In 2006, I was skiing in the alps having a wonderful time, but after a minor fall, something changed. Having been very active, enjoying a number of outdoor activities, my exercise tolerance declined over a number of months. One day I could do my normal bike ride, the following, struggled to walk up the road.  I felt like I was walking with a heavy rucksack on, wearing lead boots, everything just seemed so hard. I was good at being in denial, just pushed through, believing if I keep going the fatigue would resolve.

It became evident that my heart rate was responding out of proportion to physical and emotional stressors.  It took a few years, but eventually I was given a diagnosis of Postural Tachycardia Syndrome (PoTS), caused by a dysfunction of the autonomic nervous system. www.potsuk.org

What was happening in my life when symptoms started?

• I worked full time in the Emergency Department (ED). I did not see this as a stress, because I enjoyed it and worked with a great team of people, but by the nature of the job it is stressful – working shifts and being charge of a busy department.
• Travelling backward and forward to the alps to ski instruct
• I have a virus (common cold), nothing significant, but it lingered.
• Pushing myself physically. I spent the year before training for a long distance walk, then ski instructor training, I was determined to maintain my fitness for my next physical challenge.
• Being single and running my own home
• My dad died the year before after a battle with cancer.

I felt on high alert, like a hamster on a wheel, going round, getting faster and faster, who could not get off.

How I am now?

Many years on I would say that I am well.  I do not have any PoTS symptoms, though remain on medication for the time being.  I now partake in various outdoor activities including hill walking, climb, skiing and ski touring and biking.

By learning to do less, I can actually do more.

How did I get where I am today? What has made a difference

Learning to stop

I am a very driven person, and had to stop pushing myself.  I weaned myself of exercise and considered why I was so driven to push myself physically.  As well as enjoying the activities, its being with people and outside in nature which I value, so I sort other ways of achieving this without exercise.

I have learnt to listen to by body, and know when to push through symptoms, and when to stop.  Learning to do life at a slower pace and coming to a place of acceptance of where I was at.

No Fear

I chose not to be fearful of symptoms.  I would go for a walk or ride my bike (nothing too extreme) with my crazy heart rate, generally feeling rubbish, but that was ok,  I would give myself time to recover, then repeat, gentle pushing the boundaries.

Mindset

I chose not to put limits on myself in terms of how long I would do a particular activity for  (eg.“ I can only walk 1 mile, or stand for 5 mins ”) but be guided by what my body was telling me.  On a good day I would do more, but I learnt when it was time to do less.

I came out of support groups where there was a lot of negativity, and spent time with positive people who gave me energy.

Lifestyle

I stopped working in ED, to work in primary care, where the pace of working was different, and I got a seat! I started part time working, accepting less pay, but learnt to value the time it gave me.  My belief that “I must work full time” was challenged.  Sleep improved when I stopped working shifts, formed a more normal sleep/wake routine, limited evening activities.  I worked out that symptoms were worse in the morning, therefore delaying activities was beneficial.

Becoming outward focused

With the initial onset of symptoms, I spent time seeking answers, analysing symptoms, trying to understand what was going on physiologically.  Improvement came when I started directing my attention externally.

I acknowledged symptoms, but stopped giving them much attention.  I stopped talking about symptoms with friends, and directed conversation differently.

Set up a charity of PoTS to raise awareness and provide evidence based information.  This gave me a constructive outward focus to help others in a similar situation.

Careful with words

I would avoid using phrases such as “my PoTS” which implies I own it.  Instead I am Lorna, who happens to have PoTS, it is not my identity.

Avoiding words like “I can’t”, believing all things are possible, maybe not so far, or fast.

Gratitude

I celebrated achievements, however small, and focused on being thankful for what I did have, and could do.

Have fun

I made sure I had fun.  I started rock climbing, as it seem to involve more sitting about at the bottom of a rock face in the sun.  I also started Pilates, as it was a form of activity I could do without symptoms.

The development of PoTS as a result of childhood anxiety

As a young child I was VERY anxious, cried all the time and worried about anything and everything. I dreaded school, verbal instruction I could not take in, reading a book just did not happen and I struggled with writing.

Secondary school was no better.  I was laughed at when reading out aloud,  as I got the words muddled, told off for not writing neatly.  I constantly felt like a failure, my confidence in myself was very low, and felt no one liked me.    I was encouraged when I did was well school tests, as seem to have the ability to remember facts and regurgitate them.

I went to nursing school in 1991 which was hard, leaving home,  many emotions from the past came to the surface.  I failed one of my nursing assessments during this time, at which stage my tutor suggested I was assessed for Dyslexia, which identified auditory and visual short term memory issues in line with Dyslexia.

I read a book called “the gift of dyslexic” which completely changed my perspective.  Dyslexia of not a disability, it’s a gift,  a different learning style (I am a strong visual kinetic learner).  There is nothing wrong with me, or my brain.  The education system has made it into a disability.  I started to see what I was good at, rather than the failure I thought I was.

I wrote out statement of truth and affirmation, stuck them on my wall, and read them out every day.  I also went through a process of forgiving – the teachers who were unhelpful and my parents who did not identify what was going on and offer the support needed.

Gradually, in my early 20s, I grew in confidence, and my outlook changed, I became much happier with myself.