In June 2021 at age 19 I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS).  PoTS is a condition that occurs (typically after.a viral infection or other trauma) when the  autonomic nervous system becomes dysfunctional. The autonomic nervous system is in control of the majority of bodily functions we don’t usually have to think twice about such as heart rate, blood pressure, digestion, body temperature and one of the most notably the body’s fight or flight response.  

In patients with PoTS, when transitioning from sitting to standing the blood vessels don’t constrict as they should due to the faulty autonomic nervous system. This causes blood to pool in the legs, a decrease in blood pressure and increase in heart rate as the heart has to work much harder to supply sufficient amounts of blood/oxygen to the heart and brain. For me, this means that I have experienced heart rates of up to 210bpm, way over my max heart rate, simply because I have needed to stand up!

A lot of things have changed in my life since having PoTS.  I had to drop out of Uni, I haven’t been able to play netball or undertake cardio exercise for 11 months, I’ve had insane amounts of time off work and lost contact with so many of friends because I have been too sick to keep up with everything with multiple debilitating symptoms.

PoTS is a surprisingly common condition (especially within young women) but massively under researched with very little awareness within the medical profession. PoTS is currently described as ‘incurable’ with treatment options only focussing on symptom management rather than cure. 

Prior to PoTS I have always been more on the athletic side and for me the hardest part has been not being able to play the
sports and do the exercise I love.  Because of this, for the last 8 months I have been doing everything I can to build up my tolerance to exercise and have decided to set myself a challenge whilst also raising awareness for PoTS as a condition and to raise money for the charity PoTS UK who have been a great source of support to me and my family.

I will be taking part in the Parish walk in June 2022. This is something that terrifies me to even think about - I spent the majority of last summer in a wheelchair unable to stand up for more than 5
minutes at a time due to dizziness, low blood pressure and excessive heart rates to put into perspective the size of the challenge I’ve set myself. 

PoTS is unpredictable and every day looks completely different for me. Because of this I don’t want to put too much pressure on myself going into this and am just going to try and get as far as I
possibly can in - saying that I would absolutely love to get to Rushen Parish but we’ll see what happens on the day. Either way I will just be grateful to walk wherever I can without the use of the wheelchair!

I am very fortunate that my lovely friend Mel has very kindly offered ( after some gentle persuasion!! ) to take on this challenge with me also to raise awareness for PoTS.  Mel has never done the Parish before and is aiming to get to Rushen too which is 30km! I. With chronic illness good friends are hard to come by and I’m so grateful to her for being so supportive and understanding of the demands and unpredictability of my condition and definitely wouldn’t be able to do this without her by my side.

PoTS UK are a great charity in supporting people with PoTS. They have been so helpful for me and especially my family in understanding more about the condition and how the people around me can support
me, which can be hard when they don’t physically feel or see the symptoms I am experiencing. They also host many peer support groups for others with PoTS to connect and share experiences and make what can certainly be a very lonely experience that little bit easier.  As well as this,  PoTS UK consistently fund much needed research into PoTS and provide great support in getting patients
in touch with specialists who can assist in diagnosis and management of the condition. From experience this is one of the most important factors as without referral to a specialist I believe I would still be fighting for a diagnosis through my GP.

Anyone who knows me will understand how deeply this has
impacted my life so I am very  grateful for any support you are able to
give at all, and once again to the amazing Mel for doing this with me.