My son is the one who had surgery a week ago, but both he and I have been trying to recover this week. It's been a rough month here, especially for him.
Our 15-year old son has missed 3 of the last 4 weeks of school (and 6 weeks total so far this year). First, he had a week-long crash after a snowboarding weekend. He has the mildest CFS in our house and is normally symptom-free and can do anything he wants, as long as he takes his medication. So, he can handle a sleepover or a day of snowboarding...but apparently, two sleepovers in a row with a full day of snowboarding in between is too much! It's also possible there was a viral trigger involved because he was congested that week.
He went back to school the next week, but by the weekend was feeling bad again. That turned out to be bronchitis and a sinus infection - because of his CFS, infections like that just totally knock him out, so he missed another week of school. He felt better by Thursday night, just in time for his knee surgery on Friday! His congestion was gone and his energy was back, so we went ahead with the scheduled surgery (he had two days off from school so the timing was critical).
So, he spent this last week trying to recover from surgery. We'd taken all the right precautions, notifying the surgeon and anesthesiologist of his CFS and orthostatic intolerance (check out this previous post for advice plus a link to an excellent article to print if you are having surgery), but he still had a rough time. I guess surgery is just a tremendous stress on the body, triggering a severe CFS flare-up. The surgery itself was disappointing because the surgeon discovered that his previous repair didn't hold, and our son is going to need a third surgery.
I crashed after his surgery, too! We had to get up at 5 am that day and spent most of the day at the hospital, sitting in various uncomfortable chairs. They didn't discharge him until mid-afternoon, by which time I was starving and exhausted. So, we both spent the next few days on the couch, recovering.
Instead of getting better this week, he seemed to be getting worse and developed a mild fever and some congestion about mid-week. It is always so hard to tell the symptoms of "just" CFS from an actual infection, but by Friday, I decided his pediatrician should take another look at him. She said the same thing - the smoldering fever, swollen glands, and exhaustion could be a lingering CFS crash, but given his history, his susceptibility to bacterial infections (like all people with CFS), and swollen sinuses, she decided it was most likely a sinus infection and switched him to a different antibiotic. He was already perking up a tiny bit last night, so I am hoping we are on the right track now.
That poor kid has been through so much! He started his freshman year of high school so excited and eager; he even made the soccer team. Then, on the last day of try-outs, his knee finally gave out for good. Instead of playing soccer for his school and enjoying various activities, he's had two surgeries, is struggling to catch up on missed work and is missing out on everything else. We are trying to stay positive, but watching your child suffer day after day is just heart-breaking.
Besides that, I have been totally exhausted and overwhelmed, focused entirely on taking care of him and not getting much else done or taking care of myself. I have had a case of thrush for 3 weeks that won't go away. After 3 weeks on Diflucan with some improvement but still lingering symptoms, my doctor ordered some lab tests yesterday to find out exactly what kind of yeast we're dealing with so she can choose a targeted treatment. I'm sure that is adding to my own CFS flare-up, along with countless trips to doctor's appointments, labs, the drugstore, and the grocery store. Teen boys eat a lot, especially when they are stuck at home!! It felt like I spent all week standing at the sink, doing dishes.
So, I'm sorry I haven't posted much here lately. I have hardly written anything at all this past month, so don't take it personally.
We are trying to keep our senses of humor. Last night at dinner, our son was mock-complaining about spending a lame Friday night watching DVDs with his parents, so I started singing "It's a Hard Knock Life" from Annie. He cracked up and said, "Our life would make the crappiest musical ever!" We all got a laugh out of that and took turns coming up with songs about going to the doctor, lying on the couch, etc. ("Lying on the couch" goes perfectly to the tune of "Master of the House" from Les Miz).
Sometimes, you just have to laugh, right?
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.
5 comments:
Your attitude is always a good example for the rest of us! When you get discouraged it does not last long. On the other hand you have had a couple of tougher years in your home with Jamie and now Craig. You meet challenges with grit and I am amazed you can find the sunshine and joy in every day. Bless you Sue and your family.
Oh, wow, Renee - thanks so much for your very kind words of encouragement. I have to admit I am not seeing much sunshine and joy today - Craig and I are both badly crashed. I finally finished our tax return and am crawling back into bed!!
Sorry you guys are having such a bad time lately: Hope that things turn around soon, and everybody is on the upswing.
Wishing you both speedy recoveries from your crashes. Hope you can both rest up and look after each other!
Sounds really exhausting Sue. A lot for you on top of just dealing daily with your own symptoms and limitations. I really hope this period is over for him soon and you can both get back to "normal"
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