Head Above Water

On the repercussions of energy-draining emergencies and isolation

May 25, 2024

The photo shows the bed perspective of the author when she is lying in bed and looking up. You can see a few green plants and books on the bookshelf. — My bed perspective

Dearest reader,

thank you for taking the time to read my newsletter!

I feel drained as I sit down to write. The past few weeks, like the months and years before that, have been, well, a lot.

Despite my hope for a short-ish recovery period after the basement of my building suddently found itself under water, here I am, two weeks later, still not yet fully “recovered”. There was the odd day last week when I tried to convince myself that I had, but each day showed me that I was mistaken. While I’m tired of being so tired, there is nothing I can do except continue with my established routines and keep my fingers crossed. Patience. Something I need to cultivate more of.

Full Mind

My mind is full, yet when I consider what to write, it’s all fog. Which is a reminder that I need to prepare for a doctor’s appointment. These days, it is unwise to go to one unprepared. I will note how my symptoms have been progressing/changing/staying the same; how the meds are working and how many I take each day and time of day; how I’ve been sleeping (poorly, restless, sweaty). Without first putting pen to paper I know - because it has happened - that I will forget at least half, if not more, of what I want to mention, discuss, and ask.

My mind is digesting all the information I absorb from the world around me. Whether it’s by reading up on the “real-life Lady Whistledown” that lived and wrote during the 18th century, now that the first part of season 3 of Bridgerton is out. Or looking up and discovering the British cellist Beatrix Harrison, who lived and played at the beginning of the 20th century, after watching the movie The Dig (2021). And listening attentively to a recording of her, playing in her garden, during which a nightingale accompanied her.

It’s Getting Hot in Here

At the same time, I continue planning for summer and rising temperatures. Some recent nights have been warmer than I can handle (as I have not completely switched to full summer setting yet - aka the thinnest possible blanket and the pyjamas that bring me the most comfort), leaving me soaked each night, waking up frequently, and getting up without enough rest. I used to love summer; now I dread it. There are many things to consider as the days and nights get warmer: when to air out my apartment; when to open or close the blinds; when to open the umbrella on my balcony to create more shade; when to add ice cubes to by drinks; when to go for a walk; what to wear (to ensure as few changes throughout the day as possible); what to drink to hit my daily quota; what to eat to ensure my body can replenish minerals lost through sweating and get enough energy in the season of me eating less, because the heat intolerance causes frequent nausea…

ME/CFS Awareness Day

May 12 was ME/CFS Awareness Day. This year, it was a Sunday, the day of the week when I keep my social media apps closed; however, to help raise awareness, I posted a quick picture of me in bed, wearing something blue, on the day, but did not check out what else was going on online.

The photo shows the author Yvonne, a white woman with short brown hair lying on her bed. She is wearing a blue knitted top to help raise awareness for ME/CFS. — I went blue for ME/CFS on May 12.

The next day, I took my time to go through my timelines and feeds, liked and commented on other people’s posts and messages. It was impressive to see so the personal stories, numbers, and solidarity, which made me feel less alone. Yet at the same time, it was heartbreaking, if not heartwrenching. To learn of how others were treated by the medical establishment, by the world around them, their loved ones. There will be future posts about medical burnout, medical gaslighting, the shameful treatment of people with ME or other similarly horrific chronic illnesses.

In the meantime, Madelleine Müller, who writes “The Bed Perspective” just published a great and important article on chronic illness burnout. Check it out!

Isolation

Today, however, I need to write about isolation and loneliness. If there was one theme that occurred almost without fail in every story about ME/CFS it is that of isolation. When you are bed- or house-bound, the size of one’s (social) life decreases exponentially. I can count on one hand the number of celebrations and special events I have been able to participate in during the last six months, whereas I have lost count on the number of occassions I had to cancel or declined from the beginning.

We (I shall use we here to summarize some experiences of fellow folks with chronic illnesses) might rest and pace in excited anticipation of an event only to find ourselves too poor to be able to go after all. We see our friends and family share about the events they attend, the celebrations they can be a part of, the life they get to experience while we remain observers. We follow other people’s lives on social media and see how they are thriving, changing careers, moving cities, etc. while we count how many days we can go in between showers. We are happy for the people in our lives but also envious. We cry and yell at the universe about how unfair it is that spending time with people is exhausting; it is part of the daily math of how much energy, how many spoons we have, and, well, the numbers don’t lie. We know that being social is important for our mental health, but we also know that it can be detrimental to our symptoms and illness. How do you decide?

We are constantly reminded of our profound isolation of society and “normal life”. The Northern lights we did not see because our health does not allow us to leave the house or stay up that late. The movies we did not see on the big screen; the music we did not listen to, because at times, music hurts us. The hugs and kisses we did not get, the joy we did not experience. The little moments we miss that cannot be planned: a sudden rainbow; everyone singing “Happy Birthday” for a loved one; spontaneous dance parties; staying up all night talking.

For me, and for so many others, it often feels as though the Covid-19 lockdowns never ended.