It cannot be a straightforward answer. POTS can be completely disabling, a saboteur, just a mild inconvenience, or a thing no one even realises you have. In my five and a half years with it, I have watched myself slide between all categories like they are seasons with no order to them. I can see spring and winter in the same hour, and then I wont get anything else done until the disease is dealt with. And yet, it can’t always be dealt with! The tricks that worked last week won’t hit the sides and I’ll have to wait. I’ll have to be as sick as I am.

I guess in this text about how I write with POTS, let me be clear that sometimes there’s no writing at all. I have more good days than bad at the moment, so I’m going to outline what a good day looks like. This is for the beloved people of the salt, because god, a lot of preparation and maintenance goes into keeping that long list of symptoms at bay (or trying to, anyway).

A good day:

As soon as I wake up, I take 2.5mg of Midodrine. I currently take it 4 times a day, every few hours. For me, that’s roughly at 8, 11, 3 and 6. It has given me stronger days. It has also made my days much longer. Midodrine is a vasoconstrictor, so while I had success with beta blockers in the first few years, Midodrine means my heart rate does not get so high it needs bringing down in the first place. There is no specific medication designed for POTS, so doctors are having to pull from other shelves, but this is the first time I’ve taken something that has given me a bit of excess of energy to work with. It reminds me of the first time I ever tried an electric bike.

Four pills a day is hard to keep track of however. I tried phone alarms with varying Kpop marimba tones with no success. An Apple Watch is the only thing that has worked. There is a feature on the Health app to input medications with exact timings and so now, the watch buzzes on my wrist but it also sends a follow-up notification half an hour later if I haven’t ticked it off. Watches can be 30, 40 quid in CEX by the way. I just took them a load of old games and walked out with this.

Midodrine kicks in within half an hour, so then I sort breakfast. I have the subtype of POTS where I have less blood than a normal person and it really affects what I can and can’t eat. When a normal person eats, the blood goes to the stomach to aid digestion, but with a lower blood volume, I cannot risk too much blood rushing to the stomach too quickly because it takes it away from other organs. When this happens, I can fall asleep at the dinner table. I get flushed with heat, I cannot think straight, I feel miserable physically and emotionally. It feels like I lost the game.

Not to despair (though I did at the time, loudly), I have learnt to work around this. I snack regularly instead of eating lots at once, or split big meals like dinner in two and eat them a while apart. Most importantly, I now only eat food that is categorised as low or medium on the Glycemic Index. That means food that has a lower, slower impact on the body. In general, that means no white bread, white rice, white pasta, white potatoes. Instead, wholegrain and whole wheat variants; sweet potatoes and sourdough too. I currently have whole wheat porridge for breakfast, but I split that in two as well so I don’t conk out before the day has even begun.

We will get to the writing soon, I promise, but it’s also worth stating here at the beginning of the day that I do not have tea or coffee in the morning. I do not have any caffeine at all. I miss it! I miss it like an estranged friend. But caffeine has such a fast impact on me because of the lower blood volume that it then comes with a steep drop-off, and in the past, this led to a lot sudden crashes. I remember drinking matcha and falling asleep for an hour. And it’s hard because POTS really knocks energy, and caffeine feels so good, but in all I do now I am aiming for steady energy throughout the day. POTS makes me feel like I am not in control of my body, and so dropping things like caffeine have been better in the long run for my mental health.

I just drink water. I maybe get through 3-4 litres during the summer, and 2-3 in the winter. I used to chug it but now I sip constantly. Feels better.

Now we get to sit at the desk.

After I got sick, I did an assessment with the government’s Access to Work scheme who recommended and paid for an Adapt 660 Ergonomic Chair. Access to Work is there to help disabled people with adjustments they need to stay in work, and that includes those of us in self-employment. This chair is great. It is big enough that I can sit with my legs up, which is what you need to stop blood pooling (when deoxygenated blood enters the muscles, I get this thing called ischemic pain that is too all-consuming for trying to write anything at all). Plus, the chair sort of moves with me as I adjust my body constantly all day because of the tingling or numbness that happens between POTS and, in my case, Midodrine.

Of course, there are times when my energy is so low that the desk isn’t an option and I will take my laptop to bed or to the couch. When I had to do a year of heavy writing to get our book Poor Artists done, my POTS was totally out of control and I set up a futon next to the computer so I could alternate constantly between them. I couldn’t get through the day otherwise. But it’s like, I do not write by sitting down and typing every word perfectly anyway. No writer does. It is helpful to look away for a moment, close my eyes, and come back with more ideas.

I will say, I have actually barely been at my desk this summer because it’s in the hottest room in the house, and the quickest way to stymy a good POTS day is heat. I ended up taking my laptop to the park to sit under the shade of a tree. Get a breeze. But then, whenever it got above 25 degrees, I had to take a sick day because every symptom was flaring hard. We live in houses in England that have not been designed for the current climate we are facing. Nobody I know has air conditioning. I don’t really understand how I will live here in the years to come when 40 degree summers are predicted as normal by 2050. The climate, my health and my art are in locked in a free fall together, but I’ll write about that as well when the time comes.

