Well, here I am once again, flat on my back and horribly sick and trying to think in terms of mentally starting over. It seems that CFS is just that - a never-ending series of setbacks and starting over. The only constant is constant change; as soon as you get used to being in a certain state, it shifts again.
I have been mostly bedridden for the past week, going through a severe herx reaction from being back on antibiotics for Lyme. The only reason I'm able to sit up with my laptop briefly this morning is that I forgot to take my evening dose last night, so I feel slightly better - temporarily. I just took my morning dose, so I should be feeling crappy again by afternoon. Something to look forward to! I know the herx reaction means the antibiotic is working, but it's hard to think positively when I feel so bad.
I spent my weekend taking naps and trying to watch some of my sons' soccer games. That's all I did, but by 5 pm on Sunday, I felt terrible - severe sore throat, achy all over, exhausted, with pain in my knees. I've been resting as much as possible, trying to keep up with my family (with my husband's help), and escaping into fiction. Thank goodness for books, movies, and favorite tv shows!
To make matters worse, we're struggling with Craig's teacher right now. He's being difficult about helping Craig make up work he missed when he was sick last week, and he tends to talk to his students in a sarcastic, mocking way that Craig finds very upsetting. When Craig asked him what assignments he still needs to make up, he said, "Oh, come on, Craig." That was it - Craig still doesn't know what he's supposed to do. I really do not need this kind of stress right now - I know it's only making me sicker. If it weren't for Ambien, I wouldn't have slept at all last night.
So, I'm trying hard to get back into a positive frame of mind. Starting over. Working my way back to hopefully feeling "not so bad" again someday. Trying to take things one...day...at...a...time.
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.
I feel ya regarding the teachers who don't want to help students make up work. This is one of the main reasons I pulled my son from school and am taking the socially dicey step of homeschooling. So far he is learning more, academically, and sick less. I just refused to have to chase the teachers down for another year just to get his work. Then the teachers get mad at me for doing it. We even had a social worker call and try to get his work- no dice! I had to get it myself. It;s too bad, because in many ways it was a decent and safe school. We need to pay teachers more and fire teachers more.
ReplyDeleteIm sorry you are down. You will be up again, try to remember that. I know it is hard.
I hope by now you are feeling a bit better. And I hope you were able to watch a few good movies and read some good books. Yes, what would we do without them and also, for supportive husbands. I know that our family gets tired of the fight, but the next day we keep on fighting and the ebb and flow of good days mixed in helps get us through. Praying and hoping for a good week for you.
ReplyDeleteYou capture perfectly the dilemma we have as moms with CFS! I've been wondering lately how am I ever going to heal when everyone needs me so much. There has to be a way to fit it all in.
ReplyDeleteI would like to link to your blog on my website, Chronic Fatigue Community (www.chronic-fatigue-community.com), but I wanted to get your permission first. I think you have a particularly unique perspective, since you have kids with CFS as well.
Check it out, and let me know if that would be OK! Thanks!
Hi, Shelli -
ReplyDeleteThanks for the nice comments - I needed that today!
I would love for you to link to my blog - thanks for asking.
I'll take a closer look at your site when I'm feeling better.
Sue
Ughhhh, been there, done that with the teachers!
ReplyDeleteDon't even get me started.
Teachers like that are ignorant and deserve to be fired.
Mind if I fly out to Delaware and yell at him? I would love to.
What makes me most angry though is that this teacher isn't thinking about awful he's probably making your son feel about himself and about being sick.
Gahhh. Seriously. Don't even get me started.
Dear smlacyart -
ReplyDeleteThanks for your support!! I agree with you. We've been through problems with teachers many times before with both of our sons, and it's so frustrating! How can they pick on a sick kid? It goes beyond that with this one, though. It's not just CFS issues with him - he is really coming down hard on our son in several ways and doesn't seem able to see any of his good characteristics. It's very upsetting, and we may end up even requesting a new teacher. So, yes! Please fly to Delaware and yell at him for us!! Thanks -
Sue