Emily

My name is Emily, I’m 33 years old and have been living with PoTs since I was approximately 15 years old.

It started when I was tidying my bedroom, I had friends coming round and we were going to a Sugababes concert (on a school night!). I suddenly started to feel dizzy trying to pick clothes up off the floor and making beds for the friends who were staying over. I put it down to doing too much and tried to get some rest before the concert. During the concert my Mum had to take me to one side to find a chair as standing up became too difficult, I felt heavy, spaced out and my vision went dark. 

As a result of this I had to take time off school. Each day I would wake up in the morning, go downstairs and then collapse, my dad would carry me back upstairs and I would then sleep until the afternoon!

At first the doctors said it was a growth spurt, followed by a diagnosis of low iron levels. No one was really sure what was wrong with me, so I ended up just trying to deal with the unknown. I eventually took a tilt table test at the age of 19 and was finally diagnosed with PoTS.

I have had several different medications throughout the years for PoTS, but it has only been in this past year, after paying to see a specialist in London, that I have really had some understanding.

I fell pregnant at the age of 31, and the pregnancy was very hard for me and my body. I had severe morning sickness and couldn’t keep anything down. It caused my PoTS symptoms to go completely haywire and I ended up on a drip in hospital with my community midwife really unsure how best to help.

The OB-GYN was not at all helpful, and even the NHS hospital ‘geriatric’ doctor that I was seeing (specialising in blood pressure), saw no foreseeable complications. 

When I started active labour I passed out! I was very quickly given my own room and a midwife to monitor me continuously. The anaesthetist was extremely unhappy that we had not been consulted prior to the birth to discuss options, as my low blood pressure was of big concern to him. By some miracle I was able to give birth without surgery, but I had doctors running in and out all throughout the early hours as baby, my heart rate and blood pressure kept alarming everyone.

My baby is one year old now, and I absolutely adore her, it is tough though! Not eating and sleeping properly plays havoc with my symptoms and it’s been different to how we thought things would be. My partner has done so much research to best help and provide support, I don’t know how I’d do this without him.

Having a chronic illness that not many people are aware of can be very frustrating. I have been so tired and frustrated over the last decade at having to advocate for myself. I also have anxiety and depression, and although there is talk about how PoTS can cause/have a relationship with these mental illnesses it is never really spoken about.

I was once told by the hospital doctor that I can’t die from PoTS, so what’s the issue?

The issue is, my symptoms fluctuate day to day, if I am sick they get worse, having something like a cold or the flu can become really serious for me as I’m unable to function and moving from the bed to the bathroom can use up all my energy. Even trying to plan life activities, the fun things, takes energy, effort and sometimes a massive effort to just turn up and be there, only to pay the cost later when I’m home. 

I am trying to be kinder to myself, and to educate friends and family on ways that they can help and support. I want my daughter to know that we have a support bubble, a village, not only for her but also for her Mum, and that is okay.  

PoTS is something that I have learned to live with, but to be honest I am still learning how to accept it gracefully.