Molly: Let PoTS empower you, not overpower you
I wanted to share with you my story of PoTS, to inspire any suffers out there that endurance, courage and bravery are the key to a healthy successful life with PoTS, and the key qualities I know we all possess as we get by from one day to the next.
I was diagnosed with PoTS at the end of August 2015. After struggling with ill health from 2013 I knew something was wrong, and reaching this diagnosis finally was a relief to say the least. When my symptoms first started in 2013 I felt weak, tired, breathless and unable to do the simplest of tasks like walking the stairs, reaching for things on shelves, bending over and carrying even my handbag. My symptoms overcame me within a month so my health was a very rapid decline. At this time I was only 18 years old. I should have been a bundle of energy and life at that age and the fact that my body felt exactly the opposite was a huge concern for me and my family. I went to my GP surgery on a weekly basis with all of the symptoms that were progressing. Each time I was dismissed as simply stressed and anxious and told to take regular breaks at work, and to try breathing exercises to clear my mind. This left me frustrated and feeling completely scared and alone.
My silent battle continued into early 2014 when I had a heart episode for eight hours with a pulse rate on average of 210 beats per minute. This episode sadly was not recorded by doctors on an ECG as I stayed at home and endured the symptoms due to fear of rejection of help at the hospital – in hindsight this was a very terrible idea as if my tachycardia was recorded I may have been treated earlier. After this episode I knew now for sure something was very seriously wrong, so took it upon myself to fight for a diagnosis from the doctors. I changed GP’s twice, until finally in 2015 I met a doctor who shared my same concern for my symptoms and agreed to help me find out what was going wrong. This sparked a transfer to the cardiology unit where I was put on 48 hour heart monitors, had bloods taken and a full heart scan also. After three months I was booked in for a tilt table test and my results were astronomically positive of PoTS. Hurrah finally!
Since my diagnosis I have faced many challenges. Now at the age of 20, sadly I cannot walk very far let alone exercise properly, so my dancing days on the weekend with my friends are sadly over. When you face a chronic illness like this they say that friends are key for a positive outlook – but unfortunately as I can no longer join them on the activities they enjoy, they do not find time to accommodate me in their busy lives and I now face my daily illness without a friendly support. This at first was extremely hard to come to terms with – I was so angry that my illness took away my freedom to do all the things young people should be able to do, that it took away all of my friends and the adventures I had planned like taking some time out to go travelling. Also, sadly my PoTS is being treated as one of many auto immune diseases and have further been diagnosed with Fibromyalgia, Raynaud disease and am under investigation for Chron’s, MS and several other diseases under the same umbrella. It’s a lot to deal with especially juggling this with a full time job!
I am however, dealing with it all. And this is the point I wanted to make by sharing my story. Living with something like this is a journey, not an ending. My illness has changed my life, not taken from my life like I initially felt. By not being able to do all the things I used too, I have learnt to appreciate all the things I once took for granted – the things I still can do. I stop to smell the roses, enjoy the fresh air and the warmth of the sun, the happiness of a blue sky. When I have a good day, I cherish them and not just forget them. And with each day that I can walk a little further, or do a little more, the sense of pride and accomplishment is more fulfilling than anything I felt before my illness. I now have the confidence in myself to be who I am now – and it’s this self-confidence I now have that led me to recently meeting my loving new partner and for us to take the step of moving out and moving in with each other. I now have him as an incredible support system and with all that affection my illness each day seems more and more manageable. Whatever battles you are facing and no matter how hard it all feels – there is new life to be found and new happiness to be made. With some endurance, courage and bravery you can get through this and live a life you are proud to lead. Let PoTS empower you, not overpower you.