Taking Risks With My Health

Taking Risks With My Health
© 2009 Misha BearWoman Metzler1

A shift has occurred for me in my end of life process. I reached the point where it became reasonable for me to consider taking a medication that carries with it a significant chance of very undesirable side effects. I have come to the place where, unless something interrupts the continuing and apparently inexorable decline of my condition, I will remain in unrelenting pain and will need the use of an electric wheelchair pretty darn soon.2

This is the first essay in this sequence where writing about my process seems more like a chore and less of a heart-desired pro-action choice. I still want to share, to reveal. Yet I feel my process has become more personal, and I hesitate to share it widely. My commitment to documenting my process and offering it as a voice for the uncountable unheard others is what brought me to my keyboard.3

On Thursday (three days ago) I went for my first appointment with a physical therapist to help me with my fibromyaligic pain. To discover if there were home exercises I could do (preferably while lying in bed) that might (1) help increase my physical capacity/functioning (or at least slow the loss of it) and/or (2) help reduce some of my pain (thereby reducing the amount of analgesics I need to use). I was shown four exercises, three of which include light resistance and one of which is purely for stretching. I asked for another one for my hips and sacroiliac joints (in the pelvic girdle, where the spine and the pelvic bones meet) (these are my areas of greatest pain), so that gave me two stretches.4

When I was in my late teens and early twenties, I was very physically active. I trained with weights, performed aerobic and flexibility training, was on my way toward achieving a black belt in Tae Kwon Do. I had advanced to the level of body sculpting where I was in training to begin bodybuilding competition. So I know all about the “no pain, no gain” philosophy, exercise physiology, and the pleasures and experience of physical training where one has to learn how to work within the zone of not-yet-overexertion in order to optimize results. Now I am learning—by necessity—of a different way of training. It’s called, “some movement is important, but whatever you do, don’t overdo it or it’ll only get worse.”5

Imagine this: three to five repetitions of each of five exercises per day. Don’t do any on days when you feel drained by ordinary exertions such as going to the bathroom or standing at the sink to wash a few dishes. Lay on the bed. With a one pound weight in each hand (or a can of vegetables), begin with your arms bent at the elbows. Slowly press the weights upward towards the ceiling, then slowly lower your arms back to the bed. Repeat for a total of three to five times. That’s it. That’s one exercise. Remember to not overdo it, now. There are two more exercises to do, and then two stretches.6

For the stretches, move only to the place where you begin to feel tension in the muscles. Do not “move into the stretch;” stay at that level of intensity, then release. Repeat 3-5 times. Compare that with a split-day intensive conditioning program lasting most of three hours per day, six days per week, and including advanced strength training with weights, extensive aerobic conditioning, and more flexibility training (stretching) than most people who are not athletes know is good to do. In this way, my world has become very small indeed.7

Almost all areas of my life are similarly constrained in comparison with my former capacities. I think I’m down to 3-5% of my former capacity overall. A bit more than that with selected aspects of my cognition. Maybe 8%? (It took me about an hour of intense effort last night to compose a memo that in the past I could have dashed off in five minutes.) Retaining as much of these mental capacities as possible is primary to my current quality of life.8

I am experiencing my usual five day recovery period from having gone into town on Thursday for a physical therapy appointment, dinner with friends, and then a bit of people and critter watching for awhile on the courthouse square. Oh, yes, plus the hour and a half round trip of driving my standard transmission vehicle, having to use that dratted clutch pedal with my bad hip. And then there was the standing up for my shower afterwards.9

Waking up Friday was an interesting experience. The level of pain, stiffness, and incoordination (as well as my usual chemical sensitivity symptoms) made it clear to me that it is time to give up trying to do most or all of my own grocery shopping, cooking (which was already minimal), and all other non-essential tasks requiring physical capabilities. I had a long talk with a friend who helped me see that, although I feel a strong desire to be pro-active about addressing my health, I can only work within the scope of my possible choices. My scope of action seems now constrained to palliative care, to managing my quality of life and its apparently inevitable decline.10

In three short weeks (August 2 to August 21), I went from intermittent and effective use of Oxycontin, 20 mg. extended release tablets, to using the full dose as prescribed (twice per day) and still experiencing significant pain even during its maximal effectiveness. Although Oxycontin is known to be addicting, this timeframe is short enough that I think it’s less likely to be habituation and more likely that I once again pushed myself beyond sustainable levels of exertion. “Overdoing it” this past year and a half or so has consistently resulted in increases in my baseline (as well as my more acute) levels of pain.11

Physical therapy, dinner, and a bit of hanging out. My previous town trip was nine days before that and involved lunch, a separate stop for desert (ice cream! :-), and getting gas at a location that pumps for me. It seems my life has become constrained indeed, and that relatively little physical exertion is much too much for me. I am regularly taking the fully prescribed dose of a strong, addictive, long-acting narcotic—the last and strongest type (although not the highest possible dose) of analgesics available for my condition—and it is only reducing my pain to about a 3 or 4 on a scale of 0-10.12

So the decision I made on Friday (and implemented yesterday) was to take again a medication that previously resulted in daily migraine headaches and a net weight gain of about 40-45 pounds. It also knocked my chronic insomnia in the behind and reduced my pain levels from the need to take hydrocodone (e.g., Vicodin) several times daily down to using just two or more ibuprofen. The pain stayed down for several weeks then gradually began increasing. Ironically, it seems the effort I spent on cleaning and organizing my dwelling to increase mobility access (and recently to prepare for wheelchair use) has very likely resulted in the need for that wheelchair sooner than might otherwise have occurred.13

My hope is that, with a limited use of Lyrica (around three weeks or so), I will once again experience a “knockdown” in pain levels and get a few more months of breathing room (and perhaps be able to do some physical conditioning) before I become addicted to prescription narcotics. The migraine headaches I can handle (I only had them daily while taking Lyrica, it took some days before they began, and they stopped soon after I stopped taking it) for that relatively short period of time. It’s the substantial risk of additional significant weight gain (a common known side effect, as are the headaches) that prevented me from making this choice before now. At around 330 pounds last time I was weighted at the doctor’s office, I can ill afford more.14

Such are the risks I now chose to assume, in hopes I will garner a useful, temporary gain while avoiding the worst of the known, possible and long lasting pitfalls.15

2009 August 23