Hello! I haven’t posted in a while for various reasons. Going on new medication, getting used to side effects and coming off said medication cold turkey was a rough time. I wasn’t myself and frankly I was horrified by both my physical and mental symptoms. I still don’t think I’m out of the woods yet…
Narcolepsy is: A Sleep disorderNeurologicalAutoimmuneGenetic Causes of Narcolepsy It is an autoimmune condition in that an immune response generated antibodies due to a threat in…
How to begin this blog… this is probably the most horrific and equallu hilarious one of the lot. Warning – you probably shouldn’t read this if you are eating. I thought about editing out some of this but honestly, that’s what happened and everyone has bodies and functions, that’s all I’m saying haha. I have split it into parts as there are many twists and turns in this tale.
It’s been over a month now since I wrote a post like this. I have been battling to stay awake long enough to concentrate and write a blog for a long time now but I am glad to be back in the land of my rambles.
I sometimes wonder to myself why I bother to torture myself by talking about all of this. There are so many painful memories that also conjure up those feelings again. Feeling lost, feeling a failure, feeling embarrassed. I don’t know why or where this will lead by sharing this but I do know that by shaking out all the skeletons in my closet, somewhere along the line I will start moving on from this. I will always remember how I felt but I now feel like I am taking a corner. I am looking forward more than I am looking back and that has to be a good thing. I am making peace with the past – one ramble at a time.
Week one million (or so it feels like) of lockdown approaches. I feel like everyone is starting to get super fed up. We have all done the Joe Wicks, made the iced coffees, danced to Tik Tok dances, cleared out our drawers and done more online shopping than our finances are ok with. What’s next?I have found that I am returning to my old ways more and more – but this aint no bad thing! One example is that I bought a football. I don’t know what came over me I haven’t played with a football in years! As a child, I loved nothing more than going outside and kicking a football around. I was so happy when it arrived and once I got it blown up I was straight outside with my new purchase.
I’m trying to keep this blog writing thing up but honestly being consistently exhausted makes it so physically hard sometimes – bear with me! I do my best to be positive but some days I just get so frustrated. I am a person who wants to do a lot of things trapped in a body that wants to sleep 24/7.I thought long and hard about what way to present this next part. I wasn’t sure whether to tell the story as it was or to jazz it up a bit with a few jokes in there. In the end, I decided to tell it exactly as it was. In this current climate, there will be a number of people now feeling how I felt then. All I can say is that it will get better, you will survive this and come out stronger. Yes it sounds cheesy, but if there is a next time that you hit such lows, you have