1/18 Today is the beginning of #Dysautonomia awareness month, so I guess now would be a good time to explain why I live in a horizontal world... please don’t scroll past...have a little read

2/18 Many years ago I was bitten by a tick while living in America. It caused neurological damage after contracting #LymeDisease. leaving me with serious fatigue and many complications, which was later diagnosed as Myalgic Encephalomylitus #ME #CFS

3/18 For almost a decade, I managed my life around my condition, living a perfectly normal life to the outside world...but in October 2014 my ability to blend in crashed down on a epic scale.

4/18 I contracted a virus that wiped me. I couldn’t move. I assumed at the time I had the flu, so just rested, sweated, slept, hallucinated, and repeat. By day 10 I knew something wasn’t right, but due to being diagnosed as having M.E my doctor insisted it was post viral fatigue

5/18 If I tried to sit or stand, my body just went into shock. My pulse would sore, I’d get dizzy, eventually my eye sight would go and I’d collapse. I’d do a caterpillar manoeuvre to get from bed to toilet, peeing at the velocity of Niagara Falls to hurry so I didn’t pass out

6/18 6 months went by, and I was still being told it was just a worsening of my ME symptoms. I need to just rest and ride it out... meanwhile, I was running my business from my bed, telling clients and staff, it was just a blip.... I’ll be back soon! But I never got back...

7/18 I said goodbye to my business and my team in 2016 and focused on finding out why. I had periods of feeling better, and was even able to venture outside a few times in a tilted wheelchair...but still no answers

8/18 Cardiologists, Neurologists, Endocrinologist, Rhumatologists...and even a psychologist all kept assuring me nothing was wrong, and it was just severe fatigue from my #ME

That was until I stumbled upon a news article in 2017 about a young horizontal girl who had #POTS

9/18 Her symptoms where so similar, I just couldn’t stop reading the article. The words where a blurry mess from uncontrollable tears. I knew this must be the reason why I was sick.

Phone calls made, and consultations booked (again) to ask the question. Do I have #Dysautonomia

10/18 In 2018, I was transferred to University College London Hospital Autonomic init. For 8 days I underwent testing to establish why I couldn’t stand up. Tilt tables, constant BP monitoring, plunging hands in ice water while doing mathematical equations, sweat test and more!

11/18 As suspected, they confirmed I had Autonomic Dysfunction as well as adrenal failure known as Addison’s Disease. They also confirmed I had severe deconditioning due to prolonged bed rest, and my muscle had atrophied. That part has significantly worsened my condition

12/18 Dysautonomia refers to a disorder of autonomic nervous system (ANS) function that generally involves failure of the sympathetic or parasympathetic components of the ANS. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive...

13/18 The outlook for folk with dysautonomia depends on the particular diagnostic category. There’s actually 15 different types, but for me I have pure autonomic failure. The signals in my brain don’t respond correctly, so even turning in bed can trigger uncomfortable episodes

14/18 But my greatest challenge yet is to become vertical once more. What makes this so frustrating, is the unknown. My doctors just don’t know if I’ll get there, but re-conditioning my body to support my vascular system more is universally agreed to be priority. The last 6...

15/18 Months have been the toughest yet, both physically AND mentally...but I remain hopeful that this is not the end. There’s a certain sense of excitement....I yearn for simple pleasures. Baking a cake, grocery shopping, playing with my cat, and eating peas without choking!

16/18 It’s taken years of appeals to be granted funding to access the right specialist care to be rehabilitated back into a chair... and in June I was granted it, only to be told they’ve stopped admissions to the unit because of #COVID19 so admission is another 12-18months

17/18 Now I wait. Hoping and praying I don’t continue to deteriorate too much so rehab is unachievable. It’s taken me 6 years to get this far, so I won’t be giving up any time soon...

18/18 So that’s me. That’s why I’m lying down all the time. A little horizontal life, filled with many challenges, but faced with fierce humour and a whole lot of gratitude for the people who’ve stuck around to take this crazy ride with me...

#DiaryOfAHorizontalGirl