When the darkness creeped in
Hi, I’m Lauren I am 17 and live in the UK, my story begins in March 2016, I went from being a completely healthy 15 year old to one who could barely stand in moments. On March 3rd after sprinting in PE, I suddenly felt really unwell. It was a feeling I couldn’t describe, I just felt ‘off’. My heart was pounding throughout my body and I felt as if I wasn’t there- a sort of weak feeling, a feeling I now experience daily. It is what a heart rate of 180bpm and being seconds away from passing out feels like.
I took trip after trip to A&E after this, after hours of lying down my heart rate would come down and they would send me home. I was told it was a virus, a response to caffeine, a response to overexerting myself in sport and even accused of taking drugs. A few months later I was diagnosed with POTS (postural tachycardia syndrome) and CFS/ME (chronic fatigue syndrome). After a concoction of medications I was finally getting to some normality.
During these times it is so important to always find something in every single day to make you smile, because there is ALWAYS something, some days it’s just a little harder to find. These small things are what get you through the tough times.
When sunrise became sunset again
After nearly a year I finally began to feel a little in control of my body I had felt so out of control for so long. I achieved my GCSE’s each taking twice the time as I kept needing to lie down. Amongst my results I achieved 4A*s of which I couldn’t be prouder, it felt like I was finally learning to live my new life and still achieve what I wanted to! Then in January 2017 I saw a new doctor and was diagnosed with hEDS this is when things started to hit home. With my POTS diagnosis we had expected me to grow out of it, but now with the genetic cause determined it meant POTS was lifelong too (although will hopefully improve with age). This was an example of a time when you have to look a little harder for those positives in every day, but believe me they are still always there! Also a reminder from me that it is okay to breakdown! Everyone needs to once in a while and I see it as a way to rebuild yourself even better than you were before.
I soon came to terms with this diagnosis and was getting on and enjoying my A levels at school. I was managing with lying down between lessons.
When one day my right leg started twitching and would give way if I tried to stand, this started happening more and more and soon became both legs violently kicking, one episode lasted 13 hours and landed me in HDU with a heart rate yo-yoing up to 210 and back down, where they suspected I was in SVT. This progressed and in September reached its climax with an ambulance, hospitalisation and 50 full blown seizures in a week taking around 6 people to hold me down, due to the violence of the kicking, punching and convulsing (completely out of my control). This was when things got the toughest they’ve been, I had to come out of school after a year of A levels, because it had gone too far and become too dangerous, none of my friends kept in contact and it felt like I was left behind.
During this hospital stay was also when a doctor told me I was faking my seizures and killing myself, but I try to remember more the doctors and nurses that held me down 50 times, and watched my monitors so closely all night (before a seizure my heart spikes to around 170 , so as this happened they would all run over to prevent me hurting myself too much). I remember the nurses that made me smile and told me jokes and riddles and laughed with me, they said I was the happiest patient they’d ever had on EAU . I remember the one doctor who researched through the night for me to get my diagnosis and medication, without him I would still be seizing constantly and I am so thankful (just in case you're interested, my seizure disorder is diagnosed as non-epileptic seizures related to POTS, under current investigation for adrenal seizures caused by a heart rate spike and large oversurge of adrenaline caused by a faulty autonomic system - sorry it's very wordy and medical haha).
It is an important thing to not let the negatives overrule the positives, because often you can remember one negative or rude comment and forget all the kindness and love of others! Which is so wrong; so always remember and be grateful for those who were kind and caring, remember not the uneducated comments or the undeserving friends who dropped you but the special ones who stuck around through everything, those are the ones you need to hold on to.
A quote I like is "those who mind don't matter, and those who matter don't mind" keep the special few close to your side and never take them for granted, and try not to let any judgemental comments off people who have no idea what you're going through affect you, they don't matter.
How to focus on the sunrise, it WILL come
When you take that first outside glimpse at my illness what is it? It’s often being seconds away from passing out, its heart rates of 200bpm being normal to you, its seizures, headaches, pure exhaustion, missing out and losing people you cared about.
But what is it really? It is SO much more than that! It is finding strength within yourself to keep fighting you didn’t know you had. It is finding angels in your life you didn’t know were there who stick around through good and bad, realising you have the most amazing parents who would do anything to take this away from you, it is appreciating everything you CAN do, not being sad for what you can’t and finding something or someone to make you smile in every single day.
Your illness gives you a kindness and empathy you couldn’t imagine before, an understanding of pain and frustration you couldn’t comprehend, and THAT is your superpower- that is where you can make a difference and help others. Without my illness I wouldn’t be writing this and I wouldn’t have my Instagram (@chronicallyreal_) to reach out and try make people feel less alone, and I am so grateful I have this opportunity to help people!
Remember some of the strongest people come from the hardest places of struggle; some of the most beautiful flowers grow from the darkest of places. You are the beautiful strong people, sometimes when you think you’re being buried you’re actually being planted – this is your opportunity and has made you into the person you are today! Made me into the person writing my story.
Never lose hope, for the darkest moments come just before sunrise, you have to wait this out because you never know when that next sunrise will come and brighten up your day.
Use your story to help others, be kind always and make someone smile for it will make you smile a thousand times more.
Thank you so much for taking the time to read my story, this is the start of raising awareness and hopefully helping one person feel stronger and less alone.
Lauren
