This is not my normal kind of post. I don’t have my usual cup of tea by my side. I don’t have any charming anecdotes to share. This post is about the harsh reality that comes from living with chronic illness. My purpose here is not to bitch and complain. As I have mentioned elsewhere, I have another (anonymous) blog for that. My reasons for posting this tonight is because while I am working everyday to shape my reality into something I can live with and enjoy, there is another aspect of my life that is out of my control. It can take my best efforts and absolutely destroy them for days or even weeks on end. This post is about what the last few weeks have been for me.
I was in Sarasota a few weeks ago with my wonderful wife and step daughter. They still had things they needed to do on that coast, so for financial as well as health reasons, drove back to my little beach town on my own. This is now a known quantity for me, so even though it is a tough trip, I can do it without totally screwing up my chronic fatigue syndrome. When I got home, I rested for a few days and everything was under control. Tipping point avoided.
Let me take a minute out here and explain about the tipping point. In medical terms, it is called Post-Exertional Malaise (PEM). This is what happens when a person with Chronic Fatigue pushes past his energy limits for a given day and the metaphorical fuel gauge dips into the red. The results are devastating. It is hard to put into words exactly what this feels like because after years of chronic illness and multiple major surgeries, I’ve never experienced anything else that really compares with it. What makes PEM all the more difficult is that there is no indicator that this line in the sand is approaching or even that it has been crossed. PEM only makes itself known hours later when there is nothing to be done to lessen its impact.
Back to my story. As I said, I had been home for a few days, and I had recovered enough from my trip to Sarasota to run a few errands. These included going to local health food coop for some supplements, the pharmacy for some medications and one other thing. There were two things I didn’t need to do, but I wanted to do. I stopped by the bookstore to buy a couple of books and have a cup of tea. Then I treated myself to dinner at the local Asian buffet. I made it home and so far so good. Tipping point had not been reached. It was a lot for one day, but at the end of it, I was ok.
The next day I was meeting my wife and step daughter in a town about 60 miles away for a doctor appointment. Normally, I know better than to plan two days of activities in a row. A day or two in between has really become my rule of thumb, and I almost always stick to it. This time I thought I could skate through since I had several days of recoup time before and I made sure to sleep late before making the drive on the second day.
That second day passed without any fanfare. I made the drive in, met my wife and step daughter, stayed for the appointment. We then went out to eat, and I made the drive home. No red flags. No warnings. I thought everything was fine.
Home in bed, hours later, the awful truth made itself known. Tipping point exceeded. Full blown PEM came crashing down on my body. Every muscle hurt. Every joint ached. All energy was gone. The fifteen feet to the bathroom felt like the last mile of a marathon. Standing long enough to actually use the bathroom surely would have caused me to pass out on the spot, so sitting was mandatory. Then the trip back to bed left me gasping to catch my breath.
This went on for days. Days. The road back from one of these episodes is long and exceedingly slow. It was a week before I was able to rejoin the world in even a limited manner. As always, my first steps coming back into life were tentative like a new colt testing his legs. Then the other shoe dropped.
The one other thing I did on the day I ran errands back at the beginning of this story was to go to the lab for a couple of tests. The test results finally came back, and my doctor put me on an antibiotic. It didn’t even occur to me to be concerned about this. No canary in the coal mine. A day and a half into the regimen, my digestive tract decided to violently object to my taking this particular medication. This was the other shoe.
I will spare you the details of that experience, but it meant more days in bed trying to claw my way back to some semblance of life. The good news is I made it. I am still a little shaky, but I for the most part I am back. Last night I made bucatini with clam sauce. Today I made angel hair pasta with a traditional Italian meat sauce. I am back on my path of trying to construct a life.
Thing this is, though, I’ve lost three weeks. I had a day or two here and there, but most of the last three weeks is just gone. If you wonder why the small victories mean so much to me, it is because there are days and weeks like these in my past and there will inevitably be more in my future. I have to celebrate my victories where I can find them or all I will have are defeats, and that is no way to live. My hope for anyone reading this is that you can celebrate your good days wherever and whenever you can find them.