that “there is nothing that can only last hours and stop.” 

Haha, no, bub. There is, I’ve read about numerous things. Amongst these “tests” he put a vibration tool on my legs and on my way out, my legs start getting sore. Like electricity was zapping through my veins. It continues to get worse until I was in tears and swallowing screams. My concerned boyfriend then pointed out that my legs were exceptionally pale, but my toes were bright red. Almost as if all my blood rushed to the tips of my toes and stayed there. 

Since then, the pain has died down a bit, but it continues to get more painful to walk. Every step I take feels like my bones are breaking crack by crack. 

I looked up this “nuerologist” on Health Grades. He had a rating of 2 stars, and according to many reviews, he refuses to touch men. Which is why I am very glad my boyfriend came back with me. 

He was rude, impatient, and didn’t like questions.

I have my nerve conduction and an MRI on my spine tomorrow morning, but something tells me that I’ll be ending up finding somewhere else again. 
If anyone has any idea what specifically could cause my issue, thoughts would be highly appreciated.
Temporary paralysis, numbness, inability to move or feel my legs mid-thigh down. No senses. No movement. Legs pale and ice cold.

When I am able to move again, a tingling feeling happens in my legs and after about 10 minutes I can move them slowly, but weakly again. Longest episode being 9 hours as of date.

Now with pain when I walk and increasing.