I realized this morning that I've been living on the edge of a crash for weeks now, and it takes very little to push me over that edge. I've been going back and forth between OK-but-not-great and totally crashed with very few good days. Life has just been too hectic.
After my total wipe out on Monday, when I had to spend the whole day in bed, I had a much better day yesterday. I went out with my Dad and his wife to do a little shopping (Craig's birthday is today) and cooked dinner, and it seems that was enough to push me over the edge again. I'm not as bad as I was on Monday, but I am once again very achy, with my heart racing from OI. Our visitors left this morning, so I piled the coffee table with all that I need for the day and am camped out here on the couch with plans to do nothing but rest all day.
We're planning to go out for dinner tonight for Craig's birthday. I have a 2 1/2 day break, then my mom and her husband come in for the weekend! Ken will handle the first part of Craig's party on Sunday (he's taking our boys and Craig's friends to a local ski place for snow tubing), then we'll have 8 boys spending the night, and I'll be on my own Monday morning when Ken goes to work (no school Monday). THEN...there is nothing else major on the calendar until February.
I'm getting frustrated by my extremely low stamina right now, but I think it's just a matter of not allowing my body to fully recover from each crash. I guess I need more than a single day of rest to get back to "normal" for me. I had envisioned a nice fresh start to a new year, with a chance to clear off my desk, set some new goals, and dive back into some writing projects, but instead I've just been in survival mode, barely managing to tread water (I went under on Monday!), with everything piling up, both literally and figuratively.
Hopefully, things will improve and get back to normal next week, whatever normal means! In the meantime, I will try my best to rest as much as I can.
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.
7 comments:
Sue, so sorry to hear that things are on the edge! I know how you feel and you may have hit the nail on the head by realizing that you need to fully recover after each crash - and frequently that takes a few days, definitely more than one! It's hard with all the daily activities that have to be done with a family. I hope you find some balance.
Hi Sue,
Your fresh start is coming -- maybe not until February though. That will be your "new year." It's unusual for people to have so many visitors in January. That's when people who DON'T have CFS recover from the holidays! I can imagine how overextended you must be. This is just a pep talk -- that fresh start is coming -- just delayed a few weeks!
Thanks, guys! It really does help to know there are people out there who understand. And I appreciated the pep talk, Toni!
I had a very unsatisfactory nap today - just tossed and turned and couldn't fall asleep. I rely on that nap to get me through the rest of the day! Time for the kids to come home soon...
Sue
Wow. It's exactly the same way with my naps, Sue. I depend on them to get me through the next few hours until the next nap (I have to take multiple naps a day). The problem is, I can't force myself to fall asleep and the worse my symptoms are, the harder it is to fall asleep. Just another Catch-22 of this darned disease.
I know you'll able to enjoy Craig's birthday celebration, even if it means extra rest in the days to come.
Sue
I know you are on Plaquonil like Joel is. Do you think that the die off (it is a cyst buster) is also adding to your lack of energy besides the pushing hard? Joel says he is really tired on it....just a thought. I know that I am in a group online and when I plan my pacing within my energy envelope I try to also look at the energy it takes to kill off Lyme and its buddies. I am taking progesterone right now to sluff off the uterus and it has me completely exhausted.
You know your body the best of anyone, but thought I would throw this out there....Just a thought...
Hope things settle down for you soon!
Fully recovering from each crash makes so much sense.....and is so hard when you have a family. I remember those days!
That's an interesting thought about the plaquonil, Renee. I noticed increased knee pain the first few days and assumed that was the extent of my herx, but maybe it's still affecting me. Thanks!
You are doing too much. You've got to rest, but you've also got to take the peaks out of your activity e.g did you need to go shopping AND cook dinner?
It's easy for me to say as I don't have kids and lots of family around. The thing is to stop before you overdo it, rather than after.
Oh listen to me! I wish I would take my own advice sometimes. Roll on February eh?
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