Whew, it's been a very busy weekend, and it's still only Saturday!
Ken is out for the evening, driving seven teenage boys to a ski mountain for snow tubing, to celebrate Craig's birthday. Of course, I never could have managed this trip! It's about a 90-minute drive each way, plus many hours at the ski place. I felt bad about Ken having to do this on his own, but that's just the way it is. I also felt relieved I didn't have to go because it would have knocked me out....it'll probably knock Ken out, and he doesn't have CFS!
My shift begins tomorrow morning when all those teen boys wake up starving (as they always are at this age!). I've made up 5 batches of pancake batter - hope it will be enough!
Big news yesterday...I went grocery shopping, for the first time since starting the beta blockers a week ago. Last week, with Ken doing most of the work, my average heart rate during the shopping trip was 109 (105 is supposed to my anaerobic threshold, the limit after which Post-Exertional Malaise will be triggered). Just walking slowly around the store, my heart rate was constantly above my upper limit, and, as you would expect, I was badly crashed the next day.
In contrast, I went yesterday by myself. Even with pushing the cart and doing all the lifting myself, my average heart rate was 82, and it never went above 105 while I was in the store! Interestingly, it spiked the highest after I got home and was carrying the groceries into the house. At that point, it spiked up to 120's a couple of times, but since I was monitoring it, I was able to stop, sit down, and rest to bring it back down. And...no crash today! I felt fine.
In fact, this morning, I went to the first meeting of the newly re-formed Delaware ME/CFS and FM Support Group (it used to meet years ago, before I got sick). As it turned out, only three of us came, but we all heard from others who are interested. It's very difficult to plan a meeting for people with CFS...some of us can't manage afternoons and others can't handle mornings. At least we all understand these limitations! We're going to try a slightly later time next month, to try to catch both the morning and afternoon people.
I really enjoyed meeting these two women (one of whom I've chatted with extensively online). I know lots of kids and teens around here with ME/CFS, but these were the first two adults I've met (well, one had FM, not CFS, but still...). I'm really excited about this group and hope it grows.
So, I think it's time for me to pop in a DVD and relax. I need to rest up so I'm in good shape for the onslaught of teen boys tomorrow morning!
Hope you're having a good weekend!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Omigosh! 7 teens whew! Hope the pancakes hold out!! :-) Enjoy!
ReplyDeleteI hope all went well with the birthday snow adventure - for you, your husband and the boys. Curious about the note you had relative to keeping your pulse rate under the 105 rate. I haven't read some of the other posts, but it seems that your comments are that if you keep under that target you suffer less rebound. My son's resting plus can jump to 101 and up with obviously no effort...if he stands up or tries to do anything it goes much further. What are you using to monitor your pulse? Would be interested to monitor my son's data to see if we can lower the rebound days. He will at times have a couple of good days - relative good days I should say. Not like before or what the rest of the family regards as good days. But then get hit hard... 1 step forward 20 back. Any info here is much appreciated!!! Twoboysmom
ReplyDeleteThat is great news about your shopping trip. I'm still on a rollercoaster. I'm fine one day and crashed the next often for no good reason that I can figure out. Good luck with the boys in the morning. I was just watching SpongeBob which always cheers me up.
ReplyDeleteI hope your breakfast went well today, Sue. It's wonderful that the beta blockers seem to be working so well.
ReplyDeleteI think sometimes cfs/ME groups can be a joke. Let me explain. We started on here (a small northern city) and it pretty much collapsed because it was small, and given the nature of the illness most of us were unable to attend on most meetings. Sigh, well thank goodness we can still have the support of our internet friends right? I hope this group works out better!!
ReplyDeleteOh, now I want to go snow tubing - how fun!!
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