Monday, March 19, 2007

Rough Times

I had a really rough weekend. Friday afternoon, my doctor left me a message that I needed to stop taking Valcyte immediately. My labwork results had shown very low white blood cell counts. It's probably due to the bronchitis, but Valcyte is known to affect bone marrow. I was upset about stopping the anti-viral, but I could tell my doctor was seriously concerned, so, of course, I listened to her.

Over the weekend, my bronchitis got much, much worse, despite the anitbiotic. Saturday passed by in a fog. I had severe, deep aches all over my body. My chest and sinuses were solidly congested,and I was coughing so hard that my ribs ached by Sunday. I mostly just stayed in bed with the heating pad. It was one of those days when I was too sick to even read or watch tv.

Sunday was a bit better, but I still feel pretty rotten today. I got up, had breakfast, read for a half hour, then went back to bed for a two-hour nap. I shouldn't even be sitting up to type this, but I was feeling desperate for some kind of connection with the outside world.

Worse than the physical problems today, I'm feeling so depressed. I'm so sick of the burdens of CFIDS, of living every minute of every day in this constant battle with my own body. I've had enough of all these limits and restrictions. I want to live freely again.

Rationally, I know that I'll feel better about my life when I start to feel better physically, that the bronchitis will eventually clear up and I'll be able to get back to my usual optimism. Emotionally, though, it just all seems so useless right now. I just want to give up, quit fighting, and somehow escape. That's impossible, of course. That's the most frustrating aspect of living with CFIDS. There is no escape, no vacation from it, just an occasional good day (if you're lucky).

Back to bed.


  1. I'm sorry things are so hard right now! Sometimes, all you can do is get through the day. I understand.

  2. Anonymous9:50 PM

    Hi Sue,
    Hang in there! We don't know each other but I follow your progress closely - esp w/ the valcyte. I'm pulling for you with this valcyte! May your system beat back the bronchitis soon!

  3. I've been visiting your blog for a month or so now. My two teenagers and I have CFS. I couldn't help commenting after your post today. I know how you are feeling and it is not a fun place to be. Don't give up, keep on keeping on. Hope I can be of some support to you sometime.

  4. Anonymous4:00 AM

    I'm sorry to hear you're sick with bronchitis and that your doctor took you off of Valcyte. I hope your antibiotics kick in soon. Hopefully the Valcyte you took will do some good. Do you think you'll be going back on it in the future? I wonder if Montoya's patients had similar problems?

    I can no longer get into Immunesupport. Maybe it's my brainfog or they are mad i asked them to take me off their e-mailing list last year. I got in once and read that others experienced problems with low white blood count but i have no idea what's happened to them.

    You're so right about there being no vacation from CFS. I hope you see better days soon.


  5. Sue,
    I'm sorry to hear how sick you are feeling. I understand the need to escape from CFS. Hang in there.
    Wishing you better days,
    mary anne

  6. Just sending good thoughts really: I know just what you mean because I felt excatly the same last week. I have CFS, had flu last week and it coincided with the anniversary of my Mum's death. Oh how I longed for her care.

    I guess we just want to be children again really: my partner's great too, but there are the kids to look after and the animals and as an adult you just have to brave and get on with it, but it'd be lovely to be tucked in with a nice drink and your comics again !

    Hope you feel better soon --- there is light at the end of the tunnel. This time last week I felt like packing it all in and now I feel more like myself again ---ropey as that is !!

    Big hug !

  7. Anonymous5:41 PM

    Sorry to hear you're feeling bad with the bronchitis. I had the same thing twice since January -- a very miserable cold/chest/aching thing. I'm not on Valcyte yet, but am thinking about it and appreciate your sharing your experience.