I guess I have always been the outdoors type, if I'm outside I'm a happy guy! Five years ago a few of my best friends were doing a ski season in Canada, it sounded amazing so I decided to go. After three months of amazing snowboarding I was walking down the high street when my heart went crazy beating out of my chest, At the time I thought I was having a heart attack but clearly was not but needless to say I was quite scared (just lying in the middle of a street in the snow). I ended up in the hospital then a cardiologist neither could work out what was wrong. They just recommended I go home. Which is exactly what I did but first I had to navigate the airport, as I decided not to tell my airline as I thought they would bar me from flighting, it took me the full 2 hours to walk from the security checking to the gate (which was like 300m) but I made it. After getting home I went to the GP who at first glance said I was fine and turned me away. However, this was clearly not the case so I went back and made it clear something was wrong and got a referral. I ended up seeing prof Mathias who after some tilt table tests diagnosed me with Pots + EDS Type III. My first reaction as like most people was to go on the internet and look up the condition something I now regret as all I found was negativity (unfortunately I didn't find pots uk)
If I'm totally honest the first six months months were quite hard, finding it hard to walk any distance, and having to go from a extremely outdoorsy person to someone who couldn't walk any distance. But my mom had told me exercise makes the condition easier, at the time I couldn't imagine exercising as just standing for any period hard. But I started swimming at first not even managing a length of the pool. At the same time I was recommended to go onto midodrine, and later bisoprolol. I know midodrine works for some people but It only seemed to make me more ill. But the beta blockers were great enabling me to do small amounts of exercise. Over time I had built the exercise up to a point where I could go for reasonable road bike rides and swim a bit further, I would normally get ectopic while doing exercise which always felt weird but I was assured was a fine. I was living in Guildford at the time and my friends around me were amazing something that if I didn’t have would have made the whole thing so much harder to deal with.
I kept up the road biking finding it made a huge difference to my condition, I think as you gain leg muscle the heart finds it easier and your blood pressure goes up. I am quite determined so took this as a way to get better, so I went biking A LOT. Ending up doing a 80mile bike ride from London to Oxford, which broke me but showed that I can still go on adventures. Not to say there weren't bad days but exercise was the goal and whenever I didn't feel rubbish I would be trying to get fitter. Also my heart rate was super high doing these sports like most hills it would be 180-190 with average around 150-160 but I always wear a heart rate monitor and make sure it doesn't go over 200 and try not to think to much about it. The fitter I got the more it my heart rate would come down.
I ended up moving to Cheltenham for a better quality of life and I could still work for the same company which had been good to me. My job as an engineer accommodates me to be able to sit down the whole day which is great especially when I'm no feeling well. The move also brought me closer to my family which made a huge difference. Support is super important with these things and having people around you who are positive made all the difference. My brother who was also living in Cheltenham persuaded me to buy to mountain bike which in retrospect was the one of the best decisions I could have made. I found it really tough to start off with as the peddling is more intense than the road bike. But over the last three years I have got to a place where I can keep up with everyone else. This helped me a huge amount not just in fitness but having a new challenge to master and being outside all the time. I am very competitive and losing that initially I felt lost. I got to place where I could come off the midodrine which turned out to be really hard, I was on one dose a day tailing off and I felt rubbish after about 2 months of feeling ill I, dropped it completely and I immediately started feeling better.
For the time I have have had pots I have become a lot better at listening to my body and knowing when I am doing too much or feeling a bit overwhelmed, but the thing that has kind of surprised me is realising how anxious I am, something that I didn't really think I was. Also I have become way more anxious about getting ill/getting worse. Up until the last year or so I had been trying to improve my health with only exercise alone which has worked to an extend but without trying to take the anxiety I feel that was only half a solution. In the last year I have found meditation and mindfulness through an app called “headspace” doing 10 minuets a day I have seen a noticeable reduction in anxiety. This has resulted in a reduction in the number of ectopics I get and real reduction in my heart rate. So much so I have halved my dose of bisoprolol. I think this comes from the fact my body is stuck in flight or flight mode and so the levels of adrenaline are far higher than they should be which leads to me feeling anxious and then I start to worry. The mediation kind of breaks the cycle and gives me some clarity. For anyone suffering with pots I would highly recommend it.
As a combination of mindfulness and exercise I have really started to feel the condition doesn't have a large effect on my life. I have got to a place where I can do large road and mountain bike rides, I have been back on the snowboard. Personally one of the most meaningful changes is I have been able to rock climb again without having to come down because my heart rate got to high. This may seem small to most people but I pretty much build my life around climbing (before pots) and to be able to do it again is an amazing feeling.
For all the exercise do I still have large parts of the winter that I am unable to exercise as I get way more ill than I used to catching every illness which seem to have a large impact on my body. But I try to always think that this will be over soon and I will get back to being outside. However, a good part of the time now the condition doesn't have to much effect on my life.
I look at how far I have come over the last five years and am very proud of what I have achieved. I would never want this condition to define me or control what I do, something's have changed (not all in a bad way) but my love of life has not and I think that's the most important thing. When I went on the internet initially after being diagnosed I came away feeling very depressed I wish someone would have told me that there are things you can do to improve the condition and although my experiences are not going to be able to relate to everyone I hope some people see some similarities. Thanks for reading.