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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Life

Life is an unpredictable whirlwind that picks up and throws anything it wants at you at any given time. Just when you think you’ve just about balanced out your physical and emotional hurdles, it throws something new at you. 

You like to think that the breeze is finally light, the air is nice and crisp and maybe things have settled. And then suddenly a cow is thrown past you and you’re sucked into the vortex. 

Please tell me that the other things I’ve thought to have finally gotten through in my life won’t come back to whollop me in the face either! Does anything you fix stay the way you need it to? 

The new aggravations being hurled at you, when the old ones suddenly come at your back, you end up spiraling down and it feels as if you’ll never stop. 

This is my life now. I think I’m growing a phobia of being happy. When I’m happy, something happens. When I think I’ve got something to hold on to, it’s yanked away. When I think I’ve sewed up all of the wounds, the stitching comes lose. 

I know I’m not alone in this. Join me on this ride called life. We can have tea and cookies in the whirlwind. 

Until then…

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…

Feeling Down

There have been a lot of personal things stacking up to add to my increasing health issues. My dog had another seizure, though thankfully not as bad as the first. I had to cut someone I considered a best friend from my life. My life is not, by any means, going according to plan… My relationship has gotten better in some big ways, but worse in some small ways that eat away at my insides like a virus I can’t shake. 

Sometimes I question why this all came to be. Why me? Why them? Why this? 

The other day I simply came to the realization that I will, in fact, be in a wheelchair at some point of my life. I’m already questioning if I need a cane already. My 21st birthday is in a few days, at the beginning of next month. I don’t see any celebrating happening. Not for me. 

Today I learned the extent of being unable to feel sensation in my legs. A large piece of glass was evidently on my shoe for at least half the day. I, questioning why I felt so off kilter, was confused by it all until I took my shoes off and found it. I had to put gauze and tape on the wound, as it would not stop bleeding. I can’t feel the pain, but the wound is there anyway. 

I’m hoping to find help. I need it. 

Until then…

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.

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.

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.