The Two Orlas
Where do you begin to give your story, like so many of us it was years and years of bouncing from doctors offices trying to understand what was happening. I have always had sleep issues waking on and off all night.
What I thought passing out if I get a fright, laugh too much, am angry, scared, too hot etc. but bouncing back within a minute. I always had cut knees, bruises, bashes and bangs and was called by my family and friends a bit of a space cadet or away with the fairies or my flip side was razor sharp brain, top of my class and being an over achiever. The dichotomy always annoyed me. It was like there was two Orlas one sharp as a button and smart and the other away with the fairies, fainting, circling the skies and switched off.
In work I masked it with humor and because I could be very fast when the smart Orla was there I did okay, get feedback on we don’t understand the inconsistencies but you are very conscientious and get on so well with others an help them, but try and keep focused.
“It was like there was two Orlas one sharp as a button and smart and the other away with the fairies, fainting, circling the skies and switched off. ””
So at 36 after years of not recovering well from colds, flus, having asthma, chronic sinus, interrupted sleep, sleep paralysis, horrific dreams, absences, dislocated hips, knees and many falls and lots of angry conversations with my husband I had to admit something wasn’t right. He wanted answers I had lost faith in doctors, he wanted to know what was happening as I was falling asleep talking to him, in the car almost before we got to the end of the road, in the cinema almost as a film would start, after dinner at friends houses, doing housework, watching tv, while reading to my small kids. Basically anywhere, I dropped out of college as sitting listening and doing nothing was impossible.
So it came to a head, the doc sent me to a chest specialist, who after many tests said it wasn’t just respiratory then he sent me to Catherine Crowe and I started to get answers. I have type 2 narcolepsy and recently got another additional diagnosis of EDS hyper mobility which explains the dislocations and weak muscle piece of the jigsaw. Having an answer and a reason for issues and of course starting provigil and waking up has changed my life! I have researched the conditions worked with the docs and found a way of staying well while managing the triggers better. I ended up doing distance education and part time studies while working to get vets, diplomas, and family a degree and masters in work psychology studying what I love helped studying from home no having class schedules and switching on when I’m switched on worked.
““Getting diagnosed, getting the right meds, doing the things I can rather than being sad or anger at what I can’t and having a wonderful husband, kids and colleagues who also spot when things are wrong support me has changed my life.””
I am now a VP Learning consultant doing a global role for an international bank. I work from home 2 to 3 days a week which has been a life saver. I can control temperature, light and heat. I changed to a vegetarian diet and found I haven’t a much after food sleepiness. I go to the gym and do yoga, palates and the recumbent bikes to avoid falls or dislocations. Where an Apple Watch to remind me to stand, drink water, take breaks, and watch my pulse. Too high I go and lie down or too low get up and move. I use attention techniques from adhd sites like taking notes, using the watch and alarms to help control sleepiness. At night to avoid sleeping watching tv I knit, crochet etc to stay wake and it has been a miracle so much so I have made over 200 hats for cancer car, over 100 blankets and every baby I know is decked out. Getting diagnosed, getting the right meds, doing the things I can rather than being sad or anger at what I can’t and having a wonderful husband, kids and colleagues who also spot when things are wrong support me has changed my life. Am more than happy to share any tips, tools etc I have used or be a sounding board for people with work or study concerns. Sometimes on goods days I feel my conditions have been my superhero talents rather than my cross as it has made me compassionate and resilient and never say never.
Orla Nolan