…thoughts and reflections on a year living with Epstein Bar Virus and the long-term effects of Mononucleosis.
A year ago, a few days before my birthday at the end of February 2020, I started to feel awful. My whole body was aching, I was very exhausted and couldn’t get rid of the feeling, that there is something happening in and with my body which wasn’t good at all.
A blood test a few days later revealed that I had mononucleosis, in German, Pfeiffersches Drüsenfieber which is caused by the Epstein Bar Virus.
Mononucleosis is also known as the kissing disease. Apparently, over 95% of people have that virus, yet, a lot of people never get mono or don’t notice it when they do. Well, in my case, I spent the whole last year noticing my new inhabitant very strongly.
2 days after the diagnosis I found myself sitting in an emergency room. After a check-up, my doctor sent me here because my gallbladder was inflamed. What followed were 2,5 days in isolation on intensive care. My blood work was so bad, that they put me in bed, hooked me up on a bunch of computers, and monitored me for 2 days. My case was extraordinarily heavy, and they seemed impressed by it.
I experienced a series of first ones back then.
I have never been hospitalized, I have never been that sick in my entire life, I have never had to eat hospital food.
After 2,5 days, the doctors sent me home and said, make sure you rest a lot, drink a lot, and be prepared that it will take a while until you feel full of energy, powerful and capable to do the things you want to do.
When I got home, my body was so weak, that even walking up a few stairs got me out of breath and dizzy. I spent a lot of days and weeks mostly chilling, sleeping, and napping on the couch. Doing sports has been completely out of thought and it still is.
When I started to go for walks 5 weeks later, I got aches on my left or right sides after 15min. of walking.
The state I was in back then, felt as if my body and system were completely put back to zero. This has been the lowest of the lowest I have ever felt in my entire life. The deep exhaustion and state of burn out I felt the year before, has officially reached its new low.
The fever waves still washed over me and vanished.
A wave of skin rashes washed over me and eventually vanished. The deep heavy tiredness came… and stayed.
In the beginning, tiredness felt like this person who just didn’t realize that the party is over and it’s time to go home. It just stayed. And there was no way to shuffle it outside the door and call it a taxi to send it home. This option wasn’t given to me.
Eventually a few months in, I felt that tiredness realized there are other things in life that are quite exciting too, besides hanging out with Eva, so I started to feel its absence sometimes. Yet, it always returned. After days of traveling, working or even short phases of high concentrations e.g. having a phone call, working on something on my laptop, basically using my brain, tiredness came back thick and clasped around me for up to three days after a „high energy event“.
It has made me experience tiredness in all its different shades.
- There is the tiredness that lets my eyes burn and feel sore.
- The tiredness which feels like 200 kg of soggy sand, and my body buried under it.
- The tiredness which feels like small elegant bags of lead, neatly placed over my eyes.
- The tiredness which feels foggy and gray and which wish washes out my brain functions.
- The tiredness which jumps at me the moment I decide to finally get up after a 9hr sleep. Which grabs my hand, hugs my whole body and calmly places its hand over my eyes so it’s very easy to shut them again and believe… I really need some sleep.
- The one which swallows everything else around me and installs the feeling of „I don’t care about literally nothing else than being able to close my eyes in the next minutes“.
- The tiredness which sits next to me while eating making me believe, I’m too tired to even finish your food. Thank god, this version hasn’t visited me in a while now.
- The one which lets me cancel business calls last minute because it shuts off all mental functions which are normally used to say smart things or at least be attentive and present.
- The one which lets me only pick books to read which are easy to digest because everything else would just be too overwhelming.
- There is one tiredness which is, I must say it out loud now, a serial killer. This one has a special quality to make sure no plan, no idea is followed through, no matter how exciting it would have been. I assume it’s only mission in life is to kill plans.
This one has been the most challenging for me to surrender to because it doesn’t just affect me but my relationship and life with my boyfriend. Even if it’s just simple things like planning to go for a walk, watch a movie, go to a Café, anything which smells like a plan has been killed by this particular version of tiredness. It’s incredibly unpredictable and thus, I and my boyfriend have given up planning our lives.
When I look back now, I’m glad I didn’t know back then, that even a year later, I’m still affected by mono or evermore, by EBV. I could have not imagined, what life looks like with tiredness as co-driver. It almost feels like, tiredness has become my second partner. I’m basically living in a relationship with my boyfriend and tiredness.
This last year has been tough, challenging, and nothing like I would have ever imagined I experience with 33.
In a world that optimizes itself for high performance, and high energy it’s been absolutely insane to be pushed into experiencing tiredness, fatigue, exhaustion, and watching myself moving very very slow. Having very very little drive and very very little capacity to act upon my hundred ideas and ambitions. In October last year, I said to my doctor, that this feels like a real-life immersion of how old people feel. You know when they say, „my mind is strong but my body is not any more “. I would argue, you have no idea what they actually talk about when you are young and energy is a given. As often, we only start to appreciate what we had in the absence of it.
There is more to be shared from my last year, but tiredness is knocking on my eyes telling me to stop here for now.