Ouch to the Nth Degree

On Saturday, I felt terrible but I knew I'd feel better after the beer tasting that night. My head ached and was terribly touch sensitive. The good news was that beer tastings always made me feel better. This time, I felt much better after the tasting. In fact, I felt well enough to drink a lot of water and go right to bed. I fell asleep in bed and still felt better but I never sleep very long after drinking. It was 2-3 hours this time but I had slept during the day on Saturday so there were no worries. I woke up feeling just fine and launched into working on a writing project.

My head and neck started to hurt while this was going on. I kept telling myself that I would go back to bed in a few more minutes. Finally, my world started to cave in. My neck hurt and hurt badly like something was swelling in it and the tooth pain that tells me how far over the line I've gone went from zero to screaming in about two seconds. My head felt like an egg shell covered with nerves where someone had turned it to powder holding its form because of the membrane inside. However, having anything touch my head brought up hideous pain.

When I had my first Chiari brain surgery, the surgeon told me that he had to cut and reattach 30 muscle groups. My neck had about that much strength and the pain was every bit as bad. I was upstairs and all my medication was downstairs. I couldn't help but lie there in bed and moan constantly. At first, I was afraid to wake up Melissa but then I was afraid I couldn't.

I got serious about it and woke her up. After a few seconds of getting from dead asleep to fully awake, she started helping. Did I need medication? Yes. Did I need something to take it with? Yes. My beloved stayed there in bed with me moving as little as possible. I put on my neck brace at her suggestion and it helped me be able to lie there with my head on a pillow. We thought back to the days when things were this out of control frequently.

That helped us remember an icepack for the places where it felt as though the shell membrane of my skull had broken. I used her voice as my initial focus for a calming trance. Amazingly, I was able to breathe well enough after an hour or so of her loving care that I fell back on breathing in and out. Eventually, I made it back to sleep and woke up with a theory. I'm in some sort of sleep deprivation situation.

For a while, I was feeling as if I could accomplish anything. The flu had forced my life to a snail's pace and so I surged ahead when it was over. I was writing and playing "MLB:08" on the PS3 and I was getting important things done. The main problem was my complete failure to rest. Forcing myself into a high state of concentration to hit the fastball but not chase the breaking ball was not rest. The fact that I wasn't quite good enough for the game but was getting closer every day didn't help. I'm as competitive as the next fellow.

The fact that my sports games were the closest I could come to watching sports on TV doesn't help at all. In this fevered pitch of having to be doing something constantly, I was missing doses of medication.

As usual, I have a solution for this problem and it is organization. I need to monitor my medication doses more closely but that's the easy part. What I need more is my rest. I need to organize time each day for rest and meditation. Then there has to be another big block put aside for sleep. I can't ever improve the insomnia without setting aside time to sleep if I'm able.

There are additional technical problems but I have a pain doc appointment today. My pain doc is a genius at getting things done. His solutions will probably be far too type A for me but I can adapt them. Any improvement is better than the current situation by definition.

Tragic News

My sickie buddy is dead. Lois was only 63 years old according to Melissa. Her death was not entirely unexpected but the timing was. We thought she had won her second round against lung cancer. First, we were told that the lung cancer would be fatal because her heart was too damaged to try radiation. Next, we were told that a doctor had tried radiation, she had made it and that the cancer was gone. I expected to see her again someday despite my declaration that I'm too sick to make the trip to New York.

Melissa took the phone call and her reaction told me that someone was dead. I feared for her mother and sister but not Lois who was supposed to be on the mend. That's when Melissa asked about her Uncle George and I knew. Uncle George meant that it had to be Lois, his wife since shortly before my wedding. She was sick and expected to die then, too. They hurried their wedding plans because she was so sick then but she rallied and beat lung cancer.

She never stopped being frail so we understood each other. When I visited with her, she kept our surroundings calm and quiet. She would always give me a hug but she never squeezed because she knew it would hurt. She didn't just believe it would hurt but she knew from experience. Trying to manage my own illness over the years made me appreciate her all the more. I never asked her when she was going to get better or any other intrusive health questions and she did the same for me.

Uncle George must be beyond words. I know that I would be. My worst fear is losing Melissa and I can imagine it was the same for him. Now, that worst fear has taken place and there's nothing I can do about it. I guess I'm lucky in a way. (I'm lucky in a lot of ways like having Melissa.) Before this long illness, I took the blame for everything around me. I would have made myself personally responsible for curing George's grief despite knowing better. Grief isn't like some cut that just needs a band-aid. Grief is more like a chronic pain disease. After he gets through these first terrible days and the worse ones that might follow, he'll find a way to manage his grief. If he's incredibly strong, he might even go on with his life. My money is on George.

I haven't even come close to expressing how I feel but I suppose I'll get to that eventually. This makes one fewer person in the world who understands if I may be completely selfish for now.

Not Dead Yet! (Part 1)

There's a line from Monty Python that's so worth stealing that Ricky Buchanan, fellow sickie of Australia, already stole it to be the title of her late lamented online journal. Thankfully, it's also true although it seemed a little closer than I would have liked for a while. In addition to my chronic pain, fatigue and overall icky illness issues, I managed to catch the flu.

It struck like a bolt from the blue sky a couple of Sundays ago. I was playing a PS3 game when exhaustion sent me a warning to shut it all down right then and there. I needed to go to bed. While I was shutting things down, I was hit with such violent shaking that it triggered the headaches I only get after the very worse coughs and sneezes. These are what I imagine whiplash would be like.

I made it up the stairs where Melissa was in bed but not yet asleep thankfully. I called out to her in a panic that I couldn't stop shaking and about the pain it had triggered. She asked if I were cold which should have been a simple enough question but I didn't know. If I were cold, it would have been the worst cold I'd felt in my entire life. After I dove under the covers wearing all of my clothes, she followed and brought along her heating pad. I still shivered for an hour after the sweat started pouring out. I spent the entire next day in bed afraid to venture out until Melissa got home because I might feel that cold again.

She got home shortly after I had gotten brave enough to venture down to the couch away from my ultra-boring bedroom with Gatorade/Powerade. This stuff would end up providing nearly all of my calories for about a week. Food disgusted me except in the smallest quantities but the now sugar free sports drinks tasted good.

I spent a week in a state of being "almost better." It felt as if I needed to get up and do things to "earn my oxygen" yet I found myself staggering back to the couch a few minutes later each time. Within a few days, I found this odd happy medium. There was clear evidence right before me that I was too sick to do anything but cope so I coped. I liked the feeling of knowing my purpose in life. That purpose was to survive and try to feel the best I could feel. Seems like there's a lesson in there somewhere but I'm starting to wear out again already.

There will be more soon but I wanted you to know that I haven't given up.