I expected to be feeling better by now, but I'm still very, very sick. I've been living horizontally for weeks now, lying on the couch and in bed, rarely able to accomplish much upright. I'm in the recliner with my laptop now, but even that is too much for me. My throat's hurting more and more, and I know I need to go lie down again in a moment. This is getting old.
Apparently, this is not only a herx reaction to my Lyme treatment, but also a classic CFIDS crash - a double whammy. I skipped two doses of my antibiotic, in an effort to relieve the symptoms of the herx reaction, but I was still left with a throat so sore it feels like I swallowed barbed wire and flu-like aches all over. I'm guessing I was exposed to a virus - one of the many that my sons and their friends have probably brought into the house!
I have an appointment next week with a Lyme specialist in New Jersey, about two hours away, just to be sure that the treatment I'm getting is adequate. The first doctor I called - someone my family doctor recommended - charged $900 for the first visit!!! Can you believe it? Now, the $300 charged by the one I'm going to see actually seems reasonable. It's insane. They said that lab tests will probably cost another $600. The financial stuff has been another huge stress lately - our cash reserves are pretty much wiped out from medical expenses. I'm sure that stress hasn't helped me feel any better.
There's been one bright spot in this dark period. A friend of mine came by yesterday to offer some company. She brought food for lunch, plus enough for a dinner for my family, and I really enjoyed talking with her. It was just what I needed. I feel blessed to have a friend like this.
I'm trying to remember to be grateful for what I have. I had a few days earlier this week when I felt depressed and overwhelmed, but I'm trying to stay positive now. Through all of this, I am aware that there are plenty of people with CFS who feel this bad all the time. I know I have been fortunate to have some good periods. But it also seems so unfair that when I finally found some treatments that help with CFS, I got Lyme disease.
Today, I am trying to completely give in to being sick and rest completely (as soon as I finish this blog entry!). I know that I've been kind of fighting against my body by trying to still get things done and just making myself sicker. So, I'm giving up for the rest of the day. I'm going to watch a movie (something that I'd normally consider a waste of time during the day) and rest, rest, rest.
P.S. How bizarre is it to have to work hard at resting?? Life with CFS is just surreal sometimes.
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 can totally relate to having to work hard at resting. I'm a mom with two CFS kids, too, and so resting doesn't happen until I know they're taken care of and I find a way to be taken care of. Praying for you.
ReplyDeleteSue,
ReplyDeleteI'm sorry. I know it's frustrating after such a good spell! Being grateful for the good things, as you said, is so important. Take care of yourself!
Laura
You are in my thoughts Sue as you battle or "give in to" the CFS relapse/crash you are experiencing.
ReplyDeleteIt is so hard to give in to it, I always want to fight it myself, and so often that is not the best choice for me.
That's great you are going to see an LLMD for the lyme...hopefully you will be able to gather more info and support for fighting this nasty disease.
Take care
Renee
Resting is the hardest thing to do when you have CFS! I still can't get over the feeling that I should be doing something. I hope you are taking care of yourself and feeling better bit by bit.
ReplyDeleteThank you also for your comment on my blog! I can't tell you what it means to have someone not only hear but understand what I'm going through. It's the reason I've been reaching out in the first place.
So, put that down as one of your accomplishments, even when you're flat on your back!