I try to have an early lunch. I always make a lunch that I can add a lot of sea salt to. People with POTS need to eat a lot more salt as it helps the body retain water; more water and salt offset the nauseous, dizzying effects of a lower blood volume. But I make sure the salt I use is good quality, full of minerals, because the cheaper stuff just isn’t as effective, and salt can be a quick fix with POTS.

I can stop work to front load meals (which in general I think helps keep my energy steady) because I don’t really schedule meetings or do anything too labour intensive in the mornings anyway. People with POTS also tend to feel worse in the first half of the day, especially because it can mess with your sleep. I also find that there’s a slight cumulative effect to the Midodrine over the course of the day. So, if the writing leads me to a university, a talk at a bookshop, a meeting with a publisher or something, I make sure it all happens in the afternoons or the evenings. And not in the summer. Never in the summer. I do my own POTS version of compressed hours. I have to.

So then it’s back to work. I write and write, and because I’m not as sharp as I used to be — yeah, I think the phrase brain fog can be a bit too storybook? A bit patronising when these are cognitive difficulties caused by a lack of blood reaching the brain — I make use of the people around me to check over my texts. Make sure it’s making sense, that I haven’t repeated myself, that people aren’t going to trip up on a load of typos and so on. I do not like needing the help because I want to have written the thing on my own, but asking gets easier all the time and hopefully the writing does too.

The writing is not always consistent, not always productive. With POTS, I don’t have the same amount of energy every day. The last doctor I spoke to before the Long Covid clinic closed down explained it like this: my nervous system is faulty now, and while it is trying to keep up with all the processes to keep my body in homeostasis, if something falters (I get an infection, have a period, it’s heatwave number 5, or something acutely stressful or emotional is going on in my life) then my body can’t juggle all the regular work it needs to do, some processes get dropped, and then the symptoms worsen.

I cannot fire on all engines anymore, and yet because I have deadlines and urges and this very recent memory of what it was like to not have a disability, sometimes I do try to fire on all engines and end up sicker. POTS becomes the saboteur. Fatigue gets in the way of everything. My immune system gets knocked too (the sign of this for me is a cold I can’t shake in the middle of the year, a horrible tingling all down the arms, an overall feeling of weakness, nausea like a bad hangover, and sometimes a more obvious sign is just a straight up cold sore).

I mention this because it’s why, on top of the medicine and being careful with food and drink, I think I will always have to pace if I want to write.

Pacing. That great, nebulous word the doctors used to say to me as if it would solve everything without medical intervention. It’s this idea that if I only did little bits of activity throughout the day, and if I rested before I even got tired, then I would save up enough energy to be able to do more overall. I sound like I’m being sarcastic, but it’s more that, yes, this stuff works for some people, it’s just very difficult to know where your limits actually are in practice. It always felt like doctors were asking me to close my eyes, walk along a diving board, and stop an inch before the end. I would always fall off the edge.

But then I heard of this armband project, Visible, being developed by someone with chronic fatigue. It checks heart rate and heart rate variability, but more interestingly, it uses this data to convert your energy into what it calls Pace Points. That way, the app is able to give you an energy budget of say 10 Pace Points a day. I can tag my activity throughout the day and that’s how I was able to see that I used 5 points having a shower, 1 point for every hour I was sat at my desk, or 12 points going to Tesco. I started being able to plan my days better based on what I needed, and wanted, to do, with the aim of never maxing out on my Pace Points in consecutive days lest I explode my nervous system.

This, in conjunction with Midodrine, allowed me to slowly increase how much I could do day to day. I could finally attach actual figures to the feelings in my body. So reassuring. Eventually, after keeping below the 10 point maximum for a stint, I felt able to increase the Pace Points myself, and then again, over and over until my days became fuller.

Visible continues to be vital for my health. An occupational therapist once explained to me that we have four types of energy: physical, mental, social and emotional. Now I can see the effects of each of those through the armband. I can also share the data with the people around me so that we can plan things together that will keep my body safe. It can help me judge whether or not to accept a job, like an invitation to Newcastle to speak at the university. I have taken off the blind fold on the diving board.

It’s hard, isn’t it. I think given the fact that POTS symptoms are inherently tied to the nervous system’s functionality, I have really been trying to live a low stress life so that I don’t make things on harder on myself. I speak to a therapist now. I take evenings and weekends. I have good friends I see on the regular. Hobbies. Two cats. I am glad to live on a very quiet road.

I do not quite have the income to live a low stress life, though I know it’s something I need to move towards. And yeah, all this background work on pacing is how I am able to sit and write when before I was mostly in bed under a sleep mask, completely broken by the fatigue. It really felt futureless. But little by little, all of that stuff started to change – it’s just that the changes have now had to become part of my daily routine to keep me upright, and that’s the bit that’s hard.

