How it Began – Part I: The Flu Shot

File:Yellow-Fronted Canary.jpg

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

You say you want to spend the winter in Firenze
You’re so afraid to catch a dose of influenza
You live your life like a canary in a coalmine
You get so dizzy even walking in a straight line
“Canary in a Coalmine” – the Police

I had never had a flu shot.

I have had needle phobia as long as I can remember, and that had always kept me from getting the influenza jab.

But the winter of 2002-3, while we were living in Michigan, I got a terrible case of the flu. I was abjectly miserable for at least a week, and my fever got as high as 102.5. So going into the next winter, when we were living in California, I decided I wanted to get a flu shot and head that possibility off at the pass.

And so that is how, on December 8, 2003, I came to be standing in the hallway of my office at the California Tree Fruit Agreement in Reedley with my co-workers, waiting to be jabbed in the arm. I remember telling myself, “It’s just a shot; it’ll only hurt for a moment,” and chatting with those around me about kids and adults with needle phobia. I hadn’t been feeling so great that morning – I felt a little bit like I was getting sick – but by the time the afternoon rolled around, I was feeling a bit better and decided to go ahead with the shot. After all, if I didn’t, I was going to have to pay out of pocket instead of getting it for free, and I would have to get my nerve up all over again.

When my turn came, I sat down in the chair in the conference room, the nurse swabbed my arm and gave me the shot. It stung a little, but not much, really. Proud of myself, I walked back to my desk and reached for the phone to call Chimp to tell him I’d successfully made it through.

Before I could pick up the phone, my left hand started going numb, then a moment later, my right. In a flash, my arms were numb to the elbows, and the sensation was quickly rising. I grabbed my water bottle off my desk and started walking back to the conference room. As I walked, the numbness began ascending in my legs. By the time I got back to where the nurse was, I was quite disoriented.

“I’m not feeling good,” I said to her.

“What’s going on?”

I couldn’t find the words. What was going on? I hardly understood her question. The numbness was in most of my body now, and my vision was starting to tunnel. There was both a ringing and a roaring in my ears. Fighting the confusion, I somehow choked out, “I feel faint.”

“Get down,” the nurse ordered, and jumped up to get me on the floor.

Once I was on the floor, the faint stopped progressing. I lay there for a bit as she finished giving shots to the rest of my co-workers. Somebody went to the break room and brought the cushions from the couch in for me to lie on. After half an hour or so, feeling a bit more normal, I sat up, but as soon as I did, the whole thing started all over again. This happened a couple times, and the nurse said, “Your blood pressure is too low. I want you to drink that entire bottle of water. If you were in the hospital, I’d be hooking you up to a saline drip.”

Wanting to avoid the hospital, I applied myself to drinking. After a couple hours, I started to feel a little bit more normal. The numbness had gone away, at least, but when I was finally able to get up, I was dizzy and felt strangely exhausted. I struggled to get myself to the bathroom and to pack my stuff up to go home. A co-worker volunteered to follow me home in her car to make sure I got there okay. I dragged myself to the car and drove home.

The next morning, we had a grower breakfast, which meant I had to drive down to a restaurant south of Reedley to have a morning meeting with a group of our members. I felt terrible, but I was only just over a month into my job, and I didn’t feel like I could call out sick. I pulled into the parking lot full of pickup trucks and walked into the restaurant. When I found our group and walked up to the table, my co-worker Dale’s jaw literally dropped. Later in the day, he said, “Boy, you looked just awful when you arrived at the breakfast this morning.”

“Thanks,” I said. I knew he meant it sympathetically.

For the next three days, I was exhausted, dizzy, woozy, and I felt like I actually did have the flu, body aches and all. I was really tired for another couple weeks – in a way that was later to become very familiar – before I really started feeling like myself again.

My co-worker Dovey told me that she, too, had had a vasovagal reaction to a shot before. She’d climbed into her car to leave the doctor’s office, and before she could start the car, she woke up some time later with her head resting on the steering wheel. I found out that it wasn’t uncommon in young women, but nobody knew why it happens. I decided that was probably my last flu shot. I chalked up my reaction to the shot to my then already long-known tendency toward weird and prominent side effects to everything from caffeine (extreme jitters and irritability) to cold medicine (non-drowsy types: awake for days; other types: asleep for days) to Xanax (anxiety).

