My 10-year old, Craig, has a nasty case of bronchitis; the doctor said it was on the verge of turning into pneumonia. He's been home sick from school for the past two days, feeling awful.
Yesterday, I caught myself starting to feel depressed. I saw my poor little guy lying on the couch like a limp rag, and I felt helpless. Plus, I felt sorry for myself since I was sick all last week, my older son was sick, and now I have another sick kid to take care of, so I haven't gotten any work done in awhile.
Then, I remembered all the other Moms of kids with CFIDS that I've heard from lately - many of those kids newly diagnosed (or not yet diagnosed) and so ill they can't go to school. All those kids, all over the world, who are too sick to get off the couch and all those parents who don't know what to do about this crazy illness. I also remembered when we were in that same place - day after day of watching our kids suffer and being unable to help.
I realized how very fortunate we are. We've found treatments that help our kids to live an almost-normal life. These crashes we've gone through lately have become unusual events.
This is part of the reason why I write this blog and why I try to answer all the e-mails I get from parents and from adults with CFS. We're all in this together, battling this mysterious disease that has the potential to take so much from our lives. Yes, it's a struggle every day to keep going in the face of such challenges, but I can't feel sorry for myself. I need to keep going for myself, for my kids, and for all the other millions of people out there who share these challenges with us.
Today, I used the CFIDS Association's Action Center to send letters to the media and government officials to support additional funding for CFIDS research. It only took 10 minutes, but hopefully, I'm helping to get the message across that this illness deserves more attention. The more letters that go out, the better chance we'll be heard, so go to the website now and send your own letters. One of the letters concerns a Congressional meeting on CFIDS this Thursday, so don't put it off. We have to keep fighting this illness however we 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.
2 comments:
Being one of those moms you mentioned with a kid not yet diagnosed, I thank you for being there and for your help and encouragement! Know that you're helping us get through it too.
-Laura
Thanks for the kind words, Laura! That means a lot to me, to know that I'm helping others get through this, too.
Sue
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