James

In July 2013, I had just returned from a month-long business trip abroad. Despite the significant time difference, I attended the office less than 12 hours after landing. I was tired and never really allowed myself time to recover from the jet lag. As the next few weeks went by, I was exhausted, particularly in the afternoon. I found myself struggling to focus, and I was physically sick after eating.

There was the onset of severe headaches, too, and I would randomly feel extremely dizzy when standing. I continued working, trying to avoid these growing concerns, but eventually had to acknowledge I was unwell after I fell while crossing the street. I went to see my doctor the following day and was temporarily signed off from work. My GP was excellent, and although she couldn’t explain my symptoms, she believed what I was saying and referred me to other specialists.

The next few months were a blur of worsening symptoms and many different tests and appointments. At first, we ruled out severe and possibly terminal causes, particularly cancer or physical trauma in the brain. After a while, I was seen as an inpatient for a lumbar puncture. My bloods were taken multiple times, but still, no answers presented themselves. Meanwhile, I hadn’t been able to work and struggled to leave the house without support.

A chance diagnosis

A chance appointment with an Occupational Health doctor, who happened to have trained on an autonomic unit, sent me a follow-up email after our meeting to suggest that it might be Postural Orthostatic Tachycardia Syndrome.

He referred me to a specialist in London, and I went to visit the following week. After months of reverse progress, where I felt worse rather than better, the consultant immediately agreed that he suspected PoTS and even suggested a secondary diagnosis of Ehlers-Danlos Syndrome.

In his clinic, I underwent a tilt table test – a fairly miserable but necessary experience that mimics the body’s response to standing while strapped to an upright table – and during the consultation, I got sick, very dizzy, and in effect passed out while upright. This, in conjunction with a few other tests, led to my eventual diagnosis of PoTS.

However pleased I was to have finally received a diagnosis and some practical steps to alleviate some of the symptoms, I was still far from working and had reason to consider using a wheelchair to get around. The most challenging symptom was, and still is, brain fog. This cloudiness of mind makes me forgetful, agitated, and less personable. All these years later, I’ve yet to find an effective way to reduce the severity of brain fog or prevent it.

During the most demanding moments while at home on my own, I started two blogs; one about my interests (mostly technology and music) and an anonymous one about PoTS and my experience with it. These were born of necessity for something to do, but the more I published, the more I suspected that I could at least earn a small income by writing online, so long as I could work flexibly around my symptoms.

Living with PoTS

Over the following years, I continued learning how my symptoms affected me, whether there were any patterns relating to severity (there weren’t, really), and how much I could do in a day. As I became more comfortable with my body and where my new limits lay, I applied for a few freelance writing positions, hoping that this would be a low-stakes way of returning to work in a small way.

In early 2016, I was offered a staff writing position with a consumer technology website, with a requirement of four articles per month. I figured it was about manageable, so I joined the team. After settling in, I realised I could probably do more than that in a month, and while retaining the flexible approach, I took on more responsibilities. Three years later, I was offered an editorial role, which I accepted after we agreed on working arrangements that suited my condition.

I’m very fortunate to have found a company that not only accepts that I have a long-term chronic condition but understands that it is essential to me to have flexibility at work. Rather than feeling anxious every morning, nervous that should I have a flare-up and not be able to work, I can progress at a steadier pace, accommodating any symptoms or flare-ups with space to recover from them too.

While I’m now better equipped to deal with the variability and unpredictable nature of PoTS symptoms, they are still there. I’ve come to accept that I may continue to have PoTS for the foreseeable future but that I can forge a different but no less rewarding life for myself. It’s not what I had pictured in 2013, but I’m comfortable with my difference, knowing that I’ve adapted to a life that’s generally better, despite the fluctuations in PoTS.