Basingstoke Team Parish

Charlotte: What It's Like To Live With PoTS

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In June of 2014 I collapsed to the floor, clenching onto my chest as a result of an excessive heart rate my body was suffering from. I had suffered from SVT (ANVRT) since around the age of thirteen, so knew perfectly well what to expect from such a non-life threatening arrhythmia, yet never had I experienced such an episode before.

Body shaking uncontrollably from the force of the beats, I started to loose all sense of strength and ability to use my muscles. I gripped onto my loved ones hands, hoping and convincing myself to believe that I would pull through whatever was happening to me. My vision, hearing and sense of who I was had slipped away within just a matter of minutes.

After an hours wait for an ambulance I was rushed into A&E as a severe case. Terrified by the mutterings of doctors using words such as ‘heart attack’ and ‘stroke’, I knew that whatever was happening to me was life changing. After many hours, tests, doctors and results later I was diagnosed with nothing more than ‘a bit of anxiety’.

I arrived home with a destroyed body and an inconclusive diagnosis. I shakily lifted one foot onto the first stair with a painful and highly discomforting body, and tried with all what was left of my determination to pull my body upwards, but it was hopeless. I took an hour climbing thirteen stairs. I was just nineteen and my body was treating me like I was aged and dying - and it was utterly heartbreaking.

From June until Christmas I was bedridden with essentially no quality of life. In the Summer I was unable to even lift a finger and would lay in bed with horrifying thoughts and a glaze of shock as to what I was suffering from. I was unable to walk to the toilet just seven or so metres away and gave into using a bed pan. I could no longer string a sentence together and lost all ability to use every part of my body. I would be sick several times a day and my digestive system lost all ability to work efficiently. I lost all memories and would shake from dawn until night, crying hysterically at what was happening to me.  I will always try to forget one of my worst memories where I held my bladder for twenty hours or so, as each time I went I would reach an incredibly uncomfortable heart rate alongside an inevitable faint which would cause me to be sick from the pain my body was being put through. To go from relatively well just weeks earlier and able to walk without thinking, to it being something I would have to reteach myself a second time in life was incredibly demeaning, especially when I was the only help I could get.

Throughout this time I would beg for medical help to give me some sort of conclusion for the excessive heart rate I was suffering from even when I spoke, to physically being unable to turn from side to side in bed - but unfortunately there was still no conclusion and I began to believe that my doctors answer that I was “too attached to my body”, “all in your head”. “selfish”, and “that your parents are too soft on you” were all that I was.

I began to rebuild my life independently as my doctor was pretty much useless in understanding that I was ill even at all. In the Autumn I began to be able to sit up in bed for longer than twenty seconds, to standing for a minute, to being able to sit on an actual toilet (with the help of a wheeling office chair to get me there). I was still excessively shaking from when dawn until night, with only parts of my vision and hearing, with a heart that would thump away at any movement, not to mention my dangerous drop in blood pressure any time I sat up in bed or stood, but my body was moving, which is more than I had dreamed of months earlier.

A whole year later I finally had my diagnosis of Postural orthostatic Tachycardia Syndrome (PoTS) via a Table Tilt Test. The diagnosis was incredibly cathartic for me, as at my worst I contemplated my own life due to the lack of care or belief I had received from my doctor, cardiologist and general medical professionals. Although I had been diagnosed with a syndrome that is incurable and one that would impact my life very much so, I believed that it had indeed happened for a reason and that I could do something positive and powerful out of a life that was so horrific and negative.

I celebrated my twenty-first birthday last week. Although I celebrated it in my wheelchair, I was able to stand up, lift my own cup, smile, sit up, unwrap my presents, talk, and laugh! It was more than I could have imagined just a year before, when I was watching my lip muscles so closely in my mirror, trying to re-teach myself how to smile and spending my day bedridden, dwelling on what life had given me.

I am very lucky to be able to have a better quality of life now, but it’s important to remember that my best is some peoples worst. It’s something that I’m accepting and learning to live with, blue badge, wheelchair, compression stockings and all. I hope to make a full recovery using the help of lifestyle changes and general support from my specialists, but I am still unsure of my prognosis and if I will recover even at all. I do believe that I am fighting back strong as I can do things that I could not have dreamt of doing just a year ago, and so many people will not be as lucky as I have been. Due to there being a significant lack of awareness and funding for PoTS, many patients quality of life at the moment is desperate and inconsolable. There are thousands, even millions of patients living with this common syndrome (many unknowingly) which I believe we can advance on hugely, both medically and socially; it just takes understanding, empathy and comprehension for us to proceed, and that’s through funding and awareness.

Wonderful charities like PoTS UK are fundamental in making positive advancements for patients with PoTS, so all the help that they can receive is very much appreciated.


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