Around mid 2020, I got Covid very severely. The outcome of this is a cautionary tale for why you should get your Covid vaccine. Honestly, I am doing the best I can with the illness I now have, but it is really debilitating. Don’t shit on people doing their part to stop this spreading further.
Before Covid, my health was mostly okay. I had some unexplained health complications (for some reason, I will get extreme pain in my kidneys at some random times, but it was like every half a year, a far cry from my issues now) and some intermitent asthma. But I was extremely active. When I moved to Newcastle, I was frequently walking tons of miles per day. Sure my mental health wasn’t amazing, but I was by all accounts fairly physically healthy. All of that is different now.
You have the power to likely reduce the risk of getting POTS, I did not at the time. Please don’t risk it. It is not worth the percieved W in a Twitter war.
Getting Covid
When I got Covid, I was in university student dorms (this likely deserves a blog post of its own due to the sheer abuse of power by Northumbria University towards their students at this time). One of our housemates ignored the fact that there was already chronic health issues within the flat and decided to go to a party.
After this happened, the flat all tested positive for Covid. Interestingly, the people who it should have affected most thankfully got off fairly scot free, but at this point I started coughing to a level where I could be heard in the hallway and passing out when I tried to sleep on certain sides and waking up in a delierious state or feeling like I needed to sleep suddenly. The first call to the NHS was made at this point, and I thought it would just go away relatively quickly. It is 2024, my health has not recovered. The other symptoms quickly followed as I was able to do more.
Around this time, I was impacted in other ways. Doing anything was way more physically tiring than it was before. Working regular intervals would cause this, immediately making working a 9-5 significantly more complex and a fight with my own body.
What is POTS
I will spare you the complicated details, but POTS basically raises your heartrate significantly more when your body is in certain positions because it affects how blood flows through your body. A few examples of the impact of this are:
- Sometimes I will wake up and then immediately pass out by attempting to get up. This, along with my ADHD, makes it significantly more difficult for me to be able to get up and get work done.
- When I go for a walk or something like that, my body has to do a LOT more work than the average body. Even heavy thinking or stress can do this. This means that I am more likely to pass out.
- Sometimes my heart rate just hits crazy levels and I need to seek medical attention.
Make no mistake: POTS is a debilitating condition and having it heavily impacts your everyday life.
My journey figuring out I had POTS
Of course, I never initially knew I had POTS. Figuring it out was a uphill climb.
When I was initially randomly passing out, I went to A&E to seek medical assistance a few times. The solutions varied from “drink less Coke” (I did not have ADHD medication at this time, so caffiene was a bit of a impromptu bodge, I did try cutting back though) to “yeah not sure sorry”. Nobody seemed to care. I did have POTS suggested to me once, but no doctor was willing to hear it. I ended up dropping out of university due to the mental health consequences of it all.
So cut a long story short, here is about 2 years of:
- Takes a blood test
- “oh, this looks fine”
- “yeah dunno sorry”
It took moving to Brighton (even though I don’t plan to stay in the UK super long, Brighton is the last deck of the titanic in my opinion) before I found a doctor that would take me seriously. After documenting what is wrong using an iOS/watchOS application named Tachymon (I am SERIOUSLY thankful to the engineer who wrote this and made it so cheap to consume, thank you, the app you wrote to figure out POTS in one person has helped many others including me).
The tests the doctor ran alongside my medical records and the results from this application confirmed my diagnosis. The tests the doctor ran were so basic along with everything that I almost felt upset that it took so long for the NHS to figure it out. In the time they didn’t figure it out, I constantly thought it was me that was the problem. This took a toll on my mental health. Knowing it is a chronic illness with no cure right now has actually helped me feel less bad about this fact. Another fun fact is around a similar time my ADHD was diagnosed, and the medications from it have been shown in studies to help with POTS.
Naturally, due to getting the POTS diagnosis and the measurements took for this, I ended up losing my ADHD medication for a while. This made everything even worse. I am told that I should be able to collect my ADHD medication now though and am going to try when the pharmacy opens (it is 3am and we don’t have the American luxury of pharmacies with wild opening hours), so that’s a win I guess?
Dealing with my diagnosis now
To cope with POTS, I have a few coping strategies:
- Just work when my body can. All my work now is flexible hours, so I try to work around of that body. Whether that is 2am Sunday or 4pm Monday, I push to Git around when my body will let me. This is not too dissimilar to how I treated unmedicated ADHD, but for different reasons.
- Just sleep when I can. The curse of ADHD here is that sometimes I just don’t feel tired either, so I try to work through this.
- Work when I feel shitty but not too shitty. This was a hard line for me to find, but sometimes I need to accept my body just won’t let me work today.
Of course I hope for a cure soon though. This illness sucks. Get your vaccine. I am writing this at 3am unable to sleep after POTS passed me out several times today.