Laura: From psychogenic seizures to PoTS
Throughout my teenage years I was prone to syncope but it was put down to my age. In September 2011, I became very unwell and spent a few weeks in a specialist neurological hospital. Whilst there, they could not decide upon a definite diagnosis for what was happening to me but they did note that my resting heart rate was abnormally high (ranging between 120 and 160bpm). This was put down to stress. I was told that it was most likely "psychogenic seizures" and that I needed psychological help. I was sure there was something going on and that I wasn't just going crazy, I felt like a fraud. Not long after my discharge, I was admitted again to my local A+E with a collapse. I was seen by a fantastic registrar who believed me when I told him I didn't feel overly anxious and that I had the palpitations/racing heart most of the time. He referred me to a cardiologist and that started a long cycle of tests and appointments before finally reaching the POTS diagnosis in August 2012. It was a huge relief to finally know what was going on and know that I wasn't going mad! By this point I had had to take a year out of University, my social life had dwindled massively and I was thoroughly depressed...it feels weird to say that being diagnosed with a chronic illness was positive, but for me, it was the start of things getting better.
It's by no means been easy getting my life back, my POTS definitely has periods of relapse and periods of recovery. This year I've had a few hospital admissions but thankfully (fingers crossed!) things are fairly stable right now. I take a variety of medications including beta blockers and manage my POTS through lifestyle changes. My main symptoms are dizziness and syncope, fatigue, palpitations and tachycardia, severe reflux, muscle tremors, chest pain, joint pain and exercise intolerance. I still struggle with some symptoms daily but they no longer stop me from going about my everyday life and thankfully I rarely experience syncope these days! Some aspects of my life have changed...I used to go to the gym most days, now any exercise leaves me exhausted and fatigued. I can't always stand for the worship at church, I get very affected by heat. I have to pace myself and a busy few days need to be followed by time to rest and recover. I've developed a great support network of other POTSies and I use my blog to offload my brain. I avoid public transport at peak times if I can. I've learned to accept my limitations (most of the time) and come to terms with the fact that I will no doubt have further relapses and that I will always be the "girl who falls over all the time"! I have learned to take things at a slower pace, to accept that some people won't understand when I say I'm not feeling great but I have also learned to embrace the good days as and when they come.
I've just started a new job, working full-time which is something a few months ago I was thinking might never be possible. I'm beginning to pursue a new career direction, hoping to go back to Uni. to study nursing in a few years. Full time work is really hard but I love being a healthcare assistant and the shift pattern suits me. Although the days are long (12.5 hrs) it's only 3-4 days a week leaving me plenty of rest days to recuperate. When I first started reading about POTS and accepting that I have a chronic illness, I felt really defeated and sad that I would most likely never be "normal" again. Now though, I'm learning that first and foremost I am a human being, I am an NHS employee, an active volunteer with the British Red Cross, I attend church regularly. I am all of these things, I just have POTS. Chronic illness does not and will not be the only thing that defines me.
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