Lisa

However, at Christmas 2017 everything changed. I recall one evening sitting on the sofa with my husband, in the November of 2017, before it all imploded, and sobbing, saying ‘it can’t be normal to feel this tired all the time, what is wrong with me?’ He assured me I was working hard and it was the winter months and it would pass. 

The fatigue became more intense

Then December hit and the fatigue became more intense. I hoped once the Christmas holiday came, I would perk up. However, during that time, I started having episodes of pre-syncope that left me unable to move from the floor. My heart would race and I’d feel nausea, yet I couldn’t move. These became daily occurrences, leading to severe fatigue. Tiredness like I’d never know, even after two children and the sleepless nights, I had never experienced that feeling of my body being completely unable to move from sheer exhaustion. 

I was seen by my doctor who agreed something wasn’t right and sent me for different tests. Apart from being anaemic, my bloods came back normal and it was suggested that it was all a form of anxiety. Having battled with Generalised Anxiety Disorder for many years, and sought treatment, I was fully aware this was not my anxiety.

I was referred to a neurologist with the suspicion I had epilepsy. I was sent for scans and tests, and although it didn’t show clear epilepsy, they believed this is what I had and before prescribing any medication, they wanted to monitor. 

I had a big episode and was sent to hospital

At work, I had a big episode and was sent to the hospital where they decided to start me on epilepsy medication and referred me to a neurologist who specialised in this area. 

The pills didn’t stop the ‘episodes’ and they went on to exacerbate my already debilitating symptoms. 

My appointment eventually came to see another neurologist who felt this wasn’t epilepsy but a cardio issue. I therefore, stopped my medication and waited for a referral to see a cardiologist.

In the meantime, my symptoms got worse and I was getting high fevers as well as dizziness, racing heart rate, brain fog, blackouts and pre synocope daily. 

As a result, I was referred to the amyloidosis centre and had to give blood every two weeks for 6 months to rule out all sinister things that could be causing the fevers. After a long process, and seeing multiple doctors and various tests, including many ECG’s, I had a tilt table test.  This had to be stopped as my reaction was so severe. It was then I was diagnosed with PoTS. 

Relief in finally having a diagnosis

Believe it or not, there was such relief in finally having a diagnosis. With that, I felt I could start to move forward and find ways to help. 

However, since then and since being prescribed steroids it’s been a long process and journey. 

To adapt to my new life of fatigue and exhaustion, I left my teaching job in inner London, which I loved and took some time out. I changed my career and moved from secondary teaching to part-time primary teaching in a local school. 

The fatigue is still overwhelming on a regular basis, after my two days at work, Saturday is a write-off with me feeling utterly exhausted. I still cancel plans as I don’t feel up to it and all in all it can be tough.

BUT i’ve improved. I have altered my lifestyle, my diet and focused on my well-being as a priority. Yes, things have changed but I still wake up happy and grateful daily for everything I have.  Life can throw curveballs, and people won’t understand what it’s like and you will get the ‘you look ok’ comments. However, you will learn to let it go over your head. Your true friends and your family will be there and understand and that’s all that matters.

Good luck on your journey, finding a diagnosis, and adapting your life to suit your new normal.