Vaxxed Part Two

On Friday, I got my second dose of the Pfizer COVID-19 vaccine. The vaccine side effects were definitely more intense this time, but not unmanageable. I am so glad I was able to be vaccinated, and I am documenting the experience so that other people with ME can get a sense of what to expect.

My husband and I had no difficulty scheduling our second shot. The date was set by the county, four weeks after the first dose, and delivered at the same clinic location. Once again, my husband and I were able to get appointments in the same time slot.

As I had before the first shot, I took an extra dose of my H1 histamine blocker one hour before. I have mast cell activation syndrome, and The Mast Cell Disease Society recommends that patients premedicate with their H1 blocker in this manner. I also skipped my beta blocker the night before, on the advice of my doctor. Be sure to check with your doctor about any changes to your medications prior to vaccination.

Upon arrival at the high school vaccination clinic, I noticed two things right away. First, there was an increased police presence compared to our first time. I don’t know if that was due to the mass shootings in Atlanta and Boulder, or due to the number of people they expected onsite that day. Second, there were a number of wheelchairs parked at the entrance, and I later saw a volunteer pushing someone through the line in one of them. I was really happy to see that these were available for people who might not usually need a wheelchair but who would be unable to walk around the clinic site.

Another improvement was the clear marking of walking lanes and distance markings. Volunteers gave better instructions about where to go. The logistics seemed to be smoother. Our actual waiting time for registration and then vaccine administration was shorter than last time as well. The observation area had also been improved. The high school bleachers were folded up and the entire area was dotted with plastic chairs in ones and twos.

Getting the shot was quick and completely painless. The volunteers have optimized the whole thing for maximum efficiency. Syringes are pre-loaded. One volunteer handled data entry and marked my vaccine card, while the nurse asked a few questions about whether I had ever reacted to a vaccine. Even the bandaids to cover the injection site were partially opened and waiting in a line on the desk. The whole thing went so fast that I hardly had time to thank the nurse and volunteer.

While we waited in observation, my husband turned to me and said, “Where’s the nearest Krispy Kreme?” (We had to look it up, and the answer was 30 minutes away. We didn’t go.) After I texted a picture of my vaccine card to my family and friends, I spent a few minutes just watching everyone in the high school gym. The noise echoed around the space, and most people seemed to be in a good mood. I thought about the video of Yo-Yo Ma playing at his vaccination clinic after receiving his second dose. As the nurse who administered his vaccine said, “It just brought that whole room together. It was so healing.” We need that in every clinic! What a tremendous gift immunized musicians could give to their communities. I think it could do more than lift the mood of everyone present. Vaccination is not just a personal healthcare decision. It is an act of love for each other. Perhaps music could help us feel that in a way that the necessarily fast-paced mass vaccination clinic environment does not.

After our self-timed 15 minutes was up, we thanked the volunteer in the observation section and headed to our car. It wasn’t until I got to the parking lot that I started to cry. It finally hit me: my husband and I are going to be ok. Ever since March 2020, when I read this first-person account of caring for a spouse with COVID-19, I have lived in terror of my husband getting sick. The COVID-19 vaccines available in the US are highly effective at preventing people from getting COVID-19. And no one who received a vaccine in the clinical trials was hospitalized or died of COVID-19. It is true that there is a lot more to learn about the long-term effectiveness of the vaccines, but for now I am confident that neither of us will get seriously ill from COVID-19. The relief of that hit me, and I cried.

When we got home, I had to pay up on a bet. Late last year, my husband and I made a bet about when we would be fully vaccinated. I said it wouldn’t be until summer. He said we would be vaccinated by April 1st. The prize was a batch of homemade chocolate chip cookies. My husband doesn’t bake, and I was really looking forward to watching him learn to make cookies. But I lost! I knew, based on my experience with the first vaccine dose, that the side effects would hit me quickly. I planned ahead and made the cookie dough the day before, and as soon as we got home, I scooped it out and baked the cookies. (Homemade chocolate chip cookies are better than donuts anyway, don’t @ me.) That was a smart choice, because the side effects did not wait long.

Less than four hours after receiving the vaccine, I felt a crash coming down on me like a heavy curtain weighing thousands of pounds. I had trouble putting coherent sentences together, and I couldn’t read or knit. My resting heart rate was elevated at least 15 beats per minute higher than normal. I listened to some music, ate some dinner, and went straight to bed.

The first vaccine dose had given me muscle and joint pain, as well as severe malaise for about 36 hours. The second shot caused pain in my lymph nodes under the dose arm, as well as overall muscle pain. I was feverish, and awoke with night sweats the first night. The muscle pain was severe enough to wake me up the next morning, and prevent me from napping all day. My resting heart rate was still higher than normal, but not as elevated as the hours right after the vaccine. I also had difficulty staying upright, even in a recliner, although that did improve as the day went on. In the evening, I had an episode of vasovagal syncope without fainting, possibly triggered by gut cramping.

When I’m crashed, I feel like I’m wearing a football helmet and pads made of concrete. That feeling persisted into the second day, even as the other vaccine side effects improved. I couldn’t do any of my routine tasks, and the heavy aches stayed with me. It was a difficult weekend. Fortunately, my husband had no side effects at all.

Every day since has been a little bit better. My arm still hurts sometimes, and my headache comes and goes. It’s now five days since my vaccination and I think I am about back to baseline. That’s worse than a healthy person would expect, but not the worst case scenario I feared.

