It’s back. It’s freakin’ back. There I was, happily re-acquainting myself with normal life after 54 days of covid-19. The energy I had was amazing, the clearness in my head unbelievably great. I wrote about the whole thing again, tips and insights I’ve gained and all, and That Was It.
Or so I thought.
Here I am, down there somewhere in a hole again. Me and my Corona Brain. I like to label things with words (as you might have noticed) so Corona Brain it is. When I have Corona Brain, it feels like a part of my brain just doesn’t want to wake up. I am here, but not completely. Somehow thoughts easily get tangled up inside my head into a big soup. My family notices a clear difference in me: I’m acting slower (and weirder) in everything compared to the real me. Combined with fatigue and increased lung pain, I have now learned that the only thing to do is surrender. Again. Waking up with Corona Brain feels like a lost day. I will go to sleep tonight and can only hope to wake up tomorrow with a clear head and more energy.
When I read the news and my social media feeds, I mostly read two things:
1. Statistics of people who have died and stories from people in respirators in hospitals
2. Information about how covid-19 “for most people is like a mild flu with little or no symptoms”
I feel such a need to understand: is it just me or is there something missing in the narrative around Corona and its long-lasting symptoms? I have several people in my circles who are reporting terrible conditions. They are not hospitalized, instead they are sitting at home while going through all of it. For example: nine weeks (and counting!) of constant fever. Weeks of sleeping 20 out of 24 hours per day. Wave upon wave of lung troubles. Etc. etc. Why am I not reading about this more? I notice how much it means to me to hear about other people and their experience with having covid-19. It makes me feel less alone somehow, and that we’re all in it together.
As I wrote before: I can’t imagine anyone going through this for weeks (months) on end and not being (deeply) affected by it. Yesterday I experienced such a desperation:
What if this will last for the rest of my life? What if I will never be completely rid of it?
I cried on and off for two hours, it just had to come out.
Anyone reading this recognizing this desperation? Because the thing is that nobody knows. There are still so many question marks around this virus. We need lots, and lots, of time for the scientists and health experts of the world to solve this Coronavirus-puzzle. And in the meantime, we cannot do anything other than wait it out. There is no cure.
I have understood that, medically, I am virus-free but not symptom-free. That means that I’m not contagious anymore, but that my body still shows symptoms and that these can come in waves. No one today understands why this is (and how long this will last) but it can apparently have something to do with my immune system reacting in a particular way. I am no health expert, so this is as far as my understanding goes.
It is what it is.
I feel a lot of hesitation to publish this because the truth is that I feel ashamed. I feel ashamed about writing that I’m healthy to then return and write that my symptoms are back again. I also feel fear of being judged. I am afraid people will judge me for writing again about my problems with this virus. I’ve already written so much about it.
Just to be clear: I do not write this in order for people to wish me well. I do not write this in order for people to feel sorry for me. I only write this, once again, because my writing might help someone else out there. If it does, then that means the world to me. That’s all.
To all of you out there with Corona Brain and all other symptoms: hang in there! And remember:
With love ♥
PS – an update: I notice a lot of people reading this text as well as my previous posts about having covid-19 (thank you!). If it resonates with you, I’m very grateful if you want to share it in your circles too, so it can reach more people who are struggling right now. Thank you!
Photo: Pawel Czerwinski – unsplash.com
This writing is part of what I call my Corona Chronicles. On this page you can find an overview of my stories, including tips and insights I have gained throughout the weeks since I got covid-19.
Dear Nanda, this is heartbreaking to hear.
I hope so much that this will be over asap for you.
As for now I can only send you lots of love and heartfelt warmth and support!
Please dont feel ashamed, its a really hard thing that is happening to you.
I also think that it is really important that you share this. It needs to be known,
there is still so much unknown about this whole thing and people act
very irresponsibly out of not knowing, ignorance or denial.
If I can help you in any way, please let me know.
Again, lots of love and strength for you!
Hafiz, thank you again for your lovely message. Lots of love back to you ♥ ♥ ♥
lieverd, wat geweldig dat jij dit publiceert om anderen te helpen en te delen met o.a. ons, over jouw ellendige situatie. Schuldig voelen kost zoveel energie; jij bent absoluut niet schuldig en hoeft je nergens voor te schamen.
