Life is Pain

For those living with chronic medical conditions, setbacks are always though. They serve to remind us that no matter how well-controlled our symptoms are, we won't ever be "cured" of our conditions. Last week, I experienced several visitations by my previous life; the one I had before coming to Madison. I was forced to choose between accepting one fate and pressing on to forge another from the ashes of its less desirable twin.

Following all the medical appointments and tests I've had to endure lately, I returned to the lab (finally) free from interruptions to pursue my research at full tilt. Slowly, I began to notice changes. Beginning at around 2pm each day, within an hour of eating lunch, a gnawing ache settled into the depths of my abdomen and slowly began to grow in intensity. Two hours later, the pain peaked and consumed nearly all of my attention, making it almost impossible to focus on my work. Over the next 4 hours, it would fade until it was gone, just after I arrived home. At first, I thought the pain clinic I went to had made some sort of mistake during the pump refill I'd had just the previous week. They reduced the concentration of Dilaudid I was receiving, but not the overall daily dose. This means that my dose should have been the same but that I would come more frequently for refills (a measure meant to preserve the drug's potency and reduce the risk for spinal granulomas). I suspected that perhaps a miscalculation was introduced during the telemetry stage of the refill and that my pump simply required reprogramming.

However, when I went back to the clinic, medical staff did not find any errors and opted to simply introduce a bolus dose that to be given at 1pm each day (before the pain had an opportunity to take root). As it turned out, they did the right thing. You see, for the first time since starting in the lab, I was able to work at full capacity. I was on my feet more, at the bench longer, and greater physical demands were being placed on my body each day. Most people would simply begin to feel tired under these circumstances but in me (no longer accustomed to working 60+ hours per week), damaged nerves rebelled once I pushed past the threshold and they were screaming for relief. After the bolus dose was added, I was able to work an additional 6 hours before my pain returned. Typically, by that time of day, I have either returned home or am at least in transit. Certainly, this means I won't be able to work later into the evenings without a second bolus but still, it's an improvement over what I would otherwise have been able to do.

\Most of the time, I don't think about my pain. Over the last few years (since getting my pump) I've worked hard to create a new foundation for my personal identity; one divorced from my identification as a chronic pain patient. Since I now spend the majority of my time being "Heather the scientist" and not "Heather the sick person", I have begun to settle into a role which would have me behave as a person who does not have chronic pain. I was lulled into a false sense of security so to speak, and forgot my limitations.

There is also a part of me that feels like I still have something to prove. I know from past experience that there are those within my chosen profession who believe that people like me have no place in science and that I was meant to subsist on disability for the rest of my life. While it is true that most chronic pain patients find themselves rendered unable to work at some point, most of those people are in that situation because their pain is not well-controlled.

There is a pervasive philosophy in medicine, no matter how misguided and destructive it seems, that we should "learn to live with our pain" since we aren't ever going to be cured, we should do our best to accept things the way they are and try to go on living our lives in their current state. Trust me when I say that a life without purpose is no life at all. There is no quality of life for those who suffer with pain so crippling that it prevents them from working.