Wednesday, October 15, 2008

3 AM

I woke up in the middle of the night last night with a sense of despair, loneliness, and feeling disconnected. As I lay there I found myself saying the words of the Serenity Prayer. I'm scared. It seems with this illness I develop new levels of being in relationship with it, if that makes sense.

The first 6 months at least was spent in denial intermingled with the grief I felt at saying goodbye to a career I loved. One that seemed to be finally taking off.

I thought getting good rest, eating better, taking lots of supplements would fix me. It didn't so I sought out the help of a good doctor. After 6 weeks of supplements that he recommended with no improvement we decided to treat lyme. For awhile I thought lyme and babesia were primarily what I had. Certainly I would respond to antibiotics and babs treatment.

Five months later, I still have little improvement. I had some but it has been swallowed up by this latest virus.

Now I'm back to trying to understand this illness. What is it? I'm finding myself having to come to terms with the fact that this isn't going to go away. It's not going to be fixed with the "right" treatment. While I may (and hope to) get better, hopefully much better, I'll never be the same.

I remember talking to a friend shortly after my mom died. She had lost her mom around the same age as I had but it had been 10 years. She said to me she still missed her mom and while the pain never quite went away, it did become easier to bear. I was overwhelmed by her words. I thought to myself I don't want to feel this much pain over the next 10 years. Now, 13 years later, her words ring true.

I'm trying to remind myself that I won't, or hopefully, won't be at this level of illness for the rest of my life.

A couple weeks ago I was searching for stories of people who had recovered from cfids. I came across Bruce Campbell's work. He said one of the things that helped him was he let go of the word recovery. He found that when full recovery was his goal that his entire mood rested on how he was doing physically. When he let go of that goal he found he was able to rest more easily-almost like a surrender. I find that when I'm searching for the cure I feel a sense of inner pressure that drains my energy. I also find that when I'm trying to act like I feel better than I really feel-this too drains my energy.

I'm trying to find a way to accept this and rest into it.

I feel just lost though. I don't know what to do next in my treatment. Having my doctor bring up valcyte has put in a tizzy. I keep pretending I've made a decision to see how each one feels but I can't get a sense of what to do.

I bought a book by a woman who did actually recover from cfids by focusing on sleep, rest, and diet. It took her 3 years. Unfortunately, that hasn't worked for me though I can't say I've truly been resting. To me, resting implies a sense of peace also. Something I've found very elusive this past year.

In the middle of the night I found myself planning on how I think my days should be structured to include meditation/relaxation, a short walk when I can. I'm starting to read a book called Poetry as Spiritual Practice. I've only read the first few pages but I like what it has to say so far. I plan on also reading part so of another book that helps one reconnect with a core inner part of oneself. I need that right now.

I realized too last night that I'm trying to create connections with certain people where in actuality there are little. It's like trying to get blood out of a few turnips. That itself sucks up energy because I find myself feeling disappointed a lot of the time that my attempts to connect fall short. I imagine it's hard to know how to be with someone who is chronically ill.

I do hope though that this latest virus or whatever it is, eases up a little. I think the diflucan might be making me a little nauseated. Something is.


  1. I'm so sorry to hear that you're feeling so bad right now - physically and emotionally. Your words really struck me because I have felt exactly that way myself at times. I think all of us with CFS can relate because we all get trapped in despair at one time or another. At those times, it always seems to help me to know that I am not alone, that others have felt the same way and experienced the same things as me.

    To help you know that you are not alone, here are some of my own writings about such times:
    (an essay about the emotional stages I've gone through with this illness)
    (a blog entry about despair)
    (a blog entry about a wonderful book about hope that helped me a lot)

    You can also click on the "emotional coping" tag on my blog to read more of my struggles to cope with the darker moments of CFS.

    And, as for the physical side of things, ask your doctor about Famvir or Valtrex. During my Lyme treatment, I felt better within 24 hours of starting Famvir! When you have both CFS and Lyme, viral activation is a huge problem.

    Please know that you are not alone and things WILL get better.


  2. I am so sorry you are going through so much pain right now. It is a very difficult walk for those who suffer with CFIDS and/or Lyme. I know I have felt the same way at times myself ~ and have friends with CFIDS who have expressed the same thing. Thank you for being so honest with your feelings and thoughts. It is a gift for the rest of us.

  3. Hi,

    sorry about your condition, sincerely

    i'm battling against health problem including chronic fatigue too, though i seem to be able to do more things, though i feel like crap most of the time while doing it :/

    i just discovered D-ribose as a supplement that help ATP (energy) production in the body in cfs patient, who tend to have poor mitochondrial function

    i've been on it since a couple of days now and it's too soon to tell if it's working but many reported great success in improving fatigue

    you might want to have a look at this, i take a generic D-ribose that i buy online

    wish you the best for the future