Warning: This post is like a journal entry and it mostly deals with pain (gonna turn the comments off on this one, hehe, I feel like it's a begging for sympathy post! but thanks for reading of course, I really appreciate all the visits and comments!). It does me a world of good getting stuff like this off my chest.
My head feels like it's been in a vise the past two days.
The back of my head has felt particularly painful, but even the rest of my head is hurting, like someone jacked up the pressure in there by hundreds of psi.
Fortunately, in the midst of this crazy headache, I have the luck of already having a doctor's appointment scheduled.
But man, the other night was really horrendous. The pain was so bad, the pain made sleep impossible for a while, but I finally got to bed around 3 in the morning. Unfortunately the pain ratcheted up a couple notches at 6am, enough to force me awake. I got an icepack out of the freezer and I lay my head down on the ice (a measure I've had to take all too often through the course of this past year). The pain was really smothering. The seeming infiniteness of this illness, the seeming eternity of it, somehow the pain took on those characteristics, and made me feel like I was choking, struggling to breath, struggling to keep my head and mind from getting crushed.
Obviously my spirit felt like shit at that moment. One of the most frightening kinds of pain is the pain that keeps you awake. Pain located in your leg or back is already bad enough, but for your head to be the source of the pain is the worst, at least for me it is. It is a pain that infuriates beyond belief, scares your soul and twists all your thoughts into thoughts of despair and death. It’s like a hell within your mind.
Lying in my bed, trying to outwait the ceaseless pain. I felt like I was reliving all those sleepless nights I’d experienced months ago, when similar bouts of pain had kept me awake, forced to contemplate the night’s darkness, night after night, against my will. I just want a respite from the pain I've already experienced all day, just for a moment. But sleep eludes. And the blank darkness is awful, it's an empty canvas where visions of my fears materialize, fears of sickness and death, fears of never recovering.
Pain during the day is sufferable. Pain in my head, at night, in the darkness? It’s probably the thing I fear the most. The sheer terror of it. Your mind is free, but the pain, and the darkness, both give monsterous qualities to all your thoughts. I'm too tired and experiencing too much pain to distract myself, unable to focus on the computer, unable to focus on the weird infomercials on tv, unable to read, unable to talk to someone. It’s very intense. The darkness. The solitude of the night. And the pain. But sometimes it isn’t even really about the pain. Sometimes the pain in itself doesn’t matter, The pain is just bullshit. But the pain, not the pain itself but what it means. Right? I dunno. The fact that there is such pain, that I can't escape it, it just seems to chop away all the progress my body has achieved. It effortlessly wipes away all my hopes and aspirations, and makes me feel like I will never be myself again. That is the worst part of the pain, the ease with which it erases my progress, my strength, and it doesn't even have to try, it just does it.
And I never see the pain coming. It must be stalking me, waiting for me to ease up and forget about the previous attack it plastered me with, waiting for me to start thinking it might not come back. That's when it strikes again. Right when I think I've rid myself of that beast.
Yeah. I’m looking back at that sleepless night, it was just the other day, but it feels like an eternity ago. I’ve recovered my confidence. I know I talked about fear and my fears, but to tell you the truth, I'm a much stronger person now. At this point of my life. I am not fearful, only in those unlucky moments of terrible pain, where I've had a burning headache for days on end, very few hours of sleep, yes, that is when I get broken down and my fears gain a tighter grip around my throat. But I make it through those moments. I always make it through. The pain always fizzles out.
Sometimes I think I should just ask for pain medecine. But that stuff is a can of worms.
Right now my head isn't hurting very much, still aching, but not painfully so. That other night was really horrible, just brought back a flood of hated memories, I sort of thought I was safe from the pain. A night like that, with ceaseless pain, like so many of those other painful nights, it shakes my confidence to the core, but only for a moment.
I hate how in those nights of pain all my dreams just vanish, my dreams of health, of working, of exercising again, they all disappear. It's hard to handle that feeling of loss, feeling that health is just a cruel illusion that I'm ceaselessly chasing, always coming up short. For no explainable reason. Makes me think of Tantalus.
To be honest, I could live with disabilities, I know I could. But if I were going to be disabled, I’d like to have clear knowledge of what I could be able to do and what I couldn’t. Parameters. Like, if I was injured in a car accident and could never walk again, I could deal with that, so long as I was told I’d probably never be able to walk again. My mind wouldn’t waste its time on dreams that were impossible, I’d focus on reality and accomplishing whatever I could with whatever abilities I had left. Well, you don't get to choose these things in life, but life is life, I fucking love it, in sickness or in health, but it's a weird thing, it can lead you down paths you'd never have imagined, that's for damn sure. And I guess my path is just filled with a hell of a lot of jumping cholla at the moment. Maybe Vegas is coming up soon.
But seriously, my prospects are good. And I know it. And that’s what makes these setbacks more difficult. It's frustrating because I feel so close, I feel like I'm on the cusp of regaining my abilities... but it’s when I have those killer headaches that last for days and days and days, it’s during those times that I feel as far away as I ever have from regaining my former abilities.
I know this all sounds depressing, but I’m just describing how I felt as I experienced the pain. In reality, I've really been upbeat lately, I've focused on my improvement, I sort of feel like things are trending upwards.
I mentioned a doctor's appointment earlier. Saw the doctor yesterday. Although I was still in the throes of this pain, I wanted to let my doctor know that I felt I was making progress with my condition. I'm still very limited, considering the fact that leaving the house is still difficult for me, that living any semblance of a real life is still daunting due to the fatigue, but those things being acknowledged, I’d be a fool to deny the big time improvement I’ve had in my condition.
The main improvement is that my mind feels a lot sharper, more alive, I'm getting lots of ideas and just feeling more creative, more like my real self, I can talk with people and not feel like I'm going to pass out. And as you have probably noticed, I talk a lot more about reading, my thoughts, I tend to write more in my posts, I tend to be a little more descriptive or what have you. I think these are all good signs.
Anyways, this time, even though the headaches somewhat traumatized my psyche, I couldn't help but feel that they were an aberration. Things are trending upward, I tried to keep telling myself. And I told the doctor how I felt these headaches I was currently experiencing seemed like an aberration, the symptoms inexplicably different from the burning headaches I was living through several months ago.
This part is what I consider the good news. The doc checked me out and it turns out I'm congested, so he said I probably had caught a cold or virus or something. Something on top of my initial illness. This is actually a big time relief. My initial illness is not setting off these terrible headaches and symptoms, they were triggered by this other thing I just caught. I didn't realize I had anything else, my symptoms are so similar to the ones I've experienced throughout this past year that I wouldn't have guessed something else was helping to cause the pain.
Thankfully he prescribed me this antihistamine thingy which has really kicked the pressure down a couple notches and really helped with the head pain. And I appreciated the conversation I had with him, he told me he was optimistic, he was very optimistic I would recover. He mentioned how he had read about several viruses, viruses he’d never heard of, but he thought they might be what was affecting me. He said my EBV levels were up, but I ventured a guess that those could be up because of those other viruses. Yup. It's a possibility. Anyways, there’s nothing to do about those other viruses either. Except to wait. Be patient, not be stressed, and focus on getting sleep so my body can recover.
Here's what I say to myself: I will never concede to this illness. I might have more pain coming my way, but I love life too much to not outlast and beat this thing.
Props to you if you read this whole thing!