These days when I talk to people during normal waking hours, I think I come across as a bit of an airhead. I might tell you that I didn’t sleep well last night, and perhaps you’d ask why. I probably tell you that I can’t remember. Is that what I said? I honestly can’t remember what reason I gave you, but I really do think that most of the time I have no idea why I’m not sleeping because I can’t remember. Add to my already foggy brain the fact that I’m exhausted because of insomnia, and I can’t imagine any other response mumbling past my lips. Most of the time, I feel swampy. I’ve been using the term “swamped” in reference to the amount of schoolwork I have this semester, but I think it’s an appropriate way to describe my overall state of being. It’s as if I am trudging through thick, murky sludge that doesn’t even resemble water, and my feet are being sucked into the earth floor so that with every step you hear a loud slurp beforehand and I wonder if my leg will be strong enough this time to break the quicksand’s hold. Somehow I manage to pull my foot free and take the next step, but the time between steps is gradually becoming longer and I’m just waiting for my body to give out entirely and succumb to the suction that is pulling me under inch by inch.
I am awake now. This is one of those countless nights passed with eyes wide barely open, even the dim lamplight far too bright for my sensitive pupils. I know why I cannot sleep, and I know why I couldn’t sleep that night you asked about. It’s the pain. The aching, throbbing, occasionally shooting pain. In my head, in my neck, in my shoulders. In my chest, my arms, my stomach, my hips, my legs, my feet, my hands, my fingers. Oh, the pervasive pain – not enough to make me feel a trip to the ER is warranted, but just enough to make the transition from exhaustion into the sweet, blissful slumber I so crave impossible.
And I’m sleepwalking to the medicine cabinet in the bathroom to find some aspirin to dull the aching, and I swallow a glass of water in three gulps, noticing as I do the bulging in my neck and I wonder. Am I going to die? Because this feels like that slow, painful death that villains are always saving for heroes. Why can’t I be the one who gets the quick, painless death if that is what all of this will amount to in the end?
And I realize that I want to live, and then I think about how I am living and I wonder why I want to live. I want to live for all of the things I love: my son, my family, my friends, my cats, music, singing, art, creativity, drawing, loving, caring, reading, writing, watching, observing, experiencing. I want to live for all of the things I have yet to try: painting, photography, skiing, camping, performing, becoming. My current state of slogging through the swamplands does not allow for those things that I love. I haven’t the energy for them. I’m in too much pain to consider them. I’m too exhausted to enjoy them.
I remember happiness. I have mental photographs of many hours, days, weeks, years made up of fun. I have memories of creating the fun even when the task at hand was less than exciting, and not just for myself. I turned things into fun or at least I would make people laugh. All I wanted, all I’ve ever really wanted was for everyone to have a good time, to enjoy each other’s company, no matter the situation we found ourselves in, be it work, play, or love. I’ve lost that capability. The energy required to have fun is more than my body can handle.
I apologize if this is depressing. It’s not meant to be, it’s really just meant as somewhat of an explanation. But the truth is depressing right now, and I can only hope that in time, this will just be another inspirational story of someone who had a debilitating illness but was finally correctly diagnosed and treated for the condition and got well, TA-DA! Complete one eighty in six months or less. A girl can dream, right?
I want to also apologize for my irritability, my disinterest, my exhaustion, and on and on. I want this to get better go away as much as the next guy. Now I am wondering… who will be around when the smoke clears?
Here are some photos of me then and now. Then being when I was healthy (I think) and now when I am not. Besides the obvious swollen facial features, I have also gained about 50 pounds, just in the last year. NOT NORMAL!
This is what I looked like in ’05 or ’06. This is fairly normal, what I *should* look like.
This was about a year or two ago, sometime in 2010. Notice the swelling around my eyes and how large my nose looks.
This one is 2006. Again, this is a typical photo of *normal* me.
And the most current: 2012. This is what I look like now. Puffy face, swollen nose and eyes, swollen neck. You can see my coloring is terrible. Ugh. I want it to go away.