How It Began – Part II: Chicago

Chicago Skyline at Night – HDR by Michael Tuuk

This is the second entry in my ME/CFS “origin story.” Here are Part I, Part III, and Part IV.

The rest of the winter of 2003-4 passed uneventfully. Come spring, I was in Chicago for the Food Marketing Institute trade show for work at the end of April. My mom came up to Chicago from Indiana to have a visit with me.

She and I went out to dinner at a middling Indian place, recommended by the concierge at the hotel, a tall, beefy man with an insincere smile. The restaurant didn’t have much to recommend it, and I wished I’d sought out a better place on my own. My entrée wasn’t as hot as it should have been; the relishes weren’t as good as they should have been. The papadums were overly greasy and undercooked. No matter; it was just nice to have dinner with my mom.

After dinner, we took a walk up and down Michigan Avenue. We got to one end of the main shopping strip, crossed the street, and came back the other way. I started to feel like my feet weren’t landing where they should, as if I were stepping in sand. We were walking across a bridge that had grating underfoot. I was trying to keep my eyes forward as seeing open space beneath my feet gives me furious vertigo.

A fast-talking “homeless” guy approached us with copies of The Onion. I normally know better than this, having lived in NYC, but he had a good spiel and I decided to give him a couple bucks. Long story short, because it’s still embarrassing to me to admit I got taken this way, but he talked me into him giving me change from a $20, and of course, I didn’t get the change he promised me and he was gone in a flash. I was chagrined. I felt incredibly stupid. I had seen scams like this when I was 18 and had always been wise to them – what was I doing falling for it when I was 28? We made our way back to the hotel. We had planned to go back out, but when we got into the room, I told my mom I felt wobbly on my feet and I was going to get ready for bed. I put the copy of The Onion in my empty suitcase in the closet, where I wouldn’t have to look at it and be reminded of my embarrassment. I closed the suitcase and the closet. I tried not to look at myself in its mirrored doors as I did so.

I got ready for bed. About an hour later, I was suddenly gripped with terrible shivering, so bad I could barely speak, and an overwhelming feeling of panic. I called Chimp, scared out of my wits for some reason, all out of proportion to the shivering. I knew, somehow, that something was seriously wrong. The violent shivering went on continuously for an hour. After an hour, we walked to the Northwestern hospital across the street. It was raining lightly. The cool air felt good. A nurse took my temperature and blood pressure and found nothing out of the ordinary. We went back to the hotel.

We got in bed. My mom fell asleep. I listened to her breathe and tried to sleep. I was too wound up from the fright of the dizziness and shaking. Eventually I passed out. I woke a couple hours later, soaking wet with sweat. I got up to change my pajamas and discovered I was having gastrointestinal upset. It was bad. I thought I had food poisoning from the lukewarm entrée. I stayed in the bathroom, miserable, for a couple hours, changed out of my sweaty pajamas, and got back into bed, where I finally slept for the rest of the night.

The next morning I went to a seminar at our data provider I’d been previously signed up for, though I dearly wanted to skip it. I felt weak that day, and for about half of the day after that. Then I felt better. I walked the show with a former professor of mine, feeling a little tired but not bad. He gave out before I did, though I was relieved when he did, because I needed to rest too. That day and a half was a normal recovery time from something like that for a healthy person. Everything seemed to go back to normal. I had just gotten food poisoning. I meant to tell the smirking concierge but never remembered to do so.

But over the next month, things started to fall apart in small ways. I didn’t realize it was happening, and looking back at my recipe weblog, you wouldn’t be able to guess. I was cranking out entries and entrées at a furious rate. I was working a lot getting data and new publications ready for the stone fruit season. I had more travel coming up at the end of the month – back to Chicago for a meeting with our reps – and one day in the week before that I said to our receptionist that I felt crapalicious. I was coming down with a cold. That week I ate something I shouldn’t have – something I had left in the fridge one day too long, maybe – and maybe I gave myself food poisoning again. That’s what it seemed like, because Chimp ate it at the same time and the same thing happened.

And then I had to go to Chicago again. The night before we left, I was trying to pack my suitcase at 11 p.m. and I was much more exhausted than I should have been at 11 p.m. I was sitting on the floor by my dresser, pulling pajamas out to take with me. I leaned against the dresser. I had been working a lot, but I could hardly pick myself up off the floor. I just thought it was the cold I seemed to be getting. It was a feeling that was about to become very, very familiar.

I know that copy of The Onion was not a smallpox blanket; I know the guy carrying it was just a small-time hustler, not a disease vector. I don’t know exactly why I shivered that night, whether it was food poisoning or something else. My mother brought it up a year on; we hadn’t talked about it since that night.

“That situation…the guy on the street…it was just evil,” she said.

All I could say was “Yeah…you’re right.”

Go to Part III.

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14 Responses to How It Began – Part II: Chicago

  1. Sharon says:

    The memory of the hustler is one that it unlike any others that I have. He was evil. He evaporated from the middle of the bridge after taking Jocelyn’s money.

  2. Jack says:

    Jocelyn, you are such a fantastic writer. I enjoy reading your entries, feeling what you felt, living parts of your life with you. I haven’t forgotten the croissants BTW. You will get them – it’s just way out of my way in the morning, and I typically don’t have time on the way to work.

  3. Pingback: How it Began – Part III: Chicago Once Again | No Poster Girl

  4. Pingback: How it Began – Part I: The Flu Shot | No Poster Girl

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  7. Paul says:

    My ME started after a flu jab too, although the initial reaction was not quite as severe as yours. . I wasn’t feeling 100% well when I had it either.

    Thank you for such a great blog. i have really enjoyed reading your posts.

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  9. Jule says:

    I got FMS after a sever infection when I was 8 years old… The doctor that diagnosed me theorized that the infection, along with the trauma of my Grandma passing away and the multiple surgeries that followed triggered it. And my first ME symptoms came about shortly after I got the flu, bronchitis, pleurisy, and Mono all at once when I was a junior in high school. The shivering, the hot flashes, the dizziness, the nausea… all of the symptoms you are talking about here are part of the daily battle for me. I hate it that you have these illnesses, but I am happy that you are still at yourself enough to write and maintain a blog explaining all that goes with the day to day life of it. Thank you!

  10. snowgood says:

    You still sound calm, I’m not sure how you do it. I can cope with anything, except illness. You’re a star.

    • Jocelyn says:

      Thanks, snowgood. What it really comes down to is that I’ve had quite a number of years to adjust to this now. It was terrifying at the time, but now it’s just the way my life is. I also know that being angry is one of the biggest energy sucks there is for me – it’s enormously stressful, and so I honestly try to manage my emotions so as not to harm myself. It also helps that the one absolutely rock-solid thing in my life, despite the illness, is my marriage, which brings me enormous happiness. If I didn’t have that, I probably would not be able to be so sanguine. (See my husband Chimp’s entries here and here if you’re interested in his perspective.

  11. E. Milo says:

    My How It Began post sounds a lot like yours with the vertigo, the terrifying chills and the drenching sweats ( ). I’ll have to do a pre-part 1 post because mine, too, started one week after the flu shot.

  12. Pingback: Roller Coaster (of Health) | No Poster Girl

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