The CHOP Protocol Diary 🩻

I usually post work updates on this website but I wanted to share my experience of doing the CHOP Protocol somewhere, because whilst there are a few videos online, I struggled to find complete blogs that didn’t taper off after a few months. Also, my doctors don’t know what it is and maybe yours don’t either. I will return to this page each month to share an update for anyone interested.

My starting point is that: I got sick with Long Covid January 2021, housebound for half a year, diagnosed with POTS January 2022 and had some help from beta blockers until a Covid reinfection in spring 2023 fucked me up even more. 2023-2025 was spent in an unending arm wrestle with fatigue, every single POTS symptom on the list, and Vasovagal syndrome. I really tried to do stuff but my body really didn’t want me to. Then, in April 2025, my cardiologist started me on Midodrine and it felt so much easier to be in my body all of a sudden. I wanted to try building some stamina back up.

Obviously I don’t know if I will be able to, or if post-exertional malaise will put its foot down. But YouTube fatefully algorithmed a video about the CHOP Protocol to me, an 8-month rehabilitation programme for people with POTS developed by the Children’s Hospital of Philadelphia, and I decided I would try it. Things were so bad for me at the start of 2025 that I pulled out of lots of work things for the foreseeable (I am a writer who is supposed to be on a book tour), so now is the time to try it. Now is the best time if things go very, very wrong.

MONTH 1

Really hard mentally and then really good mentally. Really hard physically, and then more exciting than hard.

I found a low-key gym near my house and decided to use a rowing machine for my cardio days. I let the gym staff know what I was there for in case I fainted or something, and they were really welcoming and caring and supportive and vigilant. I printed the very long PDF the Chop Protocol is contained in, turned to the page for month 1 and wrote out a list of the machines I would use on strength training days on the right-hand side to try to get things straight in my head. It looked a little like this:

I have a Visible armband so I keep the app open and lean my phone on the rowing machine so I can see my heart rate. I have learnt that 1. I am desperate to go faster and harder but I shouldn’t 2. It’s easier for me to go slower if I don’t have headphones in and can listen to my breathing and 3. the Visible armband is the only way I can modulate myself because I can’t feel my heart accurately given the fact I’m on both beta blockers and midodrine. The protocol says that you should go at a pace that feels easy, but as someone who used to do a lot of sports before getting sick, that has been hard to follow, even in a body that has spent the best part of 4 years in bed.

So I’m on the rowing machine 3 days a week and doing strength training on 2 days. Those strength training days were so hard-going to start with, that the crashes I had after the gym led me to a panic attack. I was just dreading the next crashes to come. There were tears and regrets and I dunno — I had to just keep telling myself it was normal. Of course I would feel terrible? I kept telling myself that the protocol suggests making it to month 5 before deciding whether to stop or not. Plus it feels like health is my full time job at the moment, and I didn’t want to quit so soon.

And to be fair, the reason the column on the right of the image I posted is so scribbly is because over the first four weeks, I started on 10KG weights on most machines but was able to increase the weights on some to 25 and 30. I am already seeing the progress in one month, and god, that is gratifying. I keep a pen in my pocket when I go around the machines so I don’t lose track of these numbers. I can’t believe I ever went to a gym without pen and paper and a plan in the before times. The plan has made going the gym into a game. I love games! I want to win my health back.

I’m really happy to be here at the end of month one. There is a bit more colour in my cheeks or something. I have been keen not to just go to the gym for the sake of going to the gym more, but to make sure I’m going to the gym in order to be able to do other things. So, in the last week, I broke up my 5 CHOP days and went to a gig in the park near my house. I stood for the longest I’ve stood in 4 years. It made me really emotional and proud. I know most of this is midodrine but a lot of is also overcoming the week one panic attack. Some of it is me as well.

Random things to note:

—- I found a gym with no contract, so I can just pay month by month and opt out if things go wrong for me.

—- I can’t afford taxis to the gym so I have to walk 20 minutes there and 20 minutes back. I was really, really worried about this but here in week 4, it is much easier than it was in week 1.

—- I stretch before I do anything. It hurt a lot when I started and now it’s more relaxing than anything.

—- I repeated week 3 because my boyfriend said I seemed a lot more tired than usual, and I’m so glad I repeated it because it made week 4 a piece of piss!

—- I take Midodrine at 9AM and 4PM and I always get to the gym for half an hour after one of those times. It’s nice to have a sense of routine again after 4 years of being inside an endless living nightmare.

—- After week 2, I bought some gym clothes and wearing them makes me feel good.

—- I have B12 injections every month and I found that the day I went to the gym after my monthly injection, I was a bit hyperactive and I had to make a concerted effort to slow my heart rate down.

MONTH 2 TBC

:)