https://globallymealliance.org/the-holidays-ways-to-participate-when-you-cant-be-there-in-person/
As the holidays near and COVID-19 numbers spike, people are scrambling to figure out plans. Should they travel? Can they see family? If not, will the holidays still be the holidays?
As a Lyme disease patient who has had to miss countless gatherings due to illness, I can tell you that while the holidays might not quite be the same this year, there are ways to safely participate in them that can still make them great.
Holidays are all about tradition. When I was acutely ill with Lyme disease, babesiosis, ehrlichiosis, and chronic Epstein-Barr virus, my whole life was turned upside down. I couldn’t work or socialize. I craved normalcy. Holiday traditions were a constant I had previously been able to count on. As winter closed in and I was still bedridden, I grew anxious. Would I not even have traditions anymore? Or, worse, would they just go on without me? I had FOMO—fear of missing out—before it became part of the common vernacular.
At first, I tried to join festivities as I once had. I sat at my family’s boisterous Thanksgiving table, trying to enjoy conversation and food. Instead, I experienced sensory overload. My body ached, longing to be back in bed. I wound up outside on the front porch, trying to get some fresh air.
Even as I regained some strength, I still couldn’t participate in festivities at full-tilt. I struggled to visit with multiple family members and friends over the holiday period. I often had to recover for days or even weeks. For several years, travel was out of the question.
ULTIMATELY, TO PRESERVE MY HEALTH, I LEARNED TO REFRAME MY THINKING ABOUT THE HOLIDAYS.
As I discussed in a previous post, “Making the Holidays Work For You,”, I learned to consider what really mattered to me. Was it about celebrating on a certain date, or was it about being with people I love? Was it about staying up until midnight on New Year’s Eve, or was it about doing something that made me feel hopeful about new possibilities? In that post, I outline some ideas that helped me put this new thinking into practice, such as having holiday celebrations at my own home, moving them to a time that worked well for me, and dropping an “all or nothing” attitude.
Reframing is an important tool to implement this year as we think about what’s most important during our holiday celebrations. However, some of my previous ideas simply may not work in a pandemic. Even if the most important thing is being with the people you love, it may be safest to celebrate separately this year.
But that doesn’t mean we can’t celebrate at all.
Rather, I think we need to ask ourselves, how can we be present with the people we love, even if it’s not in person? How can we show them we care, even if we can’t hand-deliver presents or give them a hug?
Technology has been a saving grace for this year, and I think it can come in especially during the holiday season. While Christmas over Zoom is not the same as Christmas in person, it’s still not a Christmas alone. Moreover, it’s a choice that will hopefully allow for safe in-person gatherings sooner; we have to keep the big picture in mind.
There are others ways to be present without physical presence. Because I was at my sickest in my twenties, I missed many friends’ weddings. I hated not being able to celebrate with them. But then I thought about what presents I could make them from bed. I started doing calligraphy for envelopes and place cards. I made scrapbooks for couples—collections of notes and photos from all of their loved ones—that they’re still perusing years later. I pre-recorded toasts.
Afterwards, friends would call up and say, “We really felt your presence at the wedding.” And while that wasn’t the same as being there in person, it still brought joy.
They would also say, “That celebration was just one day. You’ll be there for the rest of our lives.” And I have been. As I’ve gotten healthier, battling my way into remission twice and staying there for over a decade, I have traveled to visit friends; I’ve played with their kids; I’ve celebrated with them at more recent parties.
Though not unfounded, my original anxiety was for naught, because missing a year—or even a few—of traditions didn’t mean I’d miss them forever. Had I pushed myself to attend those celebrations when I really couldn’t, though, I might not ever have gotten well enough to enjoy all of the festivities that I now can.
The holidays may not be the same this year, but that doesn’t mean they won’t ever be normal again. Choices we make to protect our health now will allow us safer gatherings in the future. And in the meanwhile, we just might start some new traditions.
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Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.
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**Comment**
I want to encourage those of you who are either going through rough treatment, aren’t in treatment yet, or haven’t recovered your health. Treatment is paramount! Stay the course and don’t quit. While many Lyme/MSIDS patients have had to accept a ‘new normal’ for decades, it can be better. Often, it’s finding the right ingredients to fix your particular puzzle – but you can improve if not get your health back outright.
Chins up and forge ahead!
Rapid Response:
Re: Tick bite
Dear Editor
Razai et al, in their consultation on tick bite, missed an important message to learners (1).
