Today is #LongCovidAwarenessDay.

Tomorrow marks 5 years since I got sick. As a patient, you often need to stay focused in the present, adapting your days and life accordingly, but it does happen that you reflect on how different life looks now compared to then. On days like this, it feels like a good opportunity to share a bit and truly show how this virus affects people, especially to raise awareness about long COVID/post-COVID. So here are some info in bullet points:

• As a freelance musician, it was uncommon for me to be home for more than some weeks at a time – Now it can take weeks before I even get outside my door.

• I used to travel around the world with my double bass – Now it’s myself that I roll around (wheelchair indoors, electric wheelchair outdoors).

• Throughout my life, I have worked in care and taking care of people – Now I am the one who needs home-care and assistance.

• I used to be quite an extreme omnivore (as some can attest to🙃) – Now I can count the foods/ingredients I can tolerate on both hands.

• Before I got sick, I was classified as overweight according to BMI – Now I struggle to stay just above the underweight line.

• Mobility aids, vasodilator medication, home care, and senior discounts were probably not on my "bucket list" to check off before I turned 40 – But I managed to check them all off.

• I did have some medications before I got COVID, but now I have 15(!) different medications to help me stay relatively stable from symptoms related to my heart, lungs/airways, digestive issues, to counteract allergic reactions, and to assist with mental and physical stamina.

• I rarely needed to rest to get through the days – Now entire days are dedicated to resting and maintaining a routine to manage some simple tasks, things that were previously taken for granted and not even considered strenuous.

• It didn’t go many days without me playing the double bass – After trying a bit in the first half of the year I got sick, I can now count on one hand how many times I’ve even plucked a few notes on it since then.

• Playing concerts and attending colleagues' concerts was a big part of my life, both professionally and socially – The number of concerts I’ve attended in the last 5 years can also be counted on one hand.

• I used to experiment a bit with sinewaves and psychoacoustics – Now it’s the tinnitus in my head that provides the sinewaves.

• I used to find it relatively hard to motivate myself to exercise regularly – Now I would do anything just for my body to respond normally to even the smallest, simplest movement exercises (For those who don’t know, I tried various kinds of "training" in the first 3 years, but despite adjustments and very light exercises while lying down, I eventually had to realize that it just makes me worse).

"You have to be healthy to be able to endure being sick," was a phrase I had heard before I got sick, but I didn’t really understand its meaning until I experienced how you have to fight for everything (And I had no direct "illusions" about how healthcare works, due to experience both professionally and through family).

I want to reiterate that this text is mainly to show how different the worlds then and now are. I am "used" to how my situation looks and live accordingly. I often describe my situation as "fairly stable at a very low level."

I also want to add that I am truly not alone. Fresh statistics from the swedish polling institute SIFO today show that over 280,000 people are estimated to have post-COVID in Sweden. Since it is an umbrella diagnosis, the disease picture varies for many. But the idea that it’s just a bit of "lingering symptoms" is really not true, and I know (unfortunately) several people who have significantly worsened recently, 5 years into their illness, and who have had to be hospitalized lately.

We need to take this more seriously!

Do you feel like you want to do something for us with Post-COVID?
If you live in Sweden, Please consider donating to the Swedish COVID Association (Svenska Covidföreningen), which does an absolutely ENORMOUS job.

Swish: 123 217 81 35

If you live somewhere else, find relevant patient organisations and advocacys in your are to connect with and support.

Do you feel you can do more? Email a political decision-maker, try to influence in various ways. Spread information and knowledge! Etc., etc.

Thank you to those who took the time to read this post! 🙏♥️

#postcovid
#longcovidawarerness
#longcovid
#disabillity
#longtermsickness
@longcovid group