As most of you know, I have generally been better in recent years, thanks mainly to beta blockers and Imunovir . I have more good days and fewer bad days. I can take walks and do some light weight lifting without going past my Anaerobic Threshold . I can even go to the grocery store without crashing the next day (on a good day with all conditions just right!). I have been baking again and cooking more for my family. And I spend far less time lying down than I used to.
But last week, I was reminded that despite all these wonderful gains, I am still held captive by the restrictions inherent in ME/CFS. It was an unpleasant reminder.
We had a very active, exhausting weekend. My dad and his wife were visiting. They are easy guests, but it is still different than being home alone. They were here for my uncle's funeral. He grew up near here (a fact I never knew before!), so the funeral was just a half hour from our house. Saturday was a very long and tiring day: visiting hours at the funeral home from 10 am - 11:30, church service at noon, graveside service at 1:30 pm, and lunch at 2:30 pm. I knew this would be like running a marathon for me, but we were prepared to leave early if we had to and drove separately from my dad.
Miraculously, I made it through the entire day! Just the late lunch alone was a big deal for me, but I packed plenty of snacks and guzzled a 12 oz. V-8 juice (for the sodium) before the church service. I wanted to be there for my family, especially my aunt and cousins, and I felt pretty good, so I hung in there. We finally got home at 4:30 pm, and I went right to bed for a very late nap. I slept soundly until 6 pm and probably could have just slept through the night, but we did have houseguests. It was a very low-key evening - we ordered pizza and watched a DVD - but the damage had been done.
I didn't feel too bad on Sunday - just very tired - so I went ahead with my plans to make a big corned beef dinner for St. Patty's Day. My dad and his wife left early Monday morning, my husband went to work, and the kids to school...and then I collapsed!
Lately, when I do too much and crash, it only lasts a day, so that's what I was expecting - maybe two days since this had been quite a ways over my limits. Each morning, I woke up expecting to feel better...and instead, I felt worse and worse. This was a severe crash - bad aches, sore throat, no energy, total exhaustion. I tried to listen to my body and stay on the couch - thankfully, it was a normal week, with the kids in school and my husband around in the evenings to help out. Finally, by Friday I felt a little better. Not great yet, but well enough to manage the grocery store (and frustrated by my lack of productivity all week), I thought. By Friday night, I felt awful again and woke up on Saturday morning in my worst state yet. My husband was very supportive and made me stay on the couch. Finally, on Sunday - a week later - I began to improve.
This week has been another rough one. I am feeling better, but my husband has been out of town all week, and my older son is home on spring break. Given his own health problems, that means a week filled with doctor's appointments, lab tests, etc. plus I am doing all the stuff my husband usually helps with - getting up at 6 am to drive Craig to school, doing dishes, driving to and from all kid stuff. I've been pushing my limits all week...and have been cranky and exhausted as a result.
So, once again, CFS has put me in my place and reminded me who's boss. I have no regrets - I am glad I was able to manage the funeral for my family's sake (and my own, too). I know that a couple of years ago, I never would have made it to 4 pm and would have felt far worse all day. But it is discouraging to be reminded so starkly that my life is still governed by these arbitrary limits. I can not skip (or apparently, postpone) my afternoon nap. I can not manage an all-day event or social occasion without paying a steep price for days or weeks afterward.
Don't get me wrong - I am grateful for the improvements I have made and for all of the things I can do now. But in the big picture of life, these are small gains - meaningful, yes, but my life is still defined more by what I can't do than what I can do. I would have loved to walk with my friend in her MS walk last week, but 3 miles is way beyond my capabilities. I am dying to take my kids to NYC to see all the sights, but I can only manage a couple of hours at a time before needing to rest. We haven't been to Disney since our big teen boys were ages 5 and 2. I am thrilled to be able to take walks again, but I am limited to 20-30 minutes at a very slow pace, every other day.
I really try to focus on the positive and on what I can do, not what I can't, but these last two weeks have been difficult. On the plus side, we are taking a little mini vacation this weekend, so that is something to look forward to! I am trying to take care of myself today and rest more.