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.
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Tuesday, March 31, 2009
Coming Back to Life
As you can see from this photo, many of the trees here are still mostly bare, but this one tree in our neighborhood is in full bloom, a sign that things are coming back to life after the winter. I thought that was a fitting analogy today for my own life. I'm finally beginning to feel better after two weeks of being completely incapacitated with a herx/crash, and I feel like I'm coming back to life, too.
During severe crash periods like we just went through, Ken and I feel like we go into survival mode. With me flat on my back on the couch and unable to do anything, Ken comes home from work each day to work another shift - grocery shopping, cooking, doing dishes, helping with homework. When the kids are also sick at the same time - as it was for much of the past two weeks - that sense of just struggling to get through each day is enhanced. Nothing gets done except the bare minimum we need to keep surviving. During times like that, we sometimes talk about how no one outside - no "normal" people - could even imagine the way we're living. It's very isolating sometimes.
But, I'm coming back to life now and facing all the stuff that sat undone for weeks. I even took a walk around the neighborhood today (though that might have been too much!).
Jamie returned from his band trip last night. He said he had a great time and felt good the whole time! Of course, he was totally exhausted after school today...but he DID go to school which was pretty amazing. Craig was home today, after staying up until 1 am at a sleep-over Sunday night (no school on Monday), but this was just a brief post-exertional crash for him - he's already feeling better.
So, life is returning to normal - or at least, as close to normal as things get around here! Hope you had time to enjoy spring today, too.
Yay for "normal!" I'm glad you're feeling better, and I'm glad Jamie had such a good time and weathered it well. Kids are so resilient sometimes!
ReplyDeleteGood to hear you are on the mend. Jo x
ReplyDeleteI like your description of the survival mode you and your husband go into. My husband comes home to a second shift too. It is very isolating ..and I long for the days I can travel, or go out somewhere for a cup of tea~
ReplyDeleteI cannot imagine having two sons with CFS too. You all are such good examples of surving and thriving in the midst of such difficult challenges.
We've been in what you describe "severe crash mode" pretty much this whole four years +. We're just realizing that it's the molds in our systems that are keeping us this way. We're going down to AZ in a month and a half for a six month stay to see if the consistently dry weather helps.
ReplyDeleteSue thank you so much for articulating what this is all like. I gave you a mention on my blog yesterday, that I want you to go look at. Love and hugs.
Hi Sue,
ReplyDeleteYes, it's our two children and me, ill. Husband is trying to keep it all together and is very weary.
I'm so glad things are getting better! I completely understand the loneliness and the survival -- there are many times when husband does everything. Aren't we so lucky to have husband who will do that???
ReplyDeleteYou've been going through a lot these past couple weeks. I'm so glad you had a good day.
ReplyDeleteI'm glad Jamie had a great time during his band trip and everything worked out for him.
Terri