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:
Great days:
- 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
Bad-to-really-bad days:
- 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.)
Ugh. Kind of a low weekend. Weekends always seem to be tough for me, but this one was worse than usual for part of it.
Saturday was mostly productive, but I blew something out of proportion with the kids Saturday night. This is definitely a side effect of stress. After calling them all once to help set out dinner, I threatened all of them with no food if they weren’t at my side by the count of three, fully expecting them to comply.
Isaac and David decided I was serious (the second time), but John didn’t arrive as ordered, so I said he didn’t get to eat. He stormed out, heading to a friend’s house to get some food. I realized (too late) that I was being a complete jerk, but that there had to be more than this than was on the surface, so I took off after him. What I’d never realized was that not being allowed to eat was something that he was punished (abused) with as a child, which brought up some really bad memories and a moderate amount of anger. This is part of the peril of having incomplete information on John’s history. Realizing all this, I felt even worse.
John came home with me, and we ate. I explained to all the kids how difficult it is to watch Mom suffer constantly, and be completely unable to do anything about it, and that I occasionally show an inappropriate degree of anger for small things. I spent the entire speech sobbing. David gave me a hug, and NaNi thought I was laughing, so she laughed along. I spent the next couple of hours weeping, which shows I must have really needed an emotional realease.
The ironic thing is that I’ve become, in general, many times more easygoing than I used to be (and I was very easygoing to start with). With Nichelle so sick, nothing negative that isn’t really, really major matters anymore. I shudder now when I think about the things that I used to find annoying. I think I’d even enjoy shopping for clothes if I could do it with Nichelle.
On Sunday my dark cloud still hadn’t lifted, and I spent a long time talking/crying/ranting with Nichelle. She’s always an encouragement, although at this point she confessed to being at a loss for words. One of the things we talked about was the difference between what I feel and what I think or believe. For example, I believe that God is sovereign, and that He has a purpose for all that is happening to us. But occasionally I get into “down” periods where I feel just the opposite—where extrapolating the past into the future leads to only despair, and when I wonder, just as David did in the Psalms, why God allows evildoers to prosper while the innocent (especially their victims) are tormented.
Nichelle spent pretty much the entire weekend in bed, in severe pain. The swelling was worse than I’ve ever seen. We have not a word of new information on the medical front, except that we’ve eliminated yet another painkiller as completely ineffective. (Leaving Vicodin as the only pain management drug that has helped, but we’ve no prescription for it.) June 16 is our next appointment with Dr. Hall, and, as we’ve heard nothing back about the test results, I am beginning to fear they were all normal.
Onward …
I’m going to go out on a limb and, although we’re only 7 days into it, label June as, “Worst month, ever,” regarding Nichelle’s health, especially the pain level.
We are now getting at least 2 meals a week from ladies at the church. Many, many people signed up. It helps.
More pain. This morning Nichelle described a “crushing pain” in her chest, and mentioned a “spacey” or dizzy feeling whenever she sat up, lay down, or rolled over.
Two days ago she had a “down” feeling day, which is very rare for her.
We still try to use humor. I told her at one point: “Look on the bright side. Right now you think, ‘How could this possibly get any worse?’ but in a month you’ll be able to look back and say, ‘Oh, that’s how!'”
I’m sorry things are so bad. Isn’t it interesting how your life perspective changes… instead of everything having to be ideal, expectations of life are lowered, and the “real” important things become actually important.
I will be praying. I’m glad your church family down there is taking care of you.
I remember how frustrating it was when I was functioning pretty lowly- barely able to show up to work (nevermind do much while I’m there), not be able to do much after work, and spending weekends not doing anything except “resting up”, and then I would use my spare energy to go to Bible study or church- and people didn’t realize I had a washout week- and that was my “high point”. I know how frustrating it is. Sometimes it was hard to feed myself- yet it was really hard to ask for help when it was so sporadic.. and when it wasn’t clear what “it” was. People get surgery, they get childbirth… they often have no idea how little you can do with a chronic illness- nevermind a yet unnamed one.
Be thankful that you have eachother- imagine being single- I know it must add frustration not being able to have an ideal home or marriage… but imagine the alternative! What a blessing to have a husband who can financially and physically care for you! What a blessing to have a wife and children! Your kids will be so “in tune” with pain and suffering, much more than those raised by healthy parents. It may even guide their interests in careers.
I’ll be praying!