Life has changed…and so have I.
My Story.
By, Alex
“I have come on further than I believed was possible at the time of diagnosis.”
The ‘Old’ Me:
I never considered myself someone who was ‘good’ at school. I scraped through my GCSE’s and only passed my A levels because, thanks to covid, I never had to sit any of the exams. I have exactly 0 academic achievements, and the only subject I truly enjoyed in school was PE. Any time I received an award it was always due to sporting involvements, and until recently even my own biggest personal achievements had come through playing netball. Sports for a long time was the only thing I was sure I was good at- the only time I felt like my purest self and the thing that made me the happiest.
The Beginning of the End:
In September 2020 following the first covid lock down, I left the Isle of Man, my home for the last 18 years, and moved to Manchester to begin my studies at University. A huge reason for why I had chosen to study in Manchester was due to the sporting opportunities they had and the standard of netball available here. Nine days after arriving in Manchester, I tested positive for Covid. I had been to netball training with a new club only twice in this time.
Whilst I was definitely symptomatic, I never considered myself ill. I was tired most of the time, didn’t eat much, and had little energy. That was about the worst it got. I rang my family to reassure them I was okay as they were rightfully worried about me having covid and being in a different country (the borders were officially closed at home in the Isle of Man so I couldn’t come home and they couldn’t come to me!) I remember saying “there’s nothing to worry about, I’m young, I’m healthy, I’m fit, I’ll be absolutely fine”. The irony of these words still makes me kick myself. I wish I had known then what I do now. As soon as my 10 day isolation period was over, I went out that night and every night after that for a solid 2 weeks. I’d completely forgotten that I ever had covid and didn’t seem to think much of it.
Fast forward a few weeks and the UK announced they would be going into a second lockdown. With border restrictions being so strict at home, I decided to go back whilst I could instead of staying in the UK for the lockdown. I hadn’t played netball properly for months due to the first lockdown; and with restrictions ever changing in the UK, I only ever got to train those few times in Manchester. At home it was a completely different story with covid, there were no cases, no restrictions in place and no reason I couldn’t play netball anymore.
I threw myself straight back into trying to get fit and ready to play again, and this is when all my problems began. I went out for a run in March 2021, 6 months after I had tested positive for covid. My run felt shocking, I was unfit, barely even running and could feel my heart beating out of my chest. I looked at my Apple Watch to see a heart rate of 203BPM. For some reason this never alarmed me - I thought the watch was just broken (despite it being brand new!). I carried on struggling through my run until I had to stop because I could no longer see, everything had gone black. I got home, told my family what had happened, and we all brushed it off assuming I had just become unfit whilst at uni which seemed more than likely. This carried on for some time, I struggled through training, through my netball matches but it was only ever when exercising. I’d decided after a few weeks, enough was enough. I was getting frustrated that I couldn’t perform in sports the way I wanted to, and decided to ring the doctors.
After I explained to them what had been going on, I was told it was perfectly normal for my heart rate to elevate when exercising and so long as it was only during exercise there would be nothing to worry about. 'Great', I thought I can keep playing netball- the thing I couldn’t do for so long during lockdown. The thing that made me feel the most me. I went to training that night after the call with the doctor and felt awful. I just about managed to get through the session, and once I got home, still didn’t feel any better. I also noted that my heart rate hadn’t come down at all. I went into A&E that night and spent hours waiting and hoping for an answer. I didn’t get one. I was told my high heart rate was probably due to a potassium deficiency and was given a supplement to take for 2 weeks. 2 weeks passed and nothing seemed to change. I was now struggling with my symptoms daily, as opposed to just when I was exercising, and hadn’t even been exercising during this time as I was advised not to. I was discharged from the hospital’s care with worse and more consistent symptoms than when I had gone in.
My first overnight stay in hospital whilst still seeking a diagnosis.
I fought pretty hard for answers, and managed to get through with the GPs after many, many attempts. They eventually referred me for a 48 hour Holter monitor and an echocardiogram. I had the same results as I’d had when I first went into hospital- they couldn’t find anything wrong and again, I was left on my own with increasingly worse symptoms. After a few more weeks of trying, I was referred to the local cardiologist to be seen. There are 85,000 people living on the Isle of Man and 1 cardiologist. I was very optimistic (or naive) about when I would get an appointment with him. 2 months passed and I still hadn’t heard anything about when my appointment would be and I also hadn’t exercised in 3 months since my visit to A&E, as advised. Every day my symptoms were getting worse, the palpitations were crippling and I had burning pain across my chest and struggled to breathe – I thought I was dying. Day-by-day I was losing sight of the things I loved and felt so far from myself.
I’m lucky that circumstances allowed for me to see the cardiologist through a private appointment. I ended up getting an appointment one week later. Within a few minutes of me explaining what had been going on he said “sounds like you have post- covid POTS, it's a recognised phenomenon”. It was great that he knew what was wrong, but I had no idea what POTS was. nd no one ever really took the time to sit down and explain it all to me at the time of my diagnosis, so google was my only source of information.
A trip to London awaiting testing with a POTS specialist.
The Darkness
Since getting diagnosed with POTS in June 2021, almost everything I know about POTS came through living and breathing it. The GPs didn’t even believe in my diagnosis and the local cardiologist taught me very little on how to live with it. I spent the next many months improving certain symptoms through medication and gentle seated exercise and severely worsening others through little knowledge of how to manage them.
