Changing Seasons and a Family Ambush
Checking in around the Winter Solstice in the Northern Hemisphere
Hi! Thank you for subscribing to Write What Remains, a newsletter that provides an insight into life with Long Covid and chronic illness. If you enjoy this post and/or know other people who would benefit from its content, please consider sharing it.
I’m so grateful for everyone who spends some of their precious time & energy reading what I share. If you believe this work is important, please consider becoming a paid subscriber OR gifting someone a subscription! 💌🎁 In my third year of Long COVID, your support would mean a lot. How? Just check at the end of this post.
Dearest reader,
thank you for being here! The other day I told a small group of people about this site, and when I shared the link with them, it hit me: The last text I wrote was for Halloween! 😱
Sorry about that! Time moves differently when you live with chronic illness; plus, I started taking three classes this fall, and this new cognitive task has taken over my cognitive capacities. The classes have been fun and interesting - and I am sure I will soon share more about them - but there has been no room left for this little corner of the internet and your inbox.
A Winter Solstice
After suffering through this year’s hot summer, I welcomed the colder temperatures of fall and winter. I have always been a fan of distinct seasons, and this year, people around me noticed my different energy levels as the days started to get shorter.
Now, we have arrived at yet another big change: winter solstice in the northern hemisphere. With it, the days are going to incrementally get longer again, bringing more light back into our lives.
In the past, the darker months were challenging for me because they often led to a more pronounced depression. Over the years, I anticipated this seasonal change and started preventative measures in the fall, such as regular walks, a daylight lamp in the morning, plans to look forward to, regular check-ins with my therapist.
This year, I followed my “depression-prevention” routine and somehow, I am doing okay. My Long-Covid symptoms have been stable; I better understand my personal energy envelope; and taking classes and interacting with others has had its own positive impact.
A Family Ambush
Then, some of my long-laid plans were spoiled. By some members of my family.
Like most years, I knew I would spend the holidays at my parents’ in the countryside. The train trip is exhausting because of Long Covid and I wanted to bring my cats, Luna and Jo, with me, so staying for a couple of weeks makes the most sense.
Over the last few weeks, for at least a month, I have been planning and organizing this trip to make it is minimally stressful on my cats and myself. During Luna’s yearly check-up at the vet, I discussed the best options. With my mom, I considered transportation and settled on upgrading to first-class train tickets to go home five days before Christmas.
My mom agreed to accompany us during the trip, because with two cat carriers and my own luggage, I knew I needed help. Arriving a few days before the actual festivities would also give me some quiet days to rest and recover from the trip and to rest preemptively to avoid overexertion during the holidays.
Well, the best-laid plans…
Without being consulted first, my family told me on the day of the trip that my niece and nephew would come with us. (I love them both to pieces and was looking forward to spending time with them. Neither they, nor my mom, are not the ones I blame and am mad at here!)
These external and inconsiderate decisions made a mess of everything I had been organizing so carefully for months: All of a sudden, we were leaving earlier, right during lunch time. My plan was to leave slightly later, which would have allowed me to have lunch and take a short nap, thus adhering as much as possible to my regular - and necessary - routine.
Leaving during my eating time meant that I had to make a difficult decision: Take off my mask on the train to eat at least a sandwich and expose myself to a possible infection. Or not eat on the train and risk low blood sugar, a nasty headache, and all the other symptoms that come from not eating enough or frequently enough. I chose the former.
One early lesson of living with a set of chronic conditions is that most things are out of our control. However, the flipside of that insight is recognizing all the areas where I do have agency.
In this instance, however, my agency was ripped from me, which disrupted my painstaking system and could lead to (lasting) adverse health effects.
The last few days before the celebrations are not going to be as serene as hoped, either. And on top of the extra amount of stress this thoughtlessness caused me, I am also mad as hell, and strong emotions overwhelm my system.
At the moment, I am experiencing a cardinal symptom of ME/CFS: PEM (post-exertional malaise). My fatigue is more pronounced, as is my brain fog. Most of my other symptoms are stronger again and it will take days or weeks to (hopefully) return to my pre-trip baseline. The extra (unplanned) challenges and exhaustion make this PEM worse, which means that I need to include as much radical rest (= little to no stimulation while lying down) as possible.
Happy Holidays, indeed. 🎄🌟
If you understand what I’m talking about: I’m sorry and it sucks and I see you.
If you know someone that might be going through something like this, and chances are that you do: Please show kindness and grace and compassion. Don’t tell us to “think positive”, that “everything happens for a reason”, or any other such bullshit. Listen to us, believe us, and see us. And please don’t forget us OR be inconsiderate of our very real limitations!
Glimmers
Glimmer: a micro moment of joy, awe, hope, safety; opposite of trigger ✨✨✨
Learning new things in class 🤓
My mom’s Christmas cookies 😋🍪
Two weeks in the countryside 🛤️🏡 (I’m a country bumpkin at heart 💙)
A question that remains…
How are you dealing with family during this holiday season? 🤔🤔🤔
