Welcome to my first ‘Daily Thoughts’ blog. I decided to split my blog in two because whilst writing about the past and how I was diagnosed, I realised I have a lot of thoughts in the present that I want to document. To be honest, it’s as much for me as anyone else. I have given myself 30 minutes to write something so here we go..
It’s been a wee while now since I wrote a long blog and continued my story. You may have seen a few things have happened since then…I spoke to Belfast Live…then Irish News and then spoke on BBC Radio Ulster on the John Toal show- you know, all regular stuff haha. The response I received was lovely and it has really encouraged me to keep going with my story and raise much needed awareness. A big thank you to everyone who has read the articles and listened to me on the radio. If you happened to miss any of them, check out my links in my previous three blogsThe next section of the story is limbo basically. Even with all the dates written in front of me, it exhausts me to read through all the appointments going back and forth before being diagnosed and sure do yous really care anyway about my Neurology appointment in 2014? Probably not…
How fast a week flies! Last Saturday I had the pleasure of being a guest on the John Toal Show on BBC Radio Ulster.After the Irish news article was released I was contacted by the shows wonderful producer to come on the show…without really thinking I accepted and before I knew it I was at BBC reception getting my pass and brought in front of the coloured mics.
I promise I will return to my story but I thought I would do a quick blog on the story published in Irish News today.After the amazing response to my Belfast Live article ahead of World Narcolepsy day, I wanted to continue raising awareness of Narcolepsy. A few people had contacted me to say that they were going to get their symptoms checked out. To me, this meant everything that my article would have an impact, no matter how small. If it helped just one person get diagnosed earlier then it would make all the difference!
Writing this blog is weird now as 1) it’s no longer anonymous and 2) it was me that outed myself haha. I just thought I would pause my story for a wee second to chat about how it came about. After posting to my personal Facebook account accidentally from my blog Instagram I went through a variety of emotions. First of all I was confused like…hmm that says my name but my blog picture is there that’s not right…then this quickly progressed to panic..oh god what was it I wrote???. Of course, this post wasn’t just a picture of a tree or a coffee or a leaf or other thrilling posts that I put together , OH NO…it was when I had an absolute disaster of a week.
It’s been a wee wile since I posted a blog but as it’s the 1st of September I have that naggin feelin to organise my life and get things sorted.What happens next is a messy puzzle..trying to put together my medical record makes my head literally hurt and also drags up a lot of feelings of frustration and mourning of a life I could have lived. It’s not really my bag to throw a pity party though so I’m gonna keep this as informative as I can for anyone beginning the process of trying to get a diagnosis. That’s the purpose of my blog and why I am here writing about my experience. I know people say this all the time but if it only helps one person then it will all have been worth it. The path to diagnosis was long and hard but I will be forever proud of myself for trusting my gut and pushing my case forward. For anyone still going through the process – hang in there partner. Alright I know I’m not Woody from Toy Story but I honestly think there’s enough plot twists in here for a series of films!
After a wee tour of the West Coast (LA (and its gorgeous beaches) and Las Vegas) it was home time. I flew back to Evansville to get my return flight to Chicago O’Hare and then Dublin airport as my final destination. I stayed with a friend who took me out that night for one final night out in Evansville. I was sad to leave the people that had become my family for the last year. It was so weird because I was conscious of the fact that everything that happened in that year and the people I met were only known to me. It was like a little alternative universe.
If you are still reading from my first blog post – thanks!! If you are a new reader then welcome!
It has been a wee while now since my last blog post… I’m not sure if any of you can relate but when you have a chronic condition you find yourself readjusting all the time. I was in a wee bubble there where work was busy but I was still winding down at the appropriate time and remembering to drink enough water and take my meds and do yoga and all that nice stuff. Then it got a wee bit busier and sure I was starting to forget the water and not do yoga and that is the EXACT TIME you should be doing these things! It’s just a wee reminder to me that I always need to make sure I am making time to keep myself on the wagon! You are no use to anyone anyway if you are bringing out the worst of your condition by neglecting the things that keep it under control. Anyway on to the main bit…(can you tell I’m easily distracted and go off on tangents..)
So the sleepy story continues – thanks to anyone who took the time to read my first post!My old history teacher used to start her lessons with only a whiteboard marker in hand and ask ‘what year were we on?’ someone would chime in ‘1914 miss’ ‘ah yes…this was the year that marked the beginning of the first world war..’ and she would rhyme off everything that happened that year for the lesson (absolute lady and genius, I owe my A-Level to her!) So I suppose in the same fashion…we left off at the secondary school era…
My earliest memory is of Christmas Day, I am awakened by my older sister who informs me that it is 1pm, Santa has been and it’s DEFINITELY time to get up. I think I was about 3 or 4 years old at the time. My other siblings (five of them) have been up since dawn, my brother has claimed the tv (the fecker) and has probably had a good poke at my Santa presents too. I was gonna bracket some more jibes about him at this age but it was too long so here it is: NOTHING was sacred with that boy, no I will never forgive him for eating my Easter eggs circa 1998 because I was sick. I had a special SPICE GIRLS egg, that kinda stuff wasn’t your standard old Cadburys but down his gob it went and when I was better I had no Easter eggs left to eat the little shit.