I'm still pretty sick - definitely a combination of allergies plus yet another herx reaction to Lyme treatment. It's been a very rough week, but it's finally Friday.
My sweet little baby boy (OK, he's 14 now and towers over me, but still) is away in Myrtle Beach on a trip with his high school band for four days. It was so hard to say good-bye to him last night!
With CFS, there's just so much to worry about. There's no way he'll get enough sleep on this trip. He usually goes to bed at 8 pm every night! He had to sleep on the bus last night, and lights-out time is 11 pm for the rest of the trip.
Then there's the medication - whew! What an ordeal trying to get that all straightened out. The school insisted that every medication must be in its original bottle and must be given by the band director. When Jamie went on a similar band trip last year in middle school, they let us keep his medications in those weekly reminder boxes. I tried to explain to the school nurse that Jamie takes 20 different pills at 4 different times of day, but she insisted there were no exceptions. So, despite being so sick, I spent an hour Wednesday night organizing Jamie's meds, putting them into 4 different bags according to when they're taken, and making a detailed list of everything. I just hope they can keep it straight. Then there's Epi-pens for his bee sting allergy and a huge cooler of Gatorade to keep him floating in salt and fluids!
I know I need to quit worrying. He managed just fine on last year's trip. The timing is just bad this year, since he just got over that two-week bout of virus, then bronchitis - his stamina isn't quite back to normal yet. He still has lots of make-up work, too, but his teachers have been pretty understanding.
Watching him pack up and saying good-bye last night made me think ahead to college - only 3 1/2 more years! Wow. One thing at a time. As he leaned down to kiss me last night, I said, "Stay safe and healthy, but have fun, too!" He joked, "How can I do both?" He's a great kid, and I'm really glad that he's able to go on this trip and have this kind of experience, in spite of CFIDS. I am truly grateful for that.
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.
6 comments:
I'm sure he will have a great time! Like you said, it's great that he's able to go on the trip in spite of CFIDS. We've signed Jessica up for a church youth group trip in June - the same trip that we had to tell her that she couldn't go on last year because she was too sick. You'll have to give me pointers and encouragement at that time!
I'm sorry about your rough week, and hope you get to feeling better soon!
Laura
You're such a great mom, Sue. I've said before that I don't know how I would have managed this illness had my kids not been grown and out of the house. Just look what you do. Amazing! He'll have a great time and be fine. He's with people who care about him and they'll watch over him.
Toni
Wow, sorry to hear you've had a tough week Sue. It really is amazing what you cope with! If he managed ok last time I'm sure he'll be ok this time too though I'm not surprised you worry.
Take care,
Jane
Wow- I emailed you a while back with our Delaware and CFS connection! I can just tell from reading your blog that you are an excellent mother. Just reading it made me smile. You are also such a kind, caring, and positive person...and I don't even know you!!
I have given out lots of blog sites to family members in trying to educate them about CFS. Next to your blog address I wrote: visiting Sue's site is a treat; she is an example of how to handle this disease with maturity and wisdom that I hope to one day have.
Thanks again for taking the time to blog!
Ginger
I cannot believe all the work to get your son ready...and I really don't know when or if the worrying ever stops! Hope it all goes well and he has a great time with little consequences.
Just checking in. Hope your son had a wonderful trip. I am curious now as to where he attends HS since I am a HS teacher and was in HS band and I also have a BA in music. Band trips are so much fun, and they usually all look out for each other. With any luck, he will have three of his friends reminding him when to take his medicine. :)
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