Occasionally, Nichelle will have a day when she feels well. These are relatively rare. I did some backtracking on the BLOG, to try to evaluate my impressions of the pattern for the past month or so. Here’s what I found:
- Saturday, April 29
- Wednesday, May 31
Partially good days (there may be a few others of these, but not many):
- Friday, April 28
- Thursday, May 11
- Friday, May 12
- Wednesday, May 24
- All the others, especially from May 13 until the present.
On the “great days,” Nichelle can walk, run, drive, cook, and live pain free. Such days tend to appear suddenly, and the good period lasts for no more than 36 hours, and generally just 8 to 12 hours. I think people get the impression (especially because they don’t see her except when she’s in this better state) that Nichelle’s overall health is improving. Sadly, the opposite is clearly the case.
Of late, Nichelle is spending most of her time in bed. (Previously, the couch was her base of operations.) She’s extremely uncomfortable and in significant pain just about all the time, with bouts of severe pain several times a day. The fluid shifts (swelling) in her face and elsewhere can be very pronounced. The Vicodin (just like what Dr. House takes) prescribed by the emergency department doctor—the only pain medication that has actually helped relieve the pain—is gone. Nichelle made 10 pills last 6 weeks, but doctors don’t like to prescribe Vicodin because it is highly addictive. Generally, Nichelle doesn’t like to take strong painkillers like that because they guarantee inactivity, whereas living through the pain offers a slight hope that it will diminish enough at some point for her to perform small tasks.
For the past 24 hours, Nichelle has been in and out of deep and sudden sleep periods. We see this pattern quite regularly. Also, for the past few weeks, she’s been getting a sudden and urgent feeling that she needs to get something to eat. If she doesn’t, she becomes suddenly “drained,” and experiences what she describes as being “beyond weak feeling.”
Although there have been a few more “great” days than we typically saw in the past few months, the overall picture is of slowly worsening symptoms.
So far we have no word on the test results from our Mass. General visit on May 12, which means they were either all normal or are being carefully evaluated. Our next appointment with Dr. Hall at Mass. General is on June 16.
Our church family has been helpful, and they are shifting into a higher gear this week, coordinating more cleaning help and more meal preparation.
The biggest task-related problem I’m having is keeping the house clean. I have a big work-from-home typesetting project I’m working on evenings/weekends, and that’s leaving even less time for mopping and decluttering. (Plus, Nichelle’s worse-than-previously health has given her fewer opportunities for short cleaning spells, or even supervising the kids in the same.)