I strongly encourage people with ME (and the people they live with) to consider getting vaccinated for COVID-19. Based on my experience, and that of my friends with ME, the side effects are intense but not unbearable. Crashing for a week is far better than moderate to severe COVID-19. That being said, please consult with your doctor before making the decision. You may need to adjust medications prior to vaccination, especially if you have mast cell activation syndrome. Your doctor is best placed to advise you on your individual circumstances and whether you are well enough to take the vaccine. I know at least one ME patient who has been advised to wait, so discuss your options with your doctor if you have any concerns at all.

These vaccines are an incredible achievement. Prior to COVID-19, the fastest vaccine to market took four years. It’s frightening to imagine the death toll if we had to wait three more years for a COVID-19 vaccine. To have vaccines this effective, this safe, and this quickly is proof of what we can achieve when we invest the money and the effort in a scientific problem.

There is one more thing I need to do to ensure I am fully immunized against COVID-19: I have to wait. A person is not considered fully immunized until two weeks after the second dose of Pfizer or Moderna’s vaccine. And once I hit the two week mark? I am going to hug my Dad for the first time since February 2020.

Thank you, Science. Thank you.

Credit: The Amplifier, amplifier.org
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11 Responses to Vaxxed Part Two

  1. Jackie Schultz says:

    Not all of us are so lucky. I suggest you go to facebook group ME/CFS and Covid V’s.
    Many if us at 25-30 yrs diagnosed are having severe relapsive episodes, many bedridden, housebound. I am 68f, diagnosed since 1997, onset 1978 CMV, Guillian Barre. I was doing well before M v. Now 8wks, relapse. This is happening everywhere. We need to speak out about what is happening. 10% or so + long haul syndrome CDC for long covid

    • Jennie Spotila says:

      I am very sorry to hear this! I’ve been sick for almost 27 years. I hope these relapse episodes lift soon. It makes sense that some immune systems will react strongly to the vaccine and trigger a crash in some people.

      • Stephanie Davies says:

        It’s just like everything else. We are all so different. I’ve been sick with this craziness for 33 years. Many things cause me to flare or relapse but I decided this was worth it. Of course that is a personal medical decision. I knew my immune system was going to be fighting (which is good), but I know that means second shot =relapse.

  2. Lynn P. says:

    Thank you for sharing your experience, Jennie. I’m a little nervous about how my body will react to the 2nd vaccine. I had my 1st one 2 weeks ago (Pfizer) and am scheduled for my 2nd one next week.

    The day after my 1st one I felt horrible – muscle pain, headaches at numerous places on my head, very extreme fatigue. The 2nd day I was still tired and had a nagging headache. By day 3 I felt pretty much back to my “normal”.

    One interesting thing is that I had absolutely no pain at the shot site, not even as the shot was being given.

    I’m glad you’ll be able to hug your dad soon!

    • Jennie Spotila says:

      I know one person with ME who had less of a reaction after the second shot. It’s best to be prepared, so I had made sure we had very easy to fix food, etc.

  3. Denise says:

    I am glad you are both are on your way to full vaccination status.
    Because ME impacts your life so much I think your estimation of when vaccination would be possible was very reasonably influenced by the lengthy delays in science as related to ME. As a result, I would have quibbled with paying up on the cookie debt…. 😉

    • Denise says:

      I forgot to say —- I am very, very glad you will able to hug your dad. Bask in each and every hug you can give and get from him! It’s an amazing feeling!

  4. Stephanie Davies says:

    What a wonderful encouraging story. Thank you for sharing. I’ve received my 1st Phizer shot and had similar reactions. I was not complaining. The only way I can describe it is that after my vaccine a sense of calm came over me. I know the second shot in a couple of weeks will be worse but I really don’t mind. I also know that I have a month to go for full vaccine efficacy . That’s ok too. I’m with you. Thank you Science, scientists, supply chain, Walgreens, etc. I was so impressed with how efficient Walgreens was. My state got a slow start but it’s getting better. Cheers!

  5. You said you had vasovagal syncope from gut cramping. You mentioned it as if it wasn’t that big of a deal, but I have this happen and it’s horrific and scary and we usually have to call the paramedics. Do you have any tools that you use to stop these from being so severe? Mine are caused by bowel cramps, pelvic floor spasms and period pain. Oh and congrats on your vaccinations! 🙂 I can’t risk it right now, unfortunately..

    • Jennie Spotila says:

      Those episodes are really scary. I haven’t actually passed out during one of them in many years. The symptoms resolve on their own, although the time that takes can vary. I’m not sure if the beta blocker I take helps blunt the severity of these episodes when they do occur. But my tools are pretty simple: gatorade or other electrolytes source, cold compresses for sweating/temperature regulation, and lying down. I usually feel them coming too, so maybe that helps. Sometimes I will take 0.125mg of ativan, if the episode is particularly bad. Otherwise, I just wait for them to pass. I’ve never been too alarmed by them because–most importantly–they do resolve on their own. My mother had vasovagal syncope as well, and she dealt with it the same way.

      I’m sorry you have to wait on getting the vaccine. You’re not alone. A number of ME patients will be waiting, perhaps indefinitely. It would be interesting to know what percentage of the population overall cannot take the vaccine for medical reasons. That should factor in to the other public health measures!

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