Shuffling Toward Hope.. My story

I have joined the shufflers. Late morning, before lunch, we shuffle slowly around the supermarket. The elderly shoppers, and me. We smile in solidarity and talk about the weather. I’m used to the strange looks when I park in the mobility park, and climb out of my car in my gym gear. I’m quick to put my mask on, as a visible sign that I need the park.

It’s a funny thing, health. They say you don’t appreciate it until it’s gone.

I’ve always known I was a bit complex. Born extremely prematurely, I was lucky to survive at all. Unexpectedly I thrived. Aside from a significant hearing loss I was a very healthy and active. I played many sports and loved to run and climb. I discovered music at high school, and have never stopped playing. I was the youngest survivor for my birth year, which gave me an appreciation for how thin the line was between surviving, and not.

In my 7th form year (year 13) I was off school for almost a term with suspected whooping cough. In retrospect, I was never the same after this. Being beyond exhausted became a normal part of my life.

Life continued – punctuated with occasional viruses. Unremarkable, aside from a longer recovery period than my brothers. My twenties passed, with a few 3-week periods off work exhausted, dizzy and unable to function. I saw several specialists, and no one was able to pin down the cause. Invariably I improved enough with rest to return to my usual activities. I started to wonder if perhaps I wasn’t very good at doing life.

Stress, overcommitting, and a very busy life with orchestra, a full-time job and other hobbies seemed a reasonable explanation at the time. What I didn’t spot was at that stage of life I could rest when I needed to, masking what was really going on.

I had difficult pregnancies. I became breathless with significant chest pain, dizziness and exhaustion. During my first pregnancy I was hospitalised several times while doctors tried to work out what was going on. Despite thorough testing as both an inpatient and an outpatient no diagnosis was made. The doctors reassured me that the baby was fine, and perhaps I had an underlying condition they weren’t able to test for due to the pregnancy. This wasn’t as reassuring as it was meant to be. The message was that my symptoms would most likely go away after I had the baby, as the extra stress of pregnancy on the body may have triggered this. The only thing that seemed to help was beta blockers (in retrospect, a clue). I was asked many, many times about my stress levels and anxiety. I was absolutely certain that the anxiety I experienced always followed my physical symptoms of a fast heartbeat, followed by dizziness (another clue). I started to question my judgement (and sanity!). Fortunately, I had an extremely supportive midwife, who reassured me that she didn’t think I was anxious.

Things did indeed return to “normal” after I had my baby. My second pregnancy was the same – although we knew what treatment had worked last time and were able to start this earlier. Trying to convince medical people I wasn’t anxious got old really fast. I felt that I wasn’t believed, and this affected my mental health. I had to stop work early between 24-26 weeks with both kids due to the physical symptoms I had.

The toddler years were extremely challenging. I had a difficult recovery from the birth of my second child, and ended up making the decision to resign from work completely when he was 6 months old. In retrospect, my compounding exhaustion was a key reason for this.

COVID hit, and life changed again. I managed to avoid being infected until late 2023. I have never fully recovered. I remember just dragging myself through the days, trying to keep up with the kids. I had the same high heart rate as my pregnancies and debilitating fatigue. I had no choice but to just try and keep going, and hope things improved. Wasn’t everyone exhausted with two kids at home? I remember many days at home with my toddlers, too fatigued to drive. I called them my “yellow tinged days”, as when the fatigue was really bad, I would see a slight yellow tinge at the edges of my vision. It was around this time I started seeing a new GP, who suggested perhaps I had long covid.

Over that summer, a friend who is a nurse was with me when I had an unexpected high heart rate and significant dizziness wandering around the garden at toddler speed (hardly high exertion). She was the first to suggest that perhaps it was POTs. I kept a symptom diary until I was able to see my GP, who confirmed it was likely POTs, and referred me on to a cardiologist for diagnosis.

Receiving this diagnosis in my 40s felt like a puzzle piece clicking into place. Suddenly, all the weird things that had been going on since my late teens made perfect sense. The symptoms I had during pregnancy were identical to those I’ve had since covid.

My diagnosis was hugely positive and emotional. It wasn’t anxiety, it wasn’t stress, there was a very real physical reason for what was happening. Finding out that the physical symptoms of POTs can cause anxiety (because the brain is freaking out due to the drop in oxygen) was a hugely validating moment. I’m fortunate that I don’t faint – I get a very strong sense that I need to sit down, and enough warning so I don’t faint as long as I sit down. This has also meant that my symptoms were subtle and trickier to diagnose. COVID increased my symptoms to the point where POTs was identifiable. The increase in awareness of POTs since the pandemic has undoubtedly helped as well.

Since my diagnosis I have been working my way through the standard POTs treatments. Compression, salt, increased fluids and dietary changes have all been parts of this puzzle. It’s funny how close I’ve been to solutions at various points in my life. I found compression and electrolytes much more helpful than I expected while playing lacrosse in my twenties, and had a salt addiction during intense training periods.

I am working my way slowly through the POTs exercise programme. While I know this is controversial for some, over time I have been able to understand my limits better (in consultation with my physiologist), and it has been a keystone of my recovery. It also brings much needed structure to my days, and goals to meet. The mental health benefits are so important as well.

Despite my diagnosis and treatments, I have still had some major setbacks. A second dose of covid two years ago knocked me further back than the first time. The recovery from this has been extremely slow, and led to a diagnosis of Mast Cell Activation Syndrome (MCAS) on top of POTs. Treating MCAS has allowed me to make much more progress with the POTs training programme, and my body seems to be able to tolerate heavier loads generally. Recently beginning beta blockers has also really helped. Unfortunately, I am still too unwell to work. The grief over how much covid has affected my life is real.

What keeps me going, and hopeful? I feel very lucky in many ways. I have been able to continue playing music (I am an oboist), even though at times this has been very difficult. I play seated (thank goodness!), and I am very fortunate to have supportive colleagues who have been tolerant of basic mistakes caused by brain fog. This has improved dramatically over time as I have persevered. I can’t emphasise enough how lucky I feel that I’ve been able to continue this. Music fills my cup in a way that is hard to describe. There is just enough socialising at rehearsals without being too much. The predictability of what I am going to hear mitigates the overwhelm. The automatic nature of playing my instrument (it is much like driving a car) makes it possible in a way that other activities aren’t. The performance itself leaves absolutely no space for any other thoughts, and gives a sense of achievement. It is meditative in the very best way. 

I have been lucky in the professionals I have around me, and to live in an area where I am able to access them. To be able to see a physiologist who is expert in dysautonomia. To have a GP who understands POTs and the treatments is not something I take for granted.

I’ve been thinking about hope lately, and what this is to me. The pragmatist in me says that just turning up and doing the thing is an act of hope. Just turning up to the gym. To do what the kids need. To rehearsal. Understanding that the flexibility to cancel plans and commitments when I need to is a part of my life now. And doing my best in that moment is enough, even if it often doesn’t feel that way. Recognising the wins, big and especially the small wins. These are often big wins in disguise. Looking over a long period of time has been the key to this for me.

Being well enough to shuffle around the supermarket, and talk about the weather.