Growing up on a farm, there was never much time for rest. We worked hard, getting more done in 12 hours than most people did in 24. We were proud of that strong work ethic. Laziness had no place in our life, nor did it gain any respect.
Melanoma (Yervoy) treatment has no respect for strong work ethics, or busy schedules. Since I started the clinical trial, my body demands rest or it stops functioning at peak capacity, grinding me down to a dim-witted simpleton with a vise-like headache. Granted, that can hold true for anyone, (maybe not the dim-witted part) but my normal level of endurance and energy is markedly lower than before treatment and diagnosis.
It’s a fact I have to live with, embrace and adjust for in my schedule. It’s hard.
For one, as a journalist, long days (10 to 12 hours) are unavoidable at times. With spring elections recently completed, election-night coverage severely minimized my effectiveness the next day, sending me home much early than normal with a headache that felt like the Hulk squeezing a melon – mine.
Aside from job requirements, in my head I’m still trying to clarify the difference between needing to rest and laziness. A day or two of solid activity with little down time usually results in a couple of extra hours of sleep and several more of rest to begin feeling normal again. I try to ignore it, yet pushing beyond my limits results in the Hulk threatening my brain matter again and me wandering around trying to focus – on anything. Pushing more makes joints and muscles join in the revolt.
As my treatments spread out to every 12 weeks during the maintenance phase of the clinical trial, the side-effects became less severe, but by no means does it take a vacation from the havoc it causes to my body. In my head, I keep thinking I can go back to my normal lifestyle, but my body continually pulls me back to the reality of the treatment and the disease.
Resting is not being lazy. I say that more to remind myself than to make a statement. My youngest son told me it’s about time I learned to rest and sit still once in a while. I know. It still isn’t easy.
Even with the knowledge of the deadliness of this disease, I keep thinking the treatment will buy me time, I won’t have to slow down as much – not yet – because I’m usually feeling fairly healthy and strong. There is no evidence of disease at this point, which is a blessing beyond compare, but will it take another spot to show up before I slam on the brakes completely? I fear it might. That’s why I try to give myself permission to rest, to take naps, to listen intently to my body.
In all reality, a day or two of hard work usually equals one day of rest it seems. The improvement I feel after that rest should be proof enough of its value, yet in the middle of life and all its demands, it’s a challenge to concede to the limits disease and treatment bring.
There is the saying, “You can sleep when you’re dead,” but if sleep and rest are attempts at extending and enriching life, why do we brush it aside so easily? Rest is not being lazy, it’s being smart.