You would not know my struggle if you met me
Hello! My name is Dolly, I am 26 years old and I live in London. I can remember as far back as being 16 years young when I first noticed I did not feel ‘right’. I tried to attend college and socialise with my friends but niggling away in my chest was something else, I could not quite put my finger on or figure out. I underwent multiple hospital appointments and tests to try and ‘catch’ something or ‘evidence’ as the medics called it, of a cardiac condition. 3 Hospitals and 2 trusts later, after years and years of tests, poking, prodding and fainting I was finally diagnosed with Dysautonomia an autonomic dysfunction.
It took me nearly 10 years to be diagnosed living everyday with symptoms that debilitated my life: Dizziness, severe palpitations, chest pain and discomfort, chronic fatigue, syncope, failure to regulate my temperature, swollen legs and ankles, nausea, heat intolerance, low blood pressure, high blood pressure, tachycardia and at times bradycardia, the inability to stand on some days and more. In between all of this I had gall stones and this resulted in my gallbladder being removed. Since having my gall bladder removed my relationship with food has drastically been reduced and the inability to eat anything due to vomiting and debilitating nausea.
Sadly after another 3 hospitals and 2 trusts, I was finally diagnosed with gastric dysmotility and reflux. My relationship with food is challenging, people would not know to look at me that I am struggling to keep up with my calorie intake or struggling just to keep my breakfast down because my body feels the need to eject everything consumed. Complan is my best friend, to be specific strawberry flavour with a huge handful of ice and a red stripy straw tends to go down a treat. Complan is my little carton of calorie goodness I get to enjoy instead of food. Surrounding my Dysautonomia, gastric dysmotiliy and reflux I have been diagnosed with PoTS (Postural orthostatic tachycardia syndrome) JHS (Joint hypermobility) PCOS (polycystic ovary syndrome) Endometriosis that I had surgery for only 12 months ago and lastly but not least GAD (Generalized anxiety disorder)
It is safe to say that life has been difficult. Just living has been difficult. Walking around with a beautifully fashioned smile but destructing from the inside out is pretty much how I am in a nutshell. You would not know my struggle if you met me, everyone who meets me expressed shock for how well I hold a façade and suffer in silence day in day out. What choice do we have? One day we remember being well and able, the next we suffer life changing debilitating conditions that change us, what should be do? Allow it the power to take us over? No, we adapt and make the most of what we have left of our bodies that is unaffected. Right?
I was told by all my medical professionals that I should not be working however I am a part time children’s nurse and I attend university as often as my body allows, some days that’s not many if I am honest.
My specialist tells me I have chosen the wrong career, it is too tough for someone with my conditions but that drives me more to achieve it. I will happily express that some days I feel the need to wrap myself up in my duvet like a little burrito and stay there all day and ignore the world but on days when I am ‘able’ I will spend my days giving 100% and trying to live as ‘normal’ life as everyone else. Everyone loves fruit, am I wrong? But when life gives you sour lemons when you asked for a beautiful box of strawberries, what do you do? Throw them back and demand something better? Or work with what you’ve been forced to have…. I turn those lemons into a lush cosmetics bath fizz. These beauties help me not only physically but mentally to relax and allow my body an hour or so to relax, recharge, rest and most importantly surround me with a mountain of bubbles suitable for a queen. My anxiety is on high alert everyday and for that 1 hour a day my anxiety is lessened all because of something so small. The lesson is to take the time out for the little things as they will make the biggest impact on your life.
Reading the stories on Suffering in Silence give me much needed strength and comfort to know that I am not the only one and I am certainly not alone in this big world. Comfort, help, a shoulder or an ear, people are out there who understand our struggles. I hope in some way shape or form my story has comforted you, brought a smile to your face or allowed you time to acknowledge you’re not alone, then I will live happily knowing I helped someone in someway. Every story has inspired my life and I hope they do for you too. Thank you so much for reading my story.
Follow Dolly on Instagram (@Dollie_Daydream) or on Twitter (@Mrs_Dollie)!