Katie

Hi, I’m Katie and I’m 26 years old. In summer 2016, life looked pretty good. I’d survived 3 years of a nursing degree and had just started my first job in an Accident and Emergency department which I was loving. It was hard work and I was pretty exhausted but I figured it was worth it.

A month or so into my new job and I started to have episodes of ‘pre-syncope’, this was nothing new as I was used to feeling exhausted during uni when juggling placements, assignments and my social life and I’d even fainted a couple of times too. My GP at the time had told me this was normal for a ‘young woman of my age’.

I was getting used to working life and really excited at the opportunities ahead of me when out of the blue I had an episode of vomiting and diarrhoea. It really knocked me off my feet but I was relieved to have a week off, I thought I’d be able to shake off the persistent fatigue I’d been feeling for so long and get back to work with a bit more energy. Despite trying my hardest the next week I had to be sent home from shifts as I felt so faint and dizzy. The weeks passed and I still wasn’t able to walk or stand for long without feeling faint and near to passing out.

A diagnosis

I realised things were not going to get better on their own so I went to my GP for a sick note. I found it difficult to describe my symptoms to the doctor but had noticed that at times my heart felt like it was racing and I was constantly dizzy, nauseous and fatigued as well as being unable to walk very far or stand for long. The doctor ordered bloods and asked if I’d ever heard of something called PoTS (I hadn’t). All my bloods came back normal and I was advised I was probably recovering from a virus and experiencing post-viral fatigue.

Gradually, although I was trying my hardest to keep active and occupy myself, my symptoms were deteriorating to the point that I couldn’t manage to get out of bed every morning. This resulted in me making decision to get a wheelchair so I could leave the house to do activities I enjoyed such as going to gigs and cafes.

Day One – the start of things, not the end

I was referred to cardiology and finally diagnosed with PoTS and hypermobility in April 2017. My PoTS nurse said something that has always stuck with me. She said that today was ‘day one’. It was the start of things rather than the end, as now I had my diagnosis I could move on with my life.

Things really did move forward, I was put on Ivabradine, prescribed compression tights, made sure to drink lots of water every day, and (my favourite) increase my salt intake! Just over a year later I was well enough to be redeployed to work in HR, as an Admin Assistant.

Since then I continue to experience symptoms every day and although I have ups and downs, I find them easier to manage. I have also dislocated both my knees and experience partial dislocations regularly. Despite this, I am still trying to walk at every opportunity, as it is the main form of exercise that I can tolerate and is an activity I really enjoy. I’ve also been able to work full-time thanks to being able to work from home when I need to. The pandemic has meant that I currently work from home full time which suits me!

I feel I’ve come so far, both physically and mentally, since my diagnosis. I’m finally comfortable with the fact that my career has taken an alternative path, and whilst I’ll always think about how life could have been, that’s ok. Life is different, but in a good way. Seeing things from the perspective of someone with a chronic illness has certainly made me realise how lucky I am. Yes I have been on a huge learning curve, one which I am still learning from today, but I am thankful for every day, no matter what it brings.