At the end of that month, between Christmas and New Year’s, we went back out to the East Coast to visit friends and family. Chimp’s mom had the flu when we arrived in Maryland, but no matter. We came right in, I cooked some dinner and sprayed Lysol on switches, doorknobs, and other touch points, and we had a fine time with them. When we got back to California, I had a sore throat. No matter, I thought; the climate where we lived was quite dry, and I often had a sore throat seemingly because of it. I pulled out the humidifier and set it up. The next morning, after sleeping for 12 hours, my throat was still sore, and I felt really tired. No matter; I thought – I must have slept too much. Then I had a bit of a temperature and the next day my throat was still sore. At that point, I thought maybe I had strep. We went to an urgent care place on a Sunday night.

Now, if you were a comedy writer and you knew the events I’ve already described here, what would you have me get sick with at this point? Scabies? Eczema? Chicken pox?


That’s right. When the jocular doctor came in to see me, he asked about my symptoms, took a throat swab, and then said, “Let’s culture this, but I’ll tell you now that you have some signs of the flu.”

“But I had the flu shot,” I said.

“Well, it doesn’t cover every strain,” he said, which I already knew – and then he said, “It didn’t cover the one we’ve been seeing most often this winter and another one is emerging now.”

There’s no justice in the world, I said to him; I not only got a vasovagal response to the immunization, but I got side effects for three days afterward, and now I get the flu anyway. When he came back, he said, “No strep – looks like you have the flu!”

Then he turned to Chimp and said with a chuckle, “Watch out – she’s contagious!”

He gave me a Tamiflu script, which I went home and took with dinner – and which promptly made me extremely queasy. I looked at the prescribing information. Upset stomach: 9.9%. Another side effect. Well, I was nothing if not consistent.

Go to Part II.

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20 Responses to How it Began – Part I: The Flu Shot

  1. Sharon says:

    I wish someone could read your wonderful recounting and say – Aha! it was Colonel Mustard in the library with the lead pipe! and then proceed with the antidote.

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  5. Jenime says:

    Did you catch this recent CBC special on the Tamiflu scam? Its incredible:

    The Tamiflu Scam pt.1

    Part 2:

  6. Jenime says:

    I’ve done a lot of research into Novartis that I’d love to share with you sometime, email me so we can set up a chat. I did a doc project on vaccine makers when I was still able to go to film school.

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  9. Sarah says:

    Wow. I read through your story and watched the video. I’m so sorry you have to deal with this and I pray that you find a cure for it. Do you think the cause of ME/CFS is directly related to the flu shot? Have you heard of others that got it after getting a shot?
    Have you heard of MMS(Miracle Mineral Solution discovered by Jim Humble)? I’ve heard that it is curing people of many “incurable” diseases. I just did a quick search “me/cfs mms cure?” and it looks like there may be some success stories there.
    All the best!

  10. EROSE says:

    Hi Jocelyn,
    I just came across your blog on freshly pressed! Congrats! I loved your post “My Secret Identity” – it was beautifully written. I also just started reading your story about becoming sick – I haven’t finished yet, so forgive me if I post this prematurely, but I noticed you said that the causes of vasovagal reactions (also known as neurally mediated syncope, neurocardiogenic syncope, and classified as a form of dysautonomia) are not understood and that they’re common in women. While you’re right in that they are common in women, a recent study suggests a gender breakdown of 48% men and 52% women. So not really as female-oriented as previously thought. Also, while medical research has identified no unilateral cause, there are a variety of well-known triggers including neurological triggers, cardiological triggers, metabolic triggers, and psychological triggers. I only mention this because in my experiences, syncope is met with significant stigma and sexism in the medical community and among the population at large. In other words, while there are very real neurological, cardiological, and metabolic triggers to my syncope, doctors treat me like a hysterical, weak, and anxiety-ridden girl that does not have a “real” medical condition. In reality, neurocardiogenic syncope has very real consequences in my life, and even more extreme consequences for those who have severe neurocardiogenic syncope.

    I know this is not your intention, of course! 🙂 But I believe it’s important to clarify a lot of mis-information surrounding vasovagal reactions. I look forward to reading more about your journey and wish you all best!

  11. snowgood says:

    You don’t sound at all bitter, how do manage to ‘sound” so calm?

  12. Matt Blake says:

    I love the doctors comment at the end, brilliant, that cracked me up.

    • Jocelyn says:

      Me too, though I think I was pretty grumpy at the time. It’s not often you get a joke out of a doctor, and I have a great deal of experience to support that!

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  14. Carol Lefelt says:

    I just found your blog and haven’t finished reading your onset story yet, but have to tell you that I’ve been sick now with ME/CFS for 14 years, and it all started in 1999 after a flu shot when I was 55. I’ve written my own account and am thinking of starting a blog, but I never knew about someone else with a similar experience. I look forward to reading about more of your experiences.

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