STARS Patient Information
This year, I was diagnosed with postural orthostatic tachycardia syndrome (PoTS), following twenty years of illness. PoTS is a dysfunction of the autonomic nervous system, the system that regulates the involuntary processes of our organs, such as heart beat, blood vessel widening/narrowing, heat regulation, etc. PoTS makes the system go a bit squiffy (although admittedly, that may not be the scientific term for it). Diagnosis is made through a combination of tests, but ultimately, the tilt test.
In 1993, aged 17, I developed recurrent fainting and other debilitating symptoms following a bout of chicken pox. Despite my dominant symptoms not matching those of classic M.E, I was diagnosed with M.E six months after the symptoms began. Further investigations were short-lived and my symptoms were eventually put down to anxiety. Although aware that I had developed anxiety as a result of the nature of the symptoms, the anxiety diagnosis became a barrier to being investigated further.
That all changed 17 years later in 2010, when I visited a GP for a routine appointment. The GP looked over my notes and symptoms, frowned, and asked me if I’d been diagnosed with anything else. The GP explained that whilst dizziness, fatigue and joint pain, and some of my other symptoms weren’t questionable as symptoms of M.E, the fainting and the sensation of constant unsteadiness that I experience when anything other than horizontal, were . Two years of investigations followed, during which time I found and contacted STARS. They really did live up to their name and have given me invaluable support and advice ever since. As well as my GP and cardiologist at Papworth hospital, STARS finally helped me get the right diagnosis.
Over the years I’ve taken different approaches to being ill, and it took a long time for me to realise that making necessary adaptations didn’t equate with giving up. These days, I’ve got grab rails in every room, knee pads to get from one room to another on bad days, a kneeler for tasks like cleaning my teeth (to kneel on, not brush with), and my bed is in the living room, where I spend most of my time. The hardest decision for me was to accept a wheelchair with seat belt from the NHS, which I didn’t do until I had been ill for a decade. I thought that it would be a step backwards and disable me further, but in fact it’s had the opposite effect. Further adaptations enabled me to begin work as a freelance cartoonist from my bed, and I’ve developed a genuine passion for it, regardless of it not being the career that I was studying hard toward before becoming ill.
Finally seeing my diagnosis of PoTS in black and white has had a massive impact on me, and not just the obvious hope for improvement. Having seen the graphs from the tests, it’s oddly reassuring to see and learn the process and mechanisms of what’s happening to me, rather than just experiencing it. I still find it terrifying at times, even twenty years on, but being able to begin to understand it, has taken a chunk of that fear and isolation away. I’ve now started on vasoconstrictor medication as our first path, and have also been stacked up with helpful advice from the hospital on how best to manage the symptoms.
Occasionally, I pause briefly to grieve for the things I miss out on, such as driving, going out to socialise, or having my own children. I don’t have far to look for the rich blessings though: I married my soul mate, whom I met in an online M.E support group. We had a rather unusual wedding, - a quick ceremony sitting on the floor, led by a very open minded registrar, with just a handful of understanding family and good friends. I’ve got a job that I love, a close family, a precious stepdaughter, the best friends that I could have wished for, despite never having met most of them in ‘real life’, and a ridiculously funny dog who is a constant inspiration for my cartoons!