My POTS Recovery

A POTS Recovery Story

My POTS Recovery

When I was 22 I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). This came at the end of an excruciatingly long and exhausting journey of chronic illness, which started at 19. It took 3 months of consistent, daily short bursts of recumbent exercise to take me from being pushed in a wheelchair to going for a 40 minute walk. This is exactly how I did it.

Part One

My Story

When I became ill at 19, my whole world collapsed. I went from being in university, excited for my future and new-found freedom to being back with my parents and housebound. This was nothing short of devastating. I spent the best part of three years on the sofa watching Harry Potter, ill to an extent that was difficult to comprehend. The world carried on spinning yet my life was at a standstill. Being ill to that extent is an incredibly isolating experience. It isn't something that many people can relate to and that can make it feel very lonely.

I often felt like I was a ghost, removed from life yet watching everyone around me keep living. Every day felt like a prison sentence in a body that couldn't cope. I massively suffered with fatigue, had complicated gastroenterological problems and extremely painful periods. For a long time I thought that this was my future. But I was wrong. Today, I am getting ready to return to university, symptom free, going on walks every day and finally living again.

My diagnosis of POTS gave me hope. When I got an explanation of what was happening to me, I finally felt like I could see light at the end of the tunnel. I found a cardiologist who recognised POTS and that is where my journey began.

I was in an incredibly fortunate position of being able to dedicate myself to my recovery like a full time job. I was also fortunate enough to be in a position where my living room could be transformed into a rehabilitation centre, where I had a rowing machine, recumbent bike, resistance bands and yoga mat. I recognise my privilege in being able to do this, and I do not want to discourage anyone unable to replicate my set up. It was incredibly helpful yet not essential for my recovery.

Before my first appointment I had been attempting very short walks (around 20m) every few days. These 'walks' left me feeling depleted and flared up my symptoms. I was advised to stop trying to go on walks and to focus all of my attention on recumbent exercise. This advice was very important to begin my recovery.

It is extremely daunting to start exercising when you feel so vulnerable. Before starting, I was terrified of making myself worse. This is something that I shared with my cardiologist, and felt massively reassured by his advice that this would not happen. During this recovery programme I did feel stiff and sore. Most days, particularly in the beginning, I would suffer from DOMS (delayed onset muscle soreness). On days where this was particularly intense I listened to my body and rested. This is something that improved with time.

I do not believe you have to follow my exact programme of exercise to recover. You could interchange the recumbent exercises I did for ones more accessible to you. The most important part of this routine is consistency and dedication. It is also worth noting that I was taking 40mg of propranolol three times a day during the beginning stages of my recovery. I gradually reduced the dose at a later stage and now take no medication.

Recovery is not linear and will look differently for different people. I am incredibly fortunate to have reached a place where I am symptom free and able to return to university. As POTS varies so much from person to person, so can recovery. I am writing this not as an instruction manual for guaranteed recovery, but as an account of how I helped improve my POTS. Implementing some parts of this routine into your own may offer you some small improvements in your life. I am only an expert in my own experience and can only speak for what helped my individual case of POTS.

Part Two

My Routine

Week1

I began my recovery with a pack of resistance bands from Amazon. I used the lightest band and followed the British Heart Foundation's resistance band programme online. I did this circuit twice a day, once in the morning and once in the afternoon. I did 3 minute sessions of rowing and cycling, split throughout the day. I also followed very gentle YouTube yoga videos described as 'yoga for POTS'. I was extremely slow and careful with these exercises and used my Apple Watch to track my heart rate, aiming for it to stay underneath 120bpm. I did not push myself to my limit, and was very mindful of not overdoing it. In between these exercises I rested.

An important element of recovery is taking rest days. As annoying as it may feel (it certainly did for me!) to take a day off when you feel very motivated, it is crucial to keep you from injury and overdoing it. I had a rest day roughly every 3 days.

My days on that first week roughly looked like this:

  • 10am resistance band circuit
  • 10.25am 3 minute row
  • 11am 3 minute bike
  • 11.25am online 10 minute 'yoga for POTS' video
  • 12pm lunch
  • 1pm resistance band circuit
  • 1.25pm 3 minute row
  • 2pm 3 minute bike
Week2

I kept roughly to the same schedule during my second week, although I increased the first bike session to 8 minutes, going incredibly slowly. I also added a 'glute focused workout', in which I did exercises like bridges, leg raises and clamshells. I did this all on my yoga mat and spent roughly 10 minutes slowly going through the exercises, aiming for 10 sets of each.

I had been advised by my cardiologist to increase exercise by 30 seconds per week. Although I found this initially daunting, I actually found that I was naturally increasing by MORE than 30 seconds most weeks!

Week3

This week I increased my times. I did 3 minutes and 30 seconds of rowing instead of 3 and 5 minutes of cycling instead of 3. I also began to incorporate very gentle core exercises on my yoga mat as I was finding rowing to hurt my back. I put this down to my back compensating for my weak core strength and so I started to do exercises such as bridges and pelvic tilts. I found that I really had to start at the bottom with my core as I had lost the majority of my core strength from being sedentary. I also alternated glute exercises with the 10 minute yoga video.

Week4

This week I added in some squats. This was the first upright exercise I had incorporated and so only did sets of 7 split through the day. My days now looked like this:

  • 10am resistance band circuit
  • 10.25am 2 minute rowing
  • 11am 10 minute very slow cycle
  • 11.25am 10 minute yoga OR glute circuit, 7 squats
  • 12pm core circuit, lunch
  • 1pm resistance band circuit, 7 squats
  • 1.25pm 2 minute rowing
  • 2pm 2 minute rowing
  • 2.25pm 5 minute bike, stretch

I found it natural to begin to increase each exercise. That is not to say that it was easy. Exercising a body that has been unwell and sedentary is going to be uncomfortable. I found that I would wake up with DOMS most days, particularly as I started to increase to longer sessions. If it felt particularly strong I would take a rest day. I tried as best as I could to listen to my body.

