My first diagnosis of a chronic illness struck me as though I was grieving for a lost life. It took me years to realise that I was grieving a lost life, I was mourning for the healthy life that had slipped through my grasp. This was the only life I had ever visualised until the day I became unwell. As a child I had been lucky, healthy, happy and loved. I spent most of my young days unaffected by the concepts of pain and sickness. Until I turned nineteen.
For some, chronic illness sneaks up upon them over the course of years, even decades, like an insidious vine wrapping its way around skin and limbs, squeezing its way to a descent of physical and mental health. For me, chronic illness grabbed me by the throat without warning, twisting me from an energetic teenager bursting with excitement and potential, and slamming me into an unrecognisable world of hospital wards and medical jargon.
It took just two weeks. My body failed me completely over a fortnight of vague symptoms that had only just prompted me into making a GP appointment. That midnight dash on a Sunday evening into an unfamiliar A&E with a dangerously high heart rate is burned into my mind and into my soul. If I close my eyes I can picture it, I can feel it. I can even see the baffled faces of the doctors who were out of the depth and the strong but tearful faces of my parents. After many months of tests, stranded and bedridden, a doctor googled my symptoms and set me on my path to a diagnosis.
After travelling to London by ambulance I had a tilt table test. For anyone who has never heard, seen or experienced this test, it is a bizarre thing to behold. After being strapped to a table with my vitals monitored and then manoeuvred to a standing position- I developed a long blank space in my memory that lasted for months. This is partly because I fainted, a symptom that can occur with my condition, but I attribute it almost entirely to shock. The shock of the monotone voice of a nurse telling me that I had Postural Orthostatic Tachycardia Syndrome as if she was announcing what she was having for dinner that evening. I asked what this long-winded meaningless term meant for me, and was bluntly told it meant ‘I was screwed’. Since then, thankfully I have never encountered another medical professional who has been this cold and indifferent. Nor one that made such sweeping generalised conclusions about a syndrome that is so varied with chronic conditions affecting everyone differently. For every person suffering, I know that we all share so much in common whilst simultaneously surviving in as diverse a manner as humanly possible.
When I was travelling back to my local hospital, I cried. I cried by myself for longer than I thought I could cry for. Eleven years on and sometimes I still cry. I am releasing a pressure valve of anger, fear, sadness, and distress and letting it go so I can get up and carry on with the day. I have always tried not to weep uncontrollably in front of others, but when I did for the first time, I realised someone else wanted to absorb my pain and sadness. Just sit with me and acknowledge it rather than stifle it.
By the time I was eventually discharged from hospital I felt relief. To have a name for what was happening to me. I realised how important it had been to know what was not working inside my own body and that without my diagnosis I had been in a constant state of limbo. Emotions are never unusual-NEVER. We have an in-built flight or fight response to everything in life. To feel fearful, overwhelmed and want to run, hide and bury our heads in the sand. We feel anger, defiance and a will to try and overcome obstacles. If I have learnt anything from a decade of a rollercoaster of emotions, it is not to deny my feelings. To express them and express ourselves whenever we need to.
I mourn the person I might have become, the things I might have done, places I might have gone and people I might have met. It is OK that I do this. It can be hard to feel grateful. But I am grateful for the people I know and the love I didn’t recognise beforehand.
What is PoTS (Postural Orthostatic Tachycardia Syndrome)?
Tara gives a rundown of the condition which dominates her life
It is a syndrome-which is a collection of symptoms. It can be severely debilitating for some although only mild symptoms in others. It can affect anyone although it is most common in girls and women. The onset can be gradual or very sudden and symptoms can improve with medication and life style changes.
A normal autonomic nervous system controls your heart rate and blood pressure when you sit or stand. As gravity pulls your blood downwards, your body works to narrow blood vessels, and keep blood flowing to your heart and brain.
For those with PoTS, the autonomic nervous system does not work properly. As gravity pull blood downwards when sitting or standing, the blood supply to the the brain and heart drops. The heart beats quicker to compensate for what is going wrong, leading to tachycardia.
A diagnosis of PoTS needs a persistent increase of 30 beats per minute or more in a person within ten minutes of standing upright. Most people diagnosed with PoTS will also notice symptoms ease when laying down. Not all PoTS patients faint and a change in blood pressure is not necessary for a diagnosis.
Symptoms of PoTS
- Intolerance to cold or intolerance to heat
- Flushing (redness and burning of the skin)
- Difficulty in concentrating
- Problems with stomach and bladder
- Sweating or absence of sweating
- Tachycardia (fast heart rate)
- Dizziness or fainting
- Chest pain
- Shortness of breath
Some find symptoms can be eased by:
- Staying well hydrated
- Eating smaller meals
- Avoiding stress
- Wearing compression stocking
- Increasing salt intake (on advice from your doctor)
- Avoiding extreme heat
- Avoiding alcohol or caffeine