28 Sept. 2010

Unsettling would be a good word to describe the last four days.

Things have just been screwy. I'm not sleeping well (once I actually get to sleep); my appetite has been up and down; my headache has gone from manageable to painful just about every day; the nausea is completely unpredictable, and the malaise has been swinging between minimal and severe. Ick.

The insomnia I have--a common S/S in advanced PCKD patients--is getting a bit worse. I used to average about seven hours of sleep just a few months ago. Now, I'm lucky to get five good, quality hours per day. No matter how tied I am, getting to sleep is difficult, at best. Just yesterday I was laying down for an hour before drifting off; and this after being awake for 22 hours (before I laid down). So that you understand how frustrating this is for me, my usual pattern of falling asleep (before the PCKD) was lay down and be out within seconds of my head hitting the pillow. For me, insomnia was waiting a whole five minutes to fall asleep. No kidding.
Additionally, my sleep has been less and less restful. Most days I awaken feeling like I haven't had any sleep at all.

When I say that my appetite has been up and down, I mean to say that it has gone from [my new normal of] 2.5 cups/day to as much as six cups, then down to about 1.5 cups. No pattern or regularity. On the days that I'm actually hungrier than usual I will eat more. Other days the nausea is so bad that almost nothing gets past my lips.

As stated at the beginning of this post, my now 10.5 month headache has been swinging back and forth as well. However, when it gets painful, it has been doing so quicker than usual. The last few days it has increased from a six to an eight seemingly in the blink of an eye. I can usually manage the headache (somewhat) when I feel it becoming stronger. These last few days I have not had that opportunity as it increases immediately in its intensity; which is definitely different. I will keep an eye on this change. If the headache becomes alarmingly severe (at a 10), I'll likely have to go to the ER. One of the first things I was told about this disease is that I'll experience a headache unlike anything I've ever had. Well, I've been at a 10 (on my scale. This includes pain induced blackouts, vomiting and pain so severe you literally can't think.) with my TMD headaches, so I would expect it to be even worse than that. I can hardly wait... (insert appropriate facetious and sarcastic look!)

The nausea these past few days has also not fit the [now] established pattern. Aside from the one day that I not only felt hungry, but also ate (!), the nausea has gone from normal to overwhelming within two or three minutes. No rhyme or reason...it just is. I've taken more anti-emetic the last four days than I have over the previous two weeks. Nasty stuff. Not much fun.

Finally, the malaise I've been experiencing has also seemed to increase for no apparent reason. For instance, I've been meaning to write on this blog for three days. I've even been on it, ready to type, and have decided I just wasn't up for it. I literally couldn't gather the oomph to get it done. I'm doing less housework from day to day, less studying of interests, have done zero creative writing for weeks, and have abandoned my music composition all together. It actually seems overwhelming for some reason. However, I have times like right now when everything snaps back into focus and I can write everything I need, and study, and continue writing a short story I'm working on for a friend of mine. I'll get as much done as I can because it may be a while before I feel like doing so again. Let's hope that's not the case!

I think I've told you everything I had in mind...at least as far as my terrible memory can remember! :o)

Looking forward to a few better days!

Good Health to all!

ScottW