H e l e n 's S t o r y
"PoTS makes the system go a bit squiffy... that may not be the scientific term for it."
In 2013, 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 concern that there was something else wrong, led to a diagnosis of 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.
The day that I received the definitive diagnosis of PoTs was overwhelming. Finally I began to understand things that I had been asked to explain for years, but couldn’t, because I didn’t even understand it myself. Why could I walk a short distance but not stand still without fainting? I now understood that this was because when I was walking, the blood was pumping to my brain. When I stood still, the blood plummeted to my legs and I lost consciousness. My go-to answer for so many questions for years had become a pathetic “I don’t know why, it just is” but now suddenly I could begin to understand the process, and that knowledge removed some of the fear. 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.
"If an adaptation or aid will help you, then don’t let pride stop you taking it."
If I could give just one piece of advice to anyone with PoTs or a similar illness, it would be this: If an adaptation or aid will help you, then don’t let pride stop you taking it. It wont make you more disabled, it wont be giving in. I promise you. If something will open up opportunities and enable you to reach parts of life in even a small way that are currently out of bounds altogether, then that is enabling, not disabling.
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. A seizure helmet reduces injuries, and an adjustable overbed table enables me to use the laptop laying down. 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. That led on to them suggesting a specially adapted reclining wheelchair with leg raises, which has been the most enabling of the aids that I’ve had.
This Summer it will be 24 years since I first became ill. I lead a limited, but very blessed life, and I often wonder if I would appreciate the blessings quite as much if I hadn’t become ill.
Occasionally, I still pause briefly to grieve for the things I miss out on, such as driving, going out to socialise, or having my own children, but it’s strange how it’s often the little things that I yearn for more as I get older.
- Helen
Silly things like just leaving the house unannounced and by myself to run an errand, having a bath unsupervised, or simply giving my husband a hug standing up. Thankfully, I don’t need to dwell on the negatives for long as I’m so lucky in so many other areas of my life.
I’ve been incredibly fortunate in that I had, and still have, a supportive and loving family and friends to help me through. I have lost some friends along the way, but the most precious are still around. I don’t regret my misdiagnosis for one second, because if I hadn’t been diagnosed with M.E for all those years, I wouldn’t have joined online support groups which led to me meeting my soul mate, who is also now my husband, or my step daughter, or my best friend. Our wedding was led by a very helpful registrar that enabled us to get married sitting on the floor. It was certainly different from the traditional type of wedding, but was wonderfully intimate and special with only our very closest family and a couple of friends.
It’s been a very long road to this point, but I am now a professional dog cartoonist and have found wonderful new friends within both the online cartooning community and online dog community. 99% of my clients aren’t aware that the person that they’ve hired to draw their dog isn’t in a studio or study, leaning over a creatively messy desk, but is instead laying flat in bed with adaptations so that I can draw laying down. I like that working online gives me the freedoms that I can’t have in the physical world. It isn’t the career path that I’d intended to go down all those years ago, but I can’t imagine having a job that I’d love more than this one.
"Blessings can be found in the strangest of places."
Blessings can be found in the strangest of places. Some days I’m moving about the house on all fours as much as my dog is, which obviously wouldn’t be my preferred method of getting around, but on the other hand it does mean that I can get an insight into a dog’s viewpoint for my cartoons in a way that most other dog cartoonists don’t ever have the opportunity!