Friday, May 15, 2009

Good-bye to This Week

Or perhaps I should say "good riddance!" My week started out great, after enjoying my family's visit and definitely feeling a little better. I actually began to exercise again this week - in tiny, tiny increments. On Tuesday, I did 13 push-ups, 11 flys, and 20 pull-downs - all at different times of the day with lots of rest in between. On Wednesday, my muscles were so sore I could barely move, and I was a little run-down, but OK.

The rest of the week just went downhill, though. It wasn't anything that happened but more just my state of mind. I've been feeling hopeless and overwhelmed and lacking in confidence and motivation.

In part, everything about writing feels futile right now. It's a terrible time to be a freelancer. Even in good economic times, freelance writing is a tough job. You spend so much time and effort writing pitches and send off dozens of them with high hopes, feeling like you came up with the perfect idea for that publication. Then, you wait - often many months - for a reply. If you're lucky, you get a single line on a form rejection sent back in your SASE. Lots of pubs don't even bother doing that.

I'm also frustrated by my very limited energy. With CFS, I have such limited productive time each day, and, if I don't do something concrete toward my goals - like sending out another pitch - then I feel like I've wasted my precious energy. In all honesty, the writing I'm enjoying the most right now - this blog and my book reviews - is writing that I don't get paid for, so I feel guilty for time spent on my blogs.

Several times this week, I had the urge to go outside and RUN. Hard exercise is such a great remedy for these kinds of feelings - to go out and pour all your energy into working and sweating and completely clear your mind. Of course, that's a pipe dream. I was thrilled this week when I managed to walk around my neighborhood without stopping to rest (for the first time in many months).

Ken and the boys are at soccer practice this evening. I'm home alone, and the other thing I'd love to do is to drink an ice cold beer or a nice glass of red wine. But, of course, that's out, too. Besides the fact that alcohol makes my CFS worse, it's a major no-no for Lyme (the little Lyme buggers feed on alcohol).

So, I've made a glass of decaf mint iced tea, but it's not quite the same. I think part of my problem is simply loneliness and isolation. Even though I felt better this week, I spent every day at home alone, trying (without much success) to get some writing done.

I'm glad the week is over, but I'm honestly not looking forward to the weekend, either. Maybe just pouring out my feelings here will help some. Thanks for listening.


  1. Martine Channon9:01 PM

    Sue…I ABSOLUTELY hear you, and want you to know (which I know you do, in your heart of hearts) that you are not alone; we're all out there fighting in the trenches along-side you every single day. Your blog and your work are a great help to many who struggle with this insidious disease in all its morphing manifestations. Sorry you had a tough week, and it's great to "hear someone say" that they can't even have a cold, frosty beer on a spring Friday evening to take the edge off. I do it anyway sometimes, and I pay the price. Chin up…Best, Martine

  2. There is so much loss with CFS. Michael J Fox said of his Parkinsons "It's the gift that keeps on taking."

    We don't have any control over it which is what I think we all find the most difficult. This recession is touching all of us too - ill or not.

    And you're right, it is so isolating. You can't escape to a busy shopping mall or an evening club. I miss the social side of work the most; the office banter and petty politics, the teamwork and sandwich runs.

    I hope something shifts for you this weekend. Hang in there, this too will pass . . .

  3. Hi Sue,
    I hope you get some needed relief this weekend. My thoughts and prayers are being sent your way.

  4. Sue, I am sending good thoughts and a prayer your way. I am nodding my head in understanding with what you are saying about the isolation, loneliness, and plodding on with little energy for each day.
    I am sorry to hear about your difficulty with freelance writing right now in this economy. What you do for a living is my "dream" but I often get stuck in the fear of what to do first :)Hope it picks up for you soon.
    Your writing is an encouragement and your ability now to walk or do more is also encouraging. You may not be earning any money writing on your blogs but many of us sure are happy you have them!
    Hope your weekend turns out to be a nice surprise!!!

  5. Thanks, Martine! I knew you'd understand, after your comment earlier this week about not just making the donuts but chasing them! Thanks for the kind words and the reminder that I'm not alone.


  6. You're so right, Jo - the lack of control is a big part of it. I also like a lot of what Michael J. Fox says. I taped and watched his "Incurable Optimist" special last week, and I want to read his latest book.


  7. I like how you said, "Goodbye to This Week." Sometimes you just have to let it go. Staying in the moment -- whether it is enjoying a good day or wallowing a moment in the struggle -- is something I've learned from this disease.

    What would I do without you and your CFS blog? You should never feel guilty for doing so much good for other people.

    Counting my blessings is always a good way for me to transition out of a blue mood. And guess what? You are always on my list. :)

  8. It sounds like a tough week. I too am glad you are blogging. Your blog was one of the first blogs I found when I was first diagnosed and it was a godsend. It really helped me (and still does).

    We're all right there with you cheering you on!


  9. Wow, all this support has really been amazing! You guys are all great. Believe me, I get just as much out of writing this blog as I give. Having a group of friends who always understand this crazy illness has helped me through many hard times, including yesterday.

    I'm feeling a lot better today and am enjoying my weekend.



  10. I'm with you on the goodbye to last week! A good run would really help the mental side of things, wouldn't it? Not to mention a glass of wine (I've been known to do that, anyway - but rarely). I hope you have a better week, get something accomplished with your writing, feel less lonely and continue with the limited exercise.

    Hang in there

  11. Hi Sue,

    So sorry that it was a rough week. You hold up through it all so well. My thoughts are with you. It sounds like the weekend got better - which is good!

    Take care,

  12. sue,the cdc is deciding their strategy for the next five years regarding what research will be done. If you register by May 20 at 202 690-7650 or fax 2024014005 you will be able to call into the meeting and have five minutes. We must stick together to let them know there are 100's of thousands of us out there. i have three children my self ages 6 8 and 10. Look at

    The following is from ProHealth about the meeting +++++++++++++++++++++++++++++++
    "Just as with the recent meeting at the CDC, people can give a 5-minute presentation over the phone. Unfortunately I think at present people can't listen in over the phone but perhaps this might change if enough people asked?


    The Department of Health and Human Services Chronic Fatigue Syndrome
    Advisory Committee (CFSAC) will meet next on May 27-28, 2009, in
    Washington, DC The official announcement of the meeting from the
    Federal Register is copied below. Please note that the Centers for
    Disease Control and Prevention will release its draft of the 5-year
    strategic plan for CFS research at this meeting. The draft will be
    posted at and public comment is invited until June 30,
    2009. See more information at

    For more information about the CFSAC, visit
    The CFIDS Association's
    meeting reports, dating back to 2003, The Association has
    set up an Action Alert about the CDC research plan. You can access it