The most common infectious agents transmitted by Ixodes species ticks in North America that have the potential for co-infection with B burgdorferi are Anaplasma phagocytophilum, Babesia species, deer tick (Powassan) virus, Borrelia miyamotoi, and the Ehrlichia muris–like agent (2).
A phagocytophilum is transmitted by the same Ixodes ticks as B burgdorferi in the United States and causes fever, chills, headache, myalgia, and fatigue arising 1 to 3 weeks following tick exposure. Most cases are mild and self-limited. However, severe manifestations may include respiratory failure, adult respiratory distress syndrome, peripheral neuropathy, rhabdomyolysis, acute renal failure, pancreatitis, and coagulopathies.
It has been found that in Wisconsin, approximately 3% of I scapularis ticks examined were co-infected with B burgdorferi and A phagocytophilum (3). A similar study in 11,000 ticks in public parks of New York State’s Hudson Valley Region found that co-infection rates of nymphs and adults were 0.5% and 6.3%, respectively (4).
The frequency of humans with Lyme disease simultaneously co-infected with A phagocytophilum from various studies ranges from 2% to 10% (5,6). Similirly, Babesiosis is transmitted through the bite of infected I scapularis and I pacificus ticks. Most patients are asymptomatic or have mild, self-limited disease but may be complicated by renal failure, acute respiratory distress, and shock.
In a study of patients with Lyme disease from southern New England, approximately 10% were co-infected with babesiosis (7).
Unlike Lyme disease and Anaplasmosis, doxycycline is not an effective treatment of babesiosis and requires atovaquone and azithromycin or combination of clindamycin with quinine, making it imperitive to consider this diagnosis in mind in patients with tick bite.
Of the 3 species of Ehrlichia in United States, only E muris–like (EML) agent is transmitted by I scapularis is the vector of this emerging pathogen(8).
Possible co-infections should be considered in any patients who are diagnosed with tick bite or Lyme disease, especially those who have unexplained leukopenia, thrombocytopenia, or anemia, or who fail to respond to treatment for Lyme’s disease.
References:
1- Razai MS, Doerholt K, Galiza E, Oakeshott P. Tick bite. BMJ 2020;370:m3029
2- Caulfield AJ, Pritt BS. Lyme disease Coinfections in the United States. Clin Lab Med 2015;35:827–846.
3- Lee, X, Coyle DR, Johnson DK, et al. Prevalence of Borrelia burgdorferi and Anaplasma phagocytophilum in Ixodes scapularis (Acari: Ixodidae) nymphs collected in managed red pine forests in Wisconsin. J Med Entomol 2014;51:694-701.
4- Prusinski MA, Kokas JE, Hukey KT, et al. Prevalence of Borrelia burgdorferi (Spoirochets: Spirochaetaceae), Anaplasma phagocytophilum (Rickettsiales: Anaplasmataceae), and Babesia microti (Piroplasmida: Babesiidae) in Ixodes scapularis (Acari: Ixodidae) collected from recreational lands in the Hudson Valley Region, New York State. J Med Entomol 2014;51:226-36.
5- Horowitz HW, Aguero-Rosenfeld ME, Holmgren D, et al. Lyme disease and human granulocytic anaplasmosis coinfection: impact of case definition on coinfection rates and illness severity. Clin Infect Dis 2013;56;93-9.
6- Steere AC, McHugh G, Suarez C, et al. Prospective study of coinfection in patients with erythema migrans. Clin Infect Dis 2003;36:1078-81.
7- Krause PJ, Telford SR, Spielman A, et al. Concurrent Lyme disease and babesiosis – evidence for increased severity and duration of illness. JAMA 1996;275:1657-60.
8- Pritt BS, McFadden JD, Stromdah E, et al. Emergence of a novel Ehrlichia sp. agent
pathogenic for humans in the Midwestern United States. 6th International Meeting
on Rickettsiae and Rickettsial Diseases. Heraklion (Greece), June 5–7, 2011.
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**Comment**
This important letter to the editor highlights many contentious issues Lyme/MSIDS patients have to muddle through. From where I sit, I disagree with the author’s statements that these infections are ‘mild and self-limited’, but I deal with sick people – not healthy. If there’s one thing I DO know, it’s that these infections have been downplayed for far too long, and it’s been a real problem. Patients haven’t been taken seriously for over 40 years!
The consideration of coinfections; unfortunately, is not common in mainstream medicine regarding Lyme/MSIDS. They still treat this as a one germ disease with doxycycline curing it, when nothing could be further from the truth: https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/