getting serious about my BLOOD

It was my 2 year sick anniversary yesterday. what did you get me for my sickday? I hope it was some beautiful Maldon salt. It is useful having my anniversary sit right at the beginning of the year. I got sick at the beginning of 2021 and I got a new diagnosis at the beginning of 2022. I like the neatness of that against the fraying mess of my body and mind; I like being able to point at a hard date out of crip time slippiness.

A recap for any new readers and also myself: I got covid and when it became long covid, doctors didn’t know what to do about it. A year later, a Long Covid Clinic-specific doctor was like, well, it’s obviously POTS. Postural Orthostatic Tachycardia Syndrome. He told me my nervous system was messed up, and that I needed beta blockers to slow my heart; to drink more water, eat more salt, and that was it really. I spent last year following that advice but ultimately still feeling the brunt of every symptom every single day, except I could feel bad out and about now because my heartrate was more normal.

If year 1 was survival mode, year 2 was a rash first aid kit. I need salt. I need water. That’s it. I sort of know why but sort of don’t. But I have my first aid kit and I’ll make it through the year that way – year 2 was just survival mode with more experience. I really want year 3 to be different. I know my body probably won’t change too much and I have accepted that. But I want to know what the fuck is happening to me. You would think I’d know already but honestly, I only know the headlines. I have simply been too stressed (and maybe too freaked out by internal nervous-system-level changes) to want to know the new biology I’m abiding by. So, I have started this year by catching up. I am going to write my findings here as a bit of revision. It’s for myself – I want to be better prepared when it comes to doctor’s appointments, and also for communicating the seriousness of my condition to strangers and non-strangers. It’s also here for anyone interested in science things, in disability, and in keeping track of the mass-disabling event that is covid.

this is what i have LEARNT slash decided

1. I think the POTS name is dumb. Because it has tachycardia in the name, people classify it as a heart condition whereby the heart goes way too fast when going from a resting to an upright position. While this is true, it’s not the heart acting mad of it’s own accord. It’s not the heart’s fault. It’s the whole nervous system going wrong;;;

2. when normal people stand up, approximately 500-800ml of blood sinks down their body. So, their heart increases slightly, blood vessels constrict, and muscles get to work making sure the blood is squeezed back up and all the way around the body because, you know, you’ve got important heart/head organs to keep oxygenated. In POTS tho, my nervous system does not respond correctly. When I stand up, my blood vessels don’t do shit. My nervous system knows something is up so it releases hormones (epinephrine and norepinephrine) to try to get the blood vessels to constrict but my blood vessels simply ignores them. The result of the hormones flooding my system = tachycardia (high heart rate) = fatigue, breathlessness, hotness, dizziness (picture me standing up trying to do the dishes and getting gradually more loopy as my blood sinks down into my legs and does not come back up)

3. I am on beta blockers to chill my heart out. I like the effect of beta blockers because it curbs the symptoms, although I still feel them. It has the added benefit of chilling me out emotionally. However, it is one pill for one small part of the problem and it is pissing me off that nothing is being done about my blood, when my blood seems to be a real issue.

4. People with POTS don’t have normal blood, which makes the above functions even worse. I now have a lower blood volume level. LESS BLOOD INSIDE ME. Less oxygen to my brain. That’s why I cannot concentrate anymore haha. This is why I have no memory anymore. HOW AM I WRITING A BOOK THIS YEAR. Honestly. If you are my editor and you’re reading this, don’t worry I’ll find a way. Anyway, bad plasma fucks up something called the RAAS system which is responsible for taking sodium and water out of the blood in order to increase blood volume;;;; hence the original doctor telling me to drink shit loads of water and add 2 teaspoons of salt on top of my daily intake in order to try to sort my body out. He did not give me the science. I just finally googled it 365 days later. POTS patients with high-sodium diets gain a higher plasma volume and less crazy heartrates.

5. Lower blood volume has massive consequences. My biggest issues have been chronic pain, worrying about my impared cognitive functions, and what happens to me when I eat food.

6. on pain: My bad blood sinks into my legs and pools there – venous pooling – and bad blood in the legs creates an ischemia-like state in the leg muscles (ischemia meaning deoxygenated blood flow). When this hits, I have to go on a big walk to get it to stop, and then usually when I stop walking the pain returns quite quickly lol. Blood circulation being messed up also means I am typing this with the world’s coldest fingers. I also think having less blood in the body means generally I am more sensitive to the touch but I don’t know what science to google to confirm that. Everything hurts more. Maybe blood is a cushion and I have a bad, flat cushion now.

7. on food: the doctor told me to eat small, frequent meals high in salt rather than 3 big meals and I got on with that but found that sometimes small meals would still make me feel terrible. I remember eating ramen in my office and falling asleep in my chair. I remember eating a dumpling on my own in a restaurant and getting boiling hot all over my body and feeling so spaced out in my head. The doctor never told me why but here’s the science: when I eat, my (shit) blood goes to my stomach to help trigger gastrointestinal peptides to get digestion on the go. It’s like, basically what little blood I have gets tied up in the digestion job and the rest of my body is worse off for it. This is why smaller meals have helped. Less demanding on the blood. But as I said, some small meals still do me in. So, in my research I found that I should be following a low GI diet (as in, glycemic index) which means sticking to proteins and fruits and if I want to eat carbs going for complex carbohydrates that take longer for the body to digest, so that the impact on my body/blood is less dramatic. This makes so much sense!!!! why did the doctor not tell me this. I am a week into doing this and I already feel more stable throughout the day. WHY DID NO ONE TELL MEEEEEEEEEE like dear doctors, you need to know this, and tell pots people this, because I was too freaked out for a year to find and read an entire scientific report on the matter of my own accordddddddd and i have suffered because of it

8. on hot weather: ‘Heat causes blood vessels to widen, thereby increasing heart rate and other PoTS symptoms.’ simple. terrible. dreading summer so much.

I think I’ll leave it there for now. I am ready to fight the NHS. I understand POTS as a blood disorder now, not a heart condition. Everybody boo my blood. Let’s all boo. BOOOOOOO

here’s all the links where the people say it properly:

https://straightanursingstudent.com/pots/

https://pubmed.ncbi.nlm.nih.gov/17630594/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8126535/

https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.121.17852

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8629901/

https://www.sciencedirect.com/science/article/pii/S2212267222003422