Yesterday my voice issue got worse. If I spoke too loudly, my throat would vibrate and it was NOT a good feeling. I wonder if that's what dogs feel with dog barking collars. Almost like I would get zapped if my voice level was too high. Fun.
Later afternoon my neck started feeling tight again around the collarbone area. Not sure why. Thought I'd take an aspirin again in case I was having some type of blockage, but not entirely sure this was a wise decision. Over the course of the evening, my numbness started to greatly increase, ringing in my ears returned and my body switched over to some type of alien being, one that felt like it was on earth, but wasn't supposed to be. Everything I touched caused discomfort. My entire body felt like it was hooked up to the electric current of our house wiring. If my hands or feet were to touch anything, it produced a feeling that could be likened to wrapping your fingers tight with a string to the point that you lost all feeling and the pain starts to increase. The only problem is if I move them to take the pressure off, it just creates the feeling of pressure somewhere else. I wonder if I could perfect some type of levitation device so I don't have to touch anything? Driving becomes quite an uncomfortable task, unless I find a way to not hold the steering wheel. Typing? Same thing.. pressure on the fingers. using a knife and fork to cut anything of substance is something I'd rather not repeat.
I lay in bed, wondering why God didn't just grant me a disease that was quick and had some finality to it. At least then there wouldn't be this long, drawn out suffering. I have prayed and hoped for so long .. only to have things get worse, that I don't think I hope any more. I'm probably too scared to even hope for hope. I feel like I live in a glass fish bowl. I have little fishes to take care of, which sums up my existence. Yet I have this disease which keeps me from doing much swimming or anything else. I look through the glass at the world outside the tank, and feel such pain that I cannot contribute or participate in the life outside. I am stuck. I have no choice. I feel like a prisoner. I guess the best way to describe it could be hell on earth. I feel like a shell of a person. What can I contribute? I do what I can but I'm so tired of feeling like I'm just a burden to all my caregivers. Why did God create life? Why are we here? Are we here to take, take and take some more? The anatomy of a disease should be that it kills quickly, at least then it would have some mercy. Or maybe that's the point .. to be long and tortuous. Maybe I should just be mad at Adam and Eve.
Are we built to take pain day after day? How long before your spirits are completely crushed and cannot continue? This is a life of existence. There is no flourishing. There is minimal joy. Maybe a few joyful moments when kids do something quirky or silly. But I cannot look at tomorrow.. at all. I fear what tomorrow brings, mainly because I have nothing left in me to fight anymore. I have no choice. I must continue minute by minute. I wish I had been given a choice sometimes. This feels like a nightmare in which I am not waking up. I hate looking at photos of a few years ago, before diagnosis, before any symptoms started to pop up. Those were days of true joy, I would give anything to go back to 2006. But I cannot.
So I apologize for my pity party, amidst the update of my symptoms. I'm sure I'll find a way to cope again soon. But I'm beginning to realize these feelings of loss and being beaten down have always been there, and probably will always be, even if I find new ways to suppress them, or deal with them. I am not a strong person. I never have been. I so long to just be told everything will be okay, soon. But I can't let myself go there. I will fall apart. I need to focus on what the next meal will be, resolve the next fight over lego, and figure out how I'm going to get the chores done that loom over me. Anything beyond that currently does not exist in my fishbowl. I'm just so tired of holding it all together. I so much want to just let myself fall apart and give up. I do not want to fight. But I know what that brings: more pain, despair and the inability to cope. So, against my will, I have no choice -- I must put one foot in front of the other and continue to exist. Time will not stop for me. It moves on without me. So I can only choose to stop and give up, or to keep going with this body that I did not sign up for. Without my precious children, I would not get out of bed. For my kids, I will keep going.