Bergen liefde en warme intenties plus ons gebed sturen we naar jullie toe. Om(w)arming van ons, Harry/Thea
♥ ♥ ♥ dankjulliewel!
Dear Nanda, Thank You very much for sharing!
It is so heartwarming to get the gift of hearing you sharing your experiences that gives an outer “proof” of those symptoms that have such strong impact on both body and psyche. I dont know if I have had covid-19, but since some weeks I experience similar symptoms, and they come and go, come and go. I really wish you the best and a lot of good recovery and health.
Thank you for creating a space that gives the feeling of not being the only one with these conditions.
Thank you Samarpan! I hope you will feel better soon. Love from Stockholm ♥
Dear Nanda, we are so many experiencing what you do. I have had symptoms coming and going for 9 weeks and last week I actually felt so bad that I went to the hospital and they tested me with the covid19 test! Incredible because normally only the staff are allowed to be tested in Sweden. I was negative and all the test results were good. I have been extremely dizzy and had problems breathing. My friend had probably covid19 and she was then well for about 3 weeks. Then several weeks later she got weird symptoms again but it’s better now. This virus is the strangest thing ever! I can just hope I’m about to get well now since test came out negative. But who knows… take care! Anna, Pauline’s friend
Hi Anna, thank you for your message! Sorry to hear you also experienced a set-back. I hope you will feel 100% healthy soon! Take care you too ♥
Thank you so much for sharing! I would say mission accomplished, I cannot tell you how much it means to know that what I’m going through is real and that (unfortunately) others are battling the same fight.
I wish for you that even though the rollercoaster continues you will notice that the bad days are getting less and less and that the glimpses of your old self returning will get more and more.
No judgement for writing about feeling worse again, because that is the reality of the long term symptoms it keeps coming and going. I’m in week 10 now and trying to focus on what I can do desperately hoping to be my old self in the near future.
Hang in there and thank you so very much for sharing!!
Thank you for your message Riane, it means a lot to me that you appreciate my writing. Hang in there, you too! With love from Stockholm ♥
I feel you completely.
Thank you for your message, I hope you will feel better soon!
Corona Brain describes my experience as well. I’ve been through 2+ months of chronic mental fatigue. 30-60 minutes of attempted thought (or writing, which I do for a living) has been enough to make me overwhelmingly tired. I’ve been taking 2-3 long naps a day on top of nighttime sleep. During this period, by the way, caffeine ceased to stimulate me. Here’s my working theory: my immune system went into over-drive to defeat the virus. It mostly succeeded, but with a debilitating effect on my brainpower. Thank God (or whomever or whatever), my condition has taken a marked turn for the better, finally. Today is my fifth straight day of normal, high energy — no brain fog, no drowsiness. My fingers are crossed.
Hi Jim, thank you for leaving a comment! I’m happy to hear you have turned a corner. My Corona Brain has not returned since I had it, I’m also very grateful for that. Now it’s other symptoms for me and I have also been thinking in the same way as you around that. Something with my immune system is “off” and it takes all strength from everything in my body to get back into balance. Thanks again for reaching out!
Please don’t be ashamed or silence your voice. It gives long haulers comfort to read other similar
stories and to know that they are not alone in this. I am a mom of a daughter who tested positive six months ago today and she has the same story as you. I pray and cry for all of you who are suffering with these debilitating side effects everyday. I have hope you will all be well again and this will not be your new normal.
Thank you Susan, for your comment! I hope your daughter will recover soon; I keep on believing that this will pass. With love from Stockholm ♥
Glad to find this……a few weeks short of a year right now, and so not feeling well. My brain is nowhere close to its pre covid state. That is at the top of a long list of symptoms.
Dear Elizabeth, thank you for your comment! I’m sorry to hear you’re also still struggling after almost a whole year. I hope you have a solid support system around you and can get a lot of rest!
It’s amazing to me to read that you’re glad to have found my writing, curious to know where you found it? 🙂 I don’t advertise this site at all, but it seems to keep on being shared – that really touches me.
Sending you a hug ♥️