Another lost week. I caught Craig's bronchitis, and it completely knocked me out this week. Plus, Craig's infection recurred, and Jamie had a 1-day crash. I was so sick that I spent 3 days in bed. On Wednesday, both boys were home sick, and I pretty much ignored them (they watched way too much tv!).
So, I'm on Zithromax, and Craig is back on it. The boys are both back in school (just in time for the weekend again), and I'm doing a lot better, though still kinda crummy with really low stamina.
I saw my doctor on Tuesday when she diagnosed the bronchitis. Of course, this infection muddies the waters and makes it difficult to tell what, if any, effect the Valcyte is having. I talked to her about dosing, and she said this is as high as she feels comfortable going. I had my labs done today, so we'll see what they show. I will probably refill the Valcyte for one more month to give it some more time, unless my doctor sees something alarming on my blood tests.
Now that I'm out of bed, I feel so overwhelmed. There are stacks of paperwork everywhere (bills, school stuff, mail), about 80 e-mails in my inbox, and so many writing projects waiting. For the past 6 weeks, I feel like I've been in survival mode, every day just focusing on getting over the next hurdle, never able to move forward or get much done. I know it's this way for everyone with CFIDS (and plenty of healthy people, too!), but it's been especially bad for me since January 1.
My next hurdle is another half day of consulting on Monday, so I'll need to take it very easy this weekend (again) to make sure I'll be able to do it. Then, I'll need to recover quickly because we're driving 5 hours to my sister's house next weekend for my niece and nephew's birthdays. It'll be a busy, chaotic, crowded weekend, so I'm worried about that, too!
Just one day at a time, 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.
Sue,
ReplyDeleteI'm sorry to hear all you have been coping with. I hope you will not push too far. Hopefully you will get some quiet time to rest.
Hi Sue, i left you a post on immunopro message board. i saw you found your way there.
ReplyDeletei am sorry to hear you and the boys are having such a rough time. us on our end are not doing much better.
i dont know how you do it with all this kids sick and still writing so much. on top of it you write realy well,hard to believe your brain is affected by CFIDS.(oh, i meant it as a compliment)
karina xx
sue, i have just read your latest blog and have to say i am shocked.
ReplyDeletei know everyone is different but please give yourself a chance!
bronchitus, valcyte, working again,
2 kids, and a 5 hour drive! my m.e. doctor would say rest, rest, rest, or you will never get better. with that work load you could crash completely and end up confined to bed and only leaving the house in a wheelchair (like me). so please be careful and take it easy!