long covid awareness day

It’s day 2 in bed. I started feeling bad at the weekend but what does ‘bad’ even mean to me anymore? I’m bad most days, keeping badness to myself so people don’t look at me funny. But it’s day 2 in bed because I have Covid inception: I tested positive for Covid yesterday, which means I have Long Covid and Covid at the same time. Ha ha.

I’m okay. It’s been rocky. Last night, I woke up after 9 episodes of Gilmore Girls in one day finally lulled me into a true rest, but the waking up made me regret falling asleep; it felt as though the whole room was vibrating, and in a daze I thought there were a million washing machines around me about to end their wash cycles. I sat up a little. Couldn’t be a million washing machines. I touched the wall to check if the house was shaking but it wasn’t moving. I looked at the full glass of coca cola my boyfriend had sympathetically put on a tray on the bed for me and I didn’t have my glasses on so I got really close to the glass to check if the liquid was earthquake-shaking. It wasn’t. I lay there, room still vibrating, and then I put my hand directly up into the air. I couldn’t lean on air. But it was still there! Shake, shake, pulse, pulse. Weird, weird. I got upset and frantic. Buzz, buzz, pulse, pulse. What. The. Fuck. Was. Going. On. I text Michael, no answer. I looked more closely at my body and it didn’t make any sense because I wasn’t shaking even though I felt like I was? I googled ‘covid tremor’ and autofill pulled me to one side. ‘Long Covid tremors and internal vibrations.’ I read a blog post from somebody who said they had Long Covid for a while, and after a reinfection by covid, they were having these internal vibrations. I didn’t think I had the capacity for any new symptoms. I messaged my Long Covid WhatsApp chat to ask if I was losing the plot or if anyone else had felt this way, and 2 of my sick friends knew exactly what I was talking about. And maybe it’s like in Inception when the dreams start to break down, all those cracks, tremours; it’s a dysautonomic nervous system stretched beyond its limits but being asked to hold back the virus that first fucked it up. Day 2 in bed and I’m still thinking about that moment last night; I really hope it never happens again.

It just so happens to be International Long Covid Awareness day today. This is how I am celebrating. Season 2 of Gilmore Girls, choking on phlegm to the point of tears lmao, heart palpitations and headaches and tiredness. My head feels pretty awake but my body is not taking any persuading.

I never, ever took ‘international awareness days’ for anything seriously. They just reminded me charities or bad things existed, and I don’t think either should (have to). But I want to take this day seriously because I know first-hand that describing what Covid did to my body in giving me Postural Orthostatic Tachycardia Syndrome across reviews, podcasts, videos and Instagram posts, I have had messages from people who didn’t know about POTS before reading something I said, and were able to take that information to doctors or family members and get their own diagnosis. Please quickly read the symptoms of POTS incase you or someone you know gets sick, because whilst Long Covid can be many things, if it comes into your life, at least you’ll know what one of those things might be.

Basically, POTS is a fucking shit heart condition and blood disorder:

“When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that a sufficient amount of blood reaches the brain, the body activates several nervous system responses. One such response is releasing hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.

In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.”

that quote is via johns hopkins but I also recommend this nursing guide which also has a podcast version of the info!

POTS symptoms may include:

• Severe and/or long-lasting fatigue
• Lightheadedness with prolonged sitting or standing that can lead to fainting
• Brain fog: trouble focusing, remembering or paying attention
• orceful heartbeats or heart palpitations (a feeling of the heart pounding or skipping a beat)
• Nausea and vomiting
• Headaches
• Excessive sweating
• Shakiness
• Intolerance of exercise or a prolonged worsening of general symptoms after increased activity
• A pale face and purple discoloration of the hands and feet if the limbs are lower than the level of the heart

It’s kind of mad looking back over all of this. It was a disabled friend who first told me about POTS. The doctors never recognised it. When I took the POTS suggestion to the doctors, they didn’t know what it was. Then, when I asked for a test, they said no, it will take months to get a result. Not like I was busy doing anything else. I was unable to leave the house I was so ill. Through sheer desperation, and the important encouragement of the WhatsApp chat I’m in with a handful of other chronic illness pals, I eventually got an appointment with a Long Covid clinic. A year after getting sick, that new specialised doctor diagnosed me instantly. Test there and then, which only involves taking a heartrate at rest and then watching what happens when the test subjects stands up for a long time = if it goes up by a minimum of 30bpm, and if the rest of the symptoms match up, that’s POTS baby.

But I bring that up to say what might be the most important part of all my Long Covid thoughts: I would not have found help without the disabled community showing me the way and keeping me vaguely sane, and I want that for other people. International Awareness Days feels like the work of the community, and a way to bring people into it so they can access support and answers and solidarity. There was an article on them.us in 2022 about how ‘Long Covid is more common in bisexual and trans people’ and it’s like this: sometimes I get talking to a taxi driver about what happened to me, and they’ll stop. They’ll go oh, really? Wow, yeah, my breathing/stomach/sleep/whatever hasn’t been the same since I got Covid in 2021 but I haven’t actually been to the doctor yet, maybe I should go.' These middle aged men just keeping this shit to themselves. It’s horrible. How many people are without a community to show them what care looks like, or to encourage them to look after themselves, and that they are worth looking after. That’s why (LG)BT people are overrepresented in the stats. Pre-existing communities and networks; induction into the language of care; openness and energy to fight against medical establishments that don’t always feel like they are interested in or able to do their job right.

So, I get these messages. Me talking about POTS has helped someone’s Dad get a POTS diagnosis. One of our readers. Someone’s friend. Another one of our readers. And each time I have had one of those messages I have wept. It’s so depressing when you grow up assuming doctors are foolproof and then get a chronic illness and realise they’re not. So, I owe all my Long Covid love to the community and I will continue paying it forward. NOW GO BACK, RE-READ THE POTS INFO AND LOOK AFTER EACH OTHER PLEASE, WE ARE ALL WE’VE GOT and I have not read this back because i’m going to promptly lie back down do NOT tell me if there’s any typos I have literal medical brain issues