Jo

I experienced a variety of symptoms, but the overall dominating feature was relentless fatigue, that made coping with everyday tasks an uphill battle. I struggled to walk a flight of stairs and found I couldn’t stand for reasonable amounts of time.

Diagnosis

Fortunately, I was diagnosed relatively quickly thanks to two wonderful GPs who listened to me and been able to locate a Specialist using the ‘Find a Specialist’ page, on the PoTS UK website.

Trying to manage my symptoms

With medical management, my symptoms began to stabilise, which I was incredibly grateful for. Ivabradine was prescribed to lower my heart rate and I was advised to increase my salt intake. I found compression stockings beneficial plus gently exercising to strengthen my leg muscles. However, the relentless fatigue continued.

Elements of stress and anxiety began to creep in, as I wondered how I was going to cope, particularly in regard to my role as a nurse and as a mother of two. I had small amounts of energy to use each day. I kept trying to push on but was in a vicious cycle of doing too much on good days, only to suffer with post exertional malaise afterwards, leading to further setbacks.

Looking for answers!

I was trying to look for the answer as to why I had developed Dysautonomia/ PoTS. I wondered if I had Lyme Disease, as I became unwell following a tick bite. This was despite the fact my initial blood test was negative for Lyme. I was using some of my limited energy researching and trying to discover, if in fact, I did have Lyme Disease. This was my main focus. I was going around in circles and my overall health and energy levels were not improving. I felt stuck in my current situation and that life was on hold.

One day I decided enough was enough. I was no longer going to use any more energy on trying to discover if I had Lyme Disease. Many months had now passed since the initial bite anyway.  Also looking back on the last few years, I think I had mild PoTS symptoms during my second pregnancy. I accepted what was my current situation and decided to focus on allowing my body to rest, instead of fighting the reality of what was occurring. I took time to reflect on what I had learnt from over 20 years of nursing. I had seen many times over that individuals who did well with chronic disease often had a positive mindset, paced themselves and made healthy lifestyle choices, alongside their medical treatment. This was what I needed to do. I began to coach myself with regard to this and slowly but surely, I began to improve. Lifestyle changes focused on diet, sleep, movement, relaxation and social connections. I felt empowered and capable again. There were minor setbacks along the way when I over did it or had a virus, but I learnt from each setback. Most importantly, the overall direction of travel was one of progression!

What I have learnt and moving on

Over the years, I have learnt so much more about energy management and I have trained as a Neuro linguistic programming (NLP) Coach. If I was to go back to 2017, I would do a much better job of coaching myself. 

I still have PoTS but it rarely affects me now. For the vast majority of the time, my symptoms are in remission. However, after suffering burnout nursing on the frontline during the covid pandemic, my PoTS symptoms became evident again. With the demands of my nursing role, I wasn’t taking care of myself.  I didn’t want my PoTS to start spiralling out of control, so I made the decision to hand in my notice. I decided this was finally my time to pursue my passion of starting my own business as a Fatigue and Wellbeing Coach. Nursing is still very important to me so after a period of rest and coaching, I have returned to my NHS Clinical Nurse Specialist role, on an ad-hoc basis, to complement my coaching work. I’m delighted to say I’m doing great and love coaching others with fatigue, a role that brings me great satisfaction and joy.

I wish everyone out there struggling the best of luck with improving symptoms and thank you to PoTS UK for being a great resource!

NB: My NHS Clinical Nurse Specialist Post is not in the field of Dysautonomia or PoTS.