For the past few days, the title lyrics from a song by jazz-duo Tuck and Patti have been running through my head: “Sitting here in limbo.” That’s exactly how I’ve been feeling – in limbo.
We had another weekend filled with illness. This time it was 11-year old Jamie. He had a fever of 103 on Saturday and has been coughing since Thursday. With his CFIDS-activated immune system, it’s unusual for him to catch a virus, but when one does make it past his defenses, it really knocks him out. Today is his 6th day with a fever, and the cough and congestion have been keeping him up at night. He came for breakfast this morning crawling on his hands and knees because his legs hurt so much he couldn’t stand up.
The worst part about this weekend’s confinement was that the weather was unseasonably perfect, with sunny days and temperatures in the 70’s. We had planned to take a mini-vacation down to Rehoboth Beach here in Delaware this weekend and were all disappointed to have to cancel our plans.
Craig was feeling fine, so my husband, Ken, was busy keeping him engaged all weekend, while I stayed home with Jamie (other than a trip to the pediatrician’s office). This division of child care makes sense, since my stamina is still pretty low, but I’m getting a little stir crazy.
Yesterday was the worst of it. Craig was home sick from school. It was another Monday crash for him, with a mild fever, aches all over, headache, and lethargy. This seems to happen a lot, probably because he’s more active on weekends. It’s another depressing reminder of the specter of CFS that hangs over our house. Both boys felt too horrible yesterday to do much of anything, so I just tried to make them comfortable. We watched a DVD on ancient Egypt since Jamie is studying it in Social Studies, ate lunch, took naps, and watched far too much television. I did manage to get all of us outdoors in the afternoon, with our three folding lounge chairs lined up under a tree and covered with a selection of books for each of us. The isolation was made even worse because our internet service was out all day, removing my only connection with the outside world.
I’ve been mostly confined to the house for 10 days now, either taking care of sick children or trying to recover from my own crash. Eleven days ago, I wrote in my journal, “I’m so sick of running around. I just want to stay in our house and rest.” Be careful what you wish for.
This kind of waiting-and-resting state is familiar to anyone who lives with CFS. Some days (or weeks) or just like this. If you push when you’re feeling so-so, you’ll soon be feeling worse. If you want to avoid a severe crash, you have no choice but to rest. I’m still in this in-between state, not fully crashed but unable to do much. I don’t know whether I’m still recovering from last’s week’s bad crash or whether my immune system is reacting to the presence of Jamie’s virus, but my throats starts to hurt and my legs ache after minimal activity. I’ve learned that these are my early-warning signs. If I ignore them and keep moving, I’ll soon feel worse. So, for now, I’m sitting here in limbo. At least my internet connection is working today.
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.
No comments:
Post a Comment