Week5

This week was primarily the same as the previous week, with the exception of adding an additional 30 seconds to my cycling at the end of that day. At this point, I felt that I had a solid routine and focused on maintaining it.

Week6

During this week, I added some pilates style arm exercises using 1kg weights. I found these exercises online, and added the routine alongside the yoga video. I also began doing two yoga videos back to back as I found I felt able to do this.

At the end of this week I also went on a 20 minute walk! This was a huge achievement. It was a flat circuit and I went very slowly with my parents. After accomplishing this with no significant ill effects, I began to add a 20 minute walk every few days in my routine.

Week7

This week followed the same routine as the previous week, with the addition of one 20 minute walk.

Week8

This week also followed the same routine, and for the first time in 3 years I took my dogs for a 20 minute walk!

Week9

This week, instead of alternating the glute workout with the yoga, I did both on the same day. My days were gradually becoming fuller and I was feeling more confident in all of the movement I was doing.

Week10

This week I doubled the distance of the walk I had been going on. It ended up only taking 30 minutes as my pace and confidence had gradually been increasing!

Week11

This week continued on like the rest, with walks being added on the end of my day of exercise. If I was going on a longer walk, that would be my activity for the day, however if I was doing a day of exercise, I may only do a 15 minute walk.

Week12

My days now looked like this:

  • 10am resistance band circuit
  • 10.25am 2 min rowing
  • 11am 10 minute slow bike
  • 11.25am core workout
  • 12pm 2 minute row, lunch
  • 1pm resistance band circuit
  • 1.25pm 2 minute rowing
  • 2pm 20 minute glute focused workout
  • 2.25pm 2 minute rowing
  • 3pm 6 minutes cycle
  • 3.25pm 15 min yoga

I would sometimes go for a short walk at the end of the day, and also trialled walking up the stairs in my house occasionally. At this point in my recovery, I felt confident enough in the strength I had built to add extra movement into my day. For example, I may get up and just walk around my house, or stand up and do calf raises. I would also try and do things like baking, which I used to love to do. I would have to adapt it to be sat down but the extra movement was helpful for my recovery.

Week13

Cardiology follow-up

This week I had my cardiology follow up appointment. When I had attended my first appointment I was in a wheelchair, pushed by my mum. This time I walked in. Not only that but the previous day I had been on a 40 minute walk. That walk feels significant to me, as I really felt like things were slotting into place. I had an overwhelming feeling of recovery.

My cardiologist was very pleased with my progress and I was filled with motivation to push through and reach a full recovery. From this point on, I used the outline of my routine and added in extras where it felt natural. Over the following months, I would add more walking, more pilates and more strength training. As I am writing this I have reached that point and am now fully recovered. My life is not limited in any capacity and next month I am returning to university. I would say that it has taken about a year since I first started my recovery to reach this point.

I know how daunting it can be to have hope when you have been disappointed so many times. I left my first cardiologist's appointment with hope and it felt scary. But for the first time it also felt like I had some control. After years of feeling at mercy to my illness I finally felt like there was something I could do to take my life back. I do feel angry that I missed so much when I was ill. But I use that feeling now to live fully. Going on a walk with my dog feels like a gift.

When I was in the depths of my illness, I would sometimes imagine a recovered version of myself sitting at the end of my bed, encouraging me to carry on. On days where I felt particularly hopeless, I would imagine this healthy version of myself saying 'do it for me'. If I could go back now and sit at the end of my bed, I would tell myself that it can and will get better, and I would thank myself for carrying on. She did it for me.

During my recovery, I found it incredibly helpful to create Pinterest boards of inspiring quotes.

Here are some quotes I found particularly helpful in my recovery.

Tomorrow will be better, and if not, I will say it again.
The day you plant the seed is not the day you eat the fruit.
I don't realise how far I have come because I keep raising the bar.

Part Three

Additional Help

A few other things — alongside the exercise programme — that made a real difference.

  • An important aid to my recovery was salt supplementation. Every morning, I would drink a pint of LMNT electrolytes over an hour before I got out of bed. Additionally, in the middle of the day, I would drink a pint of Humantra electrolytes. I found salt supplementation incredibly helpful, and even found it slightly eased symptoms before I started exercising. I now do not take any salt.

  • I tried to reduce as much processed food from my diet as I could. I focused on whole foods, a diverse range of plants, protein and eating enough to fuel me. I struggled with many food intolerances during my illness, namely gluten, and by a few months I had successfully incorporated it into my diet again. To this day, I prioritise whole foods in my diet, and strive for an 80 to 20 ratio of whole foods to UPFs. I find a diet of 100% whole foods too restrictive.

  • I also incorporated nervous system regulation into my daily routine. I would end the day with meditation and EFT tapping. I used an app on my phone and would noticeably relax after.

  • I was recommended a Visible arm band by my cardiologist in my first appointment. It is a heart rate tracker that you wear on your arm which uses the data it collects to help you manage your energy for the day. It is designed for people suffering from chronic illnesses like long covid, and has a focus on pacing rather than exercise goals. The app gives advice on when to take it easy and reduce activity for the day, however I was told to listen to my body over the app. Given that I already had an Apple Watch which tracked my heart rate, I stopped wearing it after a few months, however I may have found it more helpful if I did not have my watch already.

Walking a mountain trail with my dog, looking out over a green valley

I am especially grateful for the guidance and support of Dr Khalid Khan and Dr Polly Keep.

If you have any questions please email me at Milly@potsandplans.co.uk