And so I’ll write all afternoon but even on good days, things go wrong. There’s a flowchart for these diversions. If I feel dizzy, I’ll get another salty snack. If I’m nauseous, I’ll make a smoothie with some protein powder. The worst interruption for me is always an orthostatic headache — major pain only relieved by lying flat because it’s a sign there isn’t enough blood supply to the brain. My best fix for this is to down a can of coke as soon as it comes on. It goes against the no caffeine rule, goes against the glycemic rule, but caffeine narrows the blood vessels and stimulates processes in the body to increase blood flow so it is an incredibly effective cure. For what it’s worth, this has also worked for migraines with aura.

My workload at the moment consists of a review every other week, but mostly centres on a new book. A novel. I think that ‘self-employed writer’ must be one of the most accessible jobs for someone with this condition. There is no extra deadline raising my cortisol besides money running out, and if I need an extra hour in bed, or a flat day, I do not have to ask. The compromise here is that there is no wage — I make a living between Patreon and the occasional grant, writing commission, or lecture, which works because my rent in Liverpool is cheap. But I enjoy no benefits, sick pay, or the special private health insurance that more and more people in the UK seem to be opting for. It’s difficult knowing I would have more money if I had a waged job but I’d also probably be sicker. I think about that all the time.

I’m going to end this with the last part of my good day routine and talk about the CHOP protocol, as named by the Children’s Hospital of Philadelphia. I could not have imagined entertaining this before I started Midodrine. I actually think it would have upset me to learn about it when it was all I could do to wash my hair regularly, and I didn’t have the energy to manage even that. But I’m mentioning it because alongside Midodrine, and those food changes and the pacing, it is firm part of the structure that props me up now.

CHOP is an 8 month programme of cardio and strength training designed for kids who have lost their stamina because of POTS. It is graded exercise that starts with 3 minutes on a rowing machine — slowing adding more time, and moving through the rowing machine onto a bike, an elliptical, and a treadmill until the body is very carefully brought into an upright position, ie. the most demanding position for someone with POTS, and the reason for all our woes. Gravity.

I know that graded exercise has been prescribed to people with chronic fatigue by authority figures in the past to massive harm, making people much sicker than they already were. I avoided it because of this history, already feeling the effects of post-exertional malaise in all areas of my life. But last Spring, I pulled out of the book tour I was on because of fatigue. It was around the same time that I started Midodrine and had that sudden, albeit slight, excess of energy. I decided to try CHOP because, with the book tour no longer happening, I would not have to cancel any more work if I did in fact get sicker.

I am very relieved to say that it has only done me good. I have been regularly updating this blog post over on my personal website for the past year and a half if you want to hear about it in excruciating detail (yeah, it’s taken much longer than 8 months). But it’s like what the Visible app did for me, providing structure and real numbers to something that, in its mystery, would have had me always falling into the water. It has unexpectedly given me more stamina to write because it’s given me more stamina for everything — for conversations with friends, Spanish lessons. Everything across those four categories of energy. It even feels easier to sit in this chair.

The experience of doing CHOP has made me so happy. My boyfriend described it to his Mum by saying ‘she still has POTS, she’s just making herself stronger so it’s easier to deal with POTS’ or something like that, and it felt accurate. A process of strengthening the legs so that everything is easier. There’s only one negative for me really, and it is how much time I have to spend now in the gym every week to do the rehabilitation, and to maintain this higher level of energy. I imagine I will have to do it forever, but I also imagine I will have POTS forever so I can’t get around it.

Another part of the happiness though is that I find myself having so many ideas in the gym, on the way there, on the way back. On the elliptical itself. I am constantly getting the Notes App out because something else has come into my head. I realise the thing that character says doesn’t make sense anymore because I deleted the part from earlier. I decide to move that scene forward to keep the pace up, and have an idea for exactly how to write it in. These ideas shoot towards me, I don’t have to ask for them, and when I go back to my desk the next day, it’s just a case of parsing all the scribbles.

Then it’s just dinner, knitting, bed.

I imagine there will be times in the future when I am closer to disabled than I am today, but I have a better sense of what my body can tolerate now, and what I need to avoid. I’m feeling so worn out after summer as I always am, and I’m looking forward to winter. Looking forward to cramming the writing, cramming the gym, getting my work done and my body strong before summer wipes me out again.

I have half a book left to write and I am about to head to Chile for a month to research some stuff and get that second half done. I will follow these two posts up with a third about the experience of travelling to write, and writing residencies. I haven’t taken a long haul flight with POTS so who knows what state I’ll be in, but I’ll write about it either way. There isn’t enough information about this stuff out there and like – I want to write, I want to always be writing. But I can only do that when I also do the long, hard work of living with POTS.

🧂

These blog posts are funded with support from Arts Council England. I got a Project Grant this year to fund some work around the book I am working on. You’ll here more about it soon when I get back Chile : ) You can read more about project grants here.