Tuesday, April 23, 2019

My New Reality

Fifteen days ago (April 8), things seemed a little off. I was having some trouble with my coordination... getting my left side to cooperate with my right side was a challenge. Thirteen days ago (April 10), my ear felt "full". On the 11th, I felt pain behind my ear, in my jaw. The 12th, I woke up swollen, and my coordination was even worse. I went to the doctor, and he said I had an ear infection. and prescribed me antibiotics The morning of the 13th, I woke up feeling like I'd spent hours getting fillings done. The left side of my face was entirely numb. I couldn't feel my tongue. I headed straight to the clinic, and was told I have Bell's Palsy. That doctor prescribed prednisone and an antiviral.

Today is 10 days since the paralysis of Bell's set in, and it has not improved at all. I've heard countless stories from people about how their relative or friend or even they, themselves, had it, and they either turned out fine or still have effects from it years later. I hear a lot of "I'm sorry" and a lot of silence.

People don't know what to say or do. It's not a killing disease, so they figure I'm fine. They don't ask questions, either, though. I've been told it's all I talk about now, but people aren't actually listening. So I'm repeating a lot.

So I'll lay out what Bell's has meant to me here.

Pre-diagnosis, I was going to aqua fit, getting out of the house at least 3 times a week, and had a ton of energy.

Since diagnosis, I have been run down, in a new kind of pain constantly, exhausted by 8 pm every night, and not sleeping worth a crap. I stopped aqua fit because my left eye does not close, and I'm worried that the chlorinated water will cause an infection, since I can't blink it out of my eye.

Pre-diagnosis, I was losing weight at a reasonable rate, eating healthy-ish, and doing things to boost my health.

Since diagnosis, I've lost interest in food because I can't taste it. I have been struggling to eat enough, and as a result have been losing too much too fast, though some days my weight jumps up for no discernible reason.

Pre-diagnosis, I was taking steps to get my whole health back on track, including taking care of my eyes and general health.

Since diagnosis, I've been feeling like I'm scrambling at all times just to take care of my basic needs.

Pre-diagnosis, I would listen to music at all times as a way to distract me from my own thoughts.

Since diagnosis, I have to have music on softly or not at all because noise of any real volume hurts like an ice pick in my brain.

I get headaches more, and the left side of my face is tender to the touch. I feel bruised and swollen, but I'm not.

And that's almost the worst part of this. Nobody can tell anything is wrong with me until I open my mouth or close my eye. I don't have the characteristic droop.

I get the message that I shouldn't be upset about this because it is more than likely temporary and I will more than likely recover fully, but I am so tired of hearing that. I am so tired of not being allowed to have bad days. I am so tired of being told what I should and shouldn't feel.

Everybody responds to things differently, and I feel like people forget that I'm human and expect me to have superhuman responses to things.

It's not cancer. It's nothing life-threatening. But it is life-altering, and I wish people would understand that. So forgive me if, for a while, you ask me how I'm doing and I respond with, "Pretty shitty." It's about as good as I can muster right now.

1 comment:

  1. I agree that you should be upset. Be upset. Be mad. You are allowed. You are human. It's okay.