I struggled through so many days at work, got sent home more days than I was in at one point. In gaining a diagnosis I lost the thing I’d always been best at, exercise. Whilst the physical symptoms of POTS are debilitating and disabling, so much so I found myself relying on a wheelchair for a good period, the mental side of going through this almost alone, and no longer recognising myself at all was the worst.
I spent a good few months leading up to December 2021 trying to yo-yo between managing my symptoms, trying to keep up with work, accepting netball wasn’t on the cards at the minute and very rarely seeing my friends due to being too ill to keep up with them. I struggled with the acceptance and understanding of this diagnosis, and I was the one living with it. I didn’t think anyone on the outside would be able to understand it let alone accept the ‘new me’ who at the time, I disliked so very much. In December 2021, I caught covid yet again, which triggered my first major POTS flare. This sent me into a pretty dark depressive episode where things quickly got a whole lot worse.
With the health flare, I lost pretty much all progress I had been able to make in the gym since my diagnosis. I was practically bed bound for about a month. Come January/ February time I was feeling pretty lost. I didn’t understand how anyone could live like this, or why they would even want to. I’d completely given up on myself.
During the darkness and the loneliness, I realised very few of my friends and the people around me realised what I was going through, and how deep of an impact it was having on me. I decided to make an instagram account to share some of the highs and lows of my experiences with POTS in the hopes people would begin to understand what I was dealing with. I also hoped to come across some other potsies going through the same things.
My instagram account came at the perfect time. It gave me something to distract myself with and gave me a little bit of purpose back whilst I couldn’t exercise, netball was still non-existent, and I was too sick to work. I also found myself doing more things to look after myself and improving my symptoms as I wanted to share more about what and how I was doing.
Light at the End of the Tunnel
Through my instagram account, I have connected with people who also have POTS from all over the world and a few of them even asked for my advice - I couldn’t believe that anyone would ever want my help. I’ve pretty much only ever been of any use to anyone in a sporting situation, I didn’t think I was capable of offering people the help they were looking for. Turns out through having to figure out this condition on my own, I’d picked up on quite a few tips that were beneficial to others.
I also got my own help through the account. I found someone who had been living with POTS for years and improved her symptoms so much she was competing as a bodybuilder! This immediately restored every hope I had in my own body’s capabilities. Lucky for me she’s also an online coach, helping other people with POTS and other chronic illnesses. Rosie’s been my coach for just shy of a year now and I was so relieved to not have to figure this all out on my own anymore! I gained so much knowledge about my body so quickly, put in a lot of hard work and improved my condition A LOT as a result.
After only a few weeks with all this new knowledge I had a lot of energy back and felt up to going on a trip with my family. Across the course of the trip we did a lot of activities (walking and even a zip line). This was the first time in over a year that I felt like I was actually living again rather than just surviving.
Everything changed from then as I realised how much life I had missed out on being so fixated on a past self who didn’t exist anymore and certainly didn’t seem like would be back anytime soon.
I stopped thinking ‘why did this have to happen to me?’ and switched to ‘why not?’ There was nothing special about me before I got POTS. It could have happened to anyone and it just so happened to be me. Whether I was accepting of the situation or not it was still going to be here. The narrative switched to: what can I take from this situation and what can I give back from this?
The answer to both, to my surprise, was a lot!
There was a lot to take from this. I realised my pre-POTS self wasn’t always a great person. Pretty self-centred, not very understanding, didn’t have much time for others and only interested in one thing, netball. What I have got out of this since changing perspective is a totally new understanding of myself. No longer defining myself as, “just a sports person,” I’m in fact a lot more than that. I’m kinder now, more understanding and empathetic, and I appreciate all the small things that I used to take for granted so easily. I still love exercise and the ability to move my body. This is something I never take for granted now. After struggling for so long to stand up for even a minute, I appreciate every opportunity to do it now..
I’ve been able to give back, raise awareness and money for POTS and connect with other people like me and share experiences and truly help – this is now up there with my greatest achievements as opposed to where my Sportswoman of the Year trophies used to take pride place.
Where I Am Now
Last September, 2 years after I first got covid, I restarted my studies in Manchester towards my Physiotherapy degree after dropping out due to ill health. I didn’t think I’d ever be able to live independently on my own, in a country away from my family and my support system. I didn’t think I’d want to come back to the place where I first got ill and triggered the onset of my POTS, but it is so good to be back working towards what I want.
I very recently ran my first 5km since being diagnosed with POTS, again something I never saw as possible especially after the day my vision went black during a run. In the summer I raised awareness and money for POTS UK by walking a 30km distance, 4 months after relying on a wheelchair to leave the house.
Life has changed a lot to say the least, and so have I.
After taking part in the Parish walk where I walked 30km to raise money and awareness for POTS UK.
I still have my fair share of struggles day-to-day that come with POTS, but I have come on further than I believed was possible at the time of diagnosis.
It’s been such a rough road getting to this point, but I wouldn’t ever change it. I’m grateful for all the support I have around me now. I’m grateful to be the glimpse of hope for other people with POTS that I needed when I was diagnosed, and I am grateful to have been able to find myself without defining myself or limiting myself to just one box anymore.
The first time I was able to run for more than a few minutes again and manages 1.5 miles
Thank you to our primary sponsor, Vitassium by Salt Stick.
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