Sunday, January 25, 2009

An Unwanted Journey: Day 1159 Part 2 - Suckin' it Up


One of the side-effects of gabapentin is loss of mental clarity, exactly the kind of thing that happened to me as we attempted to deal with one of my pain issues, neuropathic pain. At the time it was happening, I lamely called it spasms.

Later, in discussion with the doctor, I discovered that the professionals had a more precise term for what I was describing - pain incidents. What was happening was an instantaneous onset of intense pain in specific parts of the body. In my case, it was across the top of the legs and would last anywhere from 2 to 20 seconds. It was so intense that morphine and other pain killers had absolutely no effect. The only recompense when experiencing the pain incident was the realization that the pain would dissipate in a reasonably short period of time, even though it might well return within a few seconds in an even more intense form.

When we started to treat this kind of pain with gabapentin, we started with one pill in the morning, adding another in the evening, and then finally adding a third pill around midday. By the time we had added the third pill, I was demonstrating the loss of mental clarity which prevented me from writing coherent blog entries. I was also saying and doing things which were uncharacteristic. We cut back on the midday pill. Since then I have gradually regained some clarity and coherency in speech and writing while keeping the pain incidents at bay. A decent trade off, I think.

But today, I realized that much of the "good" I was experiencing in finding a balanced pain management plan through appropriate dosages of morphine, fentanyl, and gabapentin was "purchased" at the price of a delusion; namely, that I was getting better.

Early this morning, I talked to my wife about possibly going to church. I wanted to see friends and visit with those who had been so kind in visiting me in hospital, at home, in sending email, and in bringing food and other goodies to the house. But as she reviewed with me exactly what the implications were of trying to get dressed, get into the car, remain seated for 90 minutes or so, get downstairs to the washroom if necessary (not to mention that any facilities wouldn't be appropriate for somebody in my condition) and then visit for awhile, the dream of being better began to fall apart.

I talked then about going to the movies. Better, but still unlikely. There would still be stairs, narrow seats restricting my massive edemic thighs and the length of time required to stay in one place.

Finally, we discussed the possibility of using a cane to get inside a Starbucks to pick up a coffee, possibly even sitting down in a chair for a few minutes.

By then I was realizing just how simplistic I had been. I crawled back into the medical bed feeling the pain in just about every part of my body, letting the tears flow as the reality of my situation washed over me.

Yes, I was a little stronger. Yes, I could use the cane and walker around the house a little better than before. The pain was largely under control. But I was still restricted to the family room and a couple other rooms in the house. I can't bend over even to start pulling on my socks. Anything I drop to the floor, I can't pick up. I can't clean up after myself adequately.

Basically, I'm an invalid who sometimes pretends to be otherwise. My computer gives me some freedom and ability which I greatly treasure, but if the power adapter cable comes loose, I can't even reach to pick it up from the floor.

I'm tired of pretending it's otherwise. I know it's important to remain optimistic, to hold on to milestones, to celebrate new life and simple pleasures. I'll try to do that, I honestly will; but sometimes I just have to see things the way they are, whatever emotional pain that might entail.

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