I have yet another cold. I get them it seems every six weeks or so. They never progress beyond your typical cold (knock on wood) but they are annoying. But despite my cold, I had really good days on Sunday and Monday, the days I usually come off of Dex and are most fatigued. On Monday afternoon, William and I went for a long power walk (well, "long" for me, not for him) and I thought that despite my cold, I felt pretty dang good. Maybe I'd skip my fatigue days this week. And then Tuesday arrived. Yuck. I got the kids off to school and went back to bed for an hour, met up with my parents for breakfast, then went home and right back to bed. I woke up in time for the girls to come home and managed to get them to their activities, and by eight o'clock, I was asleep on the couch.
Wednesday was better but still a struggle. I went to Myeloma Jenny's and we worked on the
www.myelomacrowd.org site and then we went to lunch at Koi where we met a third myeloma warrior, Heidi. Jenny met Heidi on Facebook and this was our first meeting with her. She lives about 20 minutes away from us and was diagnosed in December at age 51. She is being prepped for a stem cell transplant.
As I was driving to the restaurant, it dawned on me what fatigue is and the difference between fatigue and just being tired. With fatigue, it never matters how much sleep one gets, it doesn't help. I could sleep all day when I'm fatigued and it just won't matter, I'll still feel fatigued. It would be nice if I could just sleep it off but it doesn't work that wait. I just have to wait until my body isn't fatigued anymore. It kind of sucks.
Anyway, throughout lunch, I had to concentrate on everything that was being said. I got that odd sensation of somewhat floating. For me, it's now more "mind over matter." While I have that sensation, I know I'm not going to pass out so I just don't panic and get through it. When I first started getting that floating feeling, I wasn't so sure! But now that I'm a veteran, I know my body now! I went home and had to be horizontal for a bit. A few hours later, William and I went to a Death by Chocolate event (yum!) and to a movie. We saw Jack Ryan Phantom Recruit. Much of it was filmed in Moscow, which was a huge treat for me. I love that city! Anyway, my strange floating feeling went away almost entirely. Sometimes getting up and moving makes my fatigue and side effects almost disappear and such was the case last night.
Today it's a bit early to tell but I think my fatigue is mostly gone. After writing my Divorced Moms column, I'll go for a power walk and see how that goes. Usually my fatigue days don't last more than a day or two so let's hope it's gone until next week.
When I started treatment, my nurses told me that after transplant, I'd find out what my new normal is. For some, it's 80 percent, others, it's something else. I think for me, 80 percent sounds accurate. It's doable. I'm not working (thank goodness) and that helps. Really, I don't "have" to do anything. So if I'm having a bad day, while I might have a million things on my list, in reality, almost none of them are "musts." So I'm nice to myself. If I feel crappy, nothing gets done that isn't absolutely required. I look at some runners who look so energetic and strong and powerful. I used to run. I miss being able to do that. But that's ok. I am strong. I challenge someone in my shoes to do a lot better. Still, I miss that feeling of feeling healthy and strong. Sigh.
I'm still on maintenance medications. Maybe when I'm off of these meds, I'll feel more like the old me. That would be nice. If this is as good as it gets, well I'll be grateful for that. I'll be grateful for life.
