Symptom Diary...

My primary care doctor instructed me to keep a diary of symptoms and medications and improvements vs getting worse... I started it, only to realize throughout the very first entry that I would be writing all day long... Symptoms to me are feelings in your body that come and go, the bolded italicized word there being GO... But what if they do not go so quickly? What is it then but a lifestyle that I must deal with day in and day out? If the weakness is there everyday, all day, worse after doing more, but still there? This morning, like every morning for the last 4 months I woke up in pain. I cannot remember a morning I didn't feel before I cracked open my eyelids... You know, during that time before you are really awake, when you are aware of your surroundings and the noise of the kids or the heater or the dog outside. During that time when normal people are getting their bearings straight and realizing the day ahead of them, I am praying out right. Starting off the day asking God for relief for the pain I feel already, that it not be an indicator of what my day will be. The physical act of getting out of bed is so very difficult. I used to be able to just pop right up out of bed, no big deal, right? Not anymore. It takes every bit of strength I have to get moving, so where is the reserve for the end of the day? The infamous "second wind"? So would I say the meds are working? Well, if I don't do anything, sure. But if I need to function during the day like any normal adult, then no. How do you learn to live with this? Adapt to move on with your life? How do you move on? How can you move on if each morning greets you with a taste of the rest of your day? Then you are confronted with the outward view of being "grumpy" so you feel forced to bottle it all inside, all your weakness, all your pain, the halos in front of your eyes, the trouble seeing, you can't make it known that you are struggling because then you are viewed as grumpy or not trying hard enough. It doesn't count that you use every bit of what reserve you have left to complete about half of what a normal adult would. That doesn't make a bit of difference. Or that there is a reason you are not working, that the doctors have advised you not to drive right now... Those things are forgotten and once again it is expected that you get back to it, or so to speak...

What do you do when sweeping leaves you breathless but leaving the pile to pick up later when you get your breath back looks like you are taking shortcuts and being lazy? Most people who have been where I am for many many years say "forget it! Leave it and who cares what they think!"

So, for the doctors sake and for the people who think I am just being lazy or grumpy, here is how I feel today:
I woke up and my arms could not push me up to sit up on the bed. I stood up and my legs felt like jello and the muscles cramped. All night and so far all morning various muscles have twitched and fluttered all on their own, with no control of my own. It's really quite annoying. It reminds me of a jello mold with a wave passing through it. I'm so very cold all the time. Pins and needles, tingling, the usual annoying parts... Headache...
Pain, well we wont even go there because it is so bad that focusing on it will take away from everything else I am feeling. It has already. People who are close to me focus on the pain and forget that it's not just about pain. Here's an example: if you made a fist and squeezed as hard as you could you would leave fingernail marks in your hands, maybe even break some skin. When I do the same right now I can barely get my fist to close all the way... Trying to swallow the many supplements and medications this morning was like shoving a pill down a dogs throat. I choked and sputtered and forced them down... Not having much of a gag reflex left, I choke on every other swallow. It feels like panicking and drowning every time it goes down the wrong pipe... Oh, and the memory.... Shall we say screwed up?? I receive frustration and deep sighs when I have to ask over and over what is going on during a day, or a schedule for the week, or can't remember even what I was doing that very moment... Thankfully I have excellent and patient instructors who have been very lenient in my late work being handed in. According to her I make up for it in quality. I can't remember what I was going to say next. It's hard not to bite back when criticism is what I am faced with. Especially when I have watched myself, as an outside spectator, fall far beyond where I ever dreamed I would be. It hurts. I certainly didn't do it on purpose. And facing the mountain I have to daily climb back up to get anywhere close to where I want to be is a shivering thought. I am worn to the nub, like a sand smoothed and rubbed by the surf, only it has not added to my beauty and desired qualities.
Some people say I am having a hard time dealing with it, others say I am giving in to it, not fighting hard enough, and yet others dont really care as long as I don't expose them to it. But what about what I say? Does that matter?