Monday, March 02, 2009

Seven Years Ago Today

Seven years ago today, I suddenly developed CFS and my life changed dramatically, though I had no idea at the time.

March 2, 2002, was a day like any other Saturday in my life: I took a step class at the Y while the boys took their swim class, cleaned the house, played with the kids, and cooked a big dinner. That evening, I was unusually tired and had a severe sore throat. The next day, Sunday, we had planned to take the boys on a day trip to Baltimore. Even though I wasn't feeling well, we stuck with our plans.

I vividly remember that day in Baltimore. My throat hurt so much it felt like I had swallowed barbed wire, and I kept popping hard candies into my mouth to soothe the pain. I woke up feeling tired that day, but, more than the exhaustion, I remember feeling a weird, foggy sense of detachment, like I was existing in another dimension. I remember walking through the National Aquarium and feeling so weak and out of it that I was leaning on the handrail near the shark tank, barely aware of what was going on around me.

I think the strangest thing of all about the abrupt onset of CFS is that you have no idea what's going on at the time. I looked back at my 2002 journal this morning, thinking that there would be a dramatic shift from March 1 to March 2, but there's no indication of that. I just thought I'd caught a virus and would be fine in a few days. And, here I am, seven years later, doing a little better but still sick. Isn't it bizarre?

Guess what we're planning to do next weekend? We're going to Baltimore for a mini overnight trip. We often have some sort of little late-winter getaway this time of year, often to Rehoboth Beach, but this particular trip, this week, to Baltimore, feels like a small victory to me. The boys were only 4 and 7 the last time we went there, so they really don't remember it, but I do. We will go back to the Aquarium, but this time, I know what to expect, and I'll be able to enjoy it, on my own terms. I may still have CFS, but I have reclaimed my life.

P.S. If you want to read more about how my CFS began and how I coped emotionally during those first years, take a look at the essays on the CFS page of my writer's website, My Story is a detailed essay about getting sick, finding a diagnosis, and learning to live with CFS; Finding a New Normal is a shorter essay about acceptance that includes excerpts from my journals at the time; and Sick Mommy is about the unique challenges of being a parent with a chronic illness.


  1. Dear Sue,
    You have indeed reclaimed your life. Congratulations on the upcoming mini-trip to Baltimore. The story you tell of that March day in 2002, is eerily similar to mine in May of 2001 only my husband and I were on the first day of what was to be a three week stay in Paris. Not being world travelers, this was a special trip, but one which I spent in bed in the apartment I'd rented and my husband spent wandering the streets of Paris alone. Thanks for writing today.

  2. Thanks, Toni -

    I have always been amazed at how similar all of our stories are, stories of people of all ages, from all over the world and, yet, CFS seems so remarkably similar between many of us. It's one of the reasons why writing a blog and reading others' blogs is so meaningful to me.


  3. Congratulations on how far you have come. I personally find your story very inspiring, as I am still struggling to find balance and flexibility and joy in my life. I agree, there are so many similarities -- I think that's why your story is one so full of hope. Thank you for sharing!

  4. I'm so glad that you are able to write something positive about your (what I jokingly call) sick-aversary. The fact is that you are able to accomplish so much, and that you have figured out some ways to deal with this hand you've been dealt, and I'm glad you share all of that here. Have a great trip!

  5. I love how you say that you have "reclaimed your life." You have come a long ways. In reading your "My Story" it's great to see that in living within your limitations you're enjoying your life. You are an encouragement!

    I hope you have a great trip to Baltimore.


  6. I know that this disease is just crappy and who the heck knows why it happens. There is one thing, however, that you can be sure of and it's that you have been a gift to many who are suffering. Your gift of writing and compassion has helped us more than you know.

    Thanks for your wonderful written word and, for goodness sakes, keep it coming!

  7. Wow, Lori and everyone else, thank you so much for your amazing and kind words. You can't imagine how much that means to me.

    Writing is my passion, and I've always wanted to help people in some way. Helping others with CFS somehow makes our own experiences seem less meaningless and our "new normal" feel even more blessed. Thank you -


  8. Interesting blog you have here

  9. Thank you for your wonderful writing! It is amazing reading thru your blog, how similar our stories are... What a blessing to have found your site!

  10. Sue,
    It's amazing you can pinpoint it so specifically! Mine was slow progressing so I don't have a definitive time. I still take encouragement from your progress and how you still live your life - thanks for that!

  11. Pamela -

    Actually, my experience is pretty common. The research shows that about 75% of people with CFS had an abrupt start like mine. Dr. Bell told me he always knows someone definitely has CFS when they tell him their illness began on a certain date. Just another bizarre thing about CFS, huh?


  12. Hi Sue,
    I just found your blog and joined your followers. My illness started about 8 years ago, also suddenly. Like you said, "I thought I'd caught a virus and would be fine in a few days... "

    Fast forward to today, and I've adjusted to a different lifestyle. I thought you'd enjoy the recent article that my newspaper wrote about me -

    I feel that I have also reclaimed my life. Those first few years were tough, and scary at times. We've learned to adjust, and it's even helped a few family members realize the importance of simplifying their lives.

    Thanks for sharing your stories!
    Pam :)

  13. Hello Sue

    I’ve been meaning to write for so long to thank you for you open, honest and hopeful blog. I have learned so much from your comments and links. I’ve had CFS from Sept 2012 which began with a virus and terrible cough that went on for 6 weeks and although the cough went I just got weaker and weaker till I had to leave work and by Christmas was lying on the lounge all day. I’ve slowly regained strength but still need to rest half my day. When I found your blog I was ‘fighting’ CFS having no real understanding of how to cope with this condition and feeling so embarrassed and bewildered to have a condition that others don’t understand either. I have to a point, found a ‘new normal’ though I really miss being more involved in life. Normally being a cheerful, hopeful person I have had to learn to be that again in the face of this challenge. My heart felt thanks to you.

    Jen Australia

    1. Thanks so much for your kind words, Jen. It really means a lot to me to know that my blog has been helpful to you - it is a long and difficult journey to learning to live with this illness, but you can still live a life filled with joy and hope. I just wrote a new article for ProHealth on exactly that topic, so your comment was timely. I'll post a link here on the blog when they publish it next week.

      Thanks for taking the time to comment - nice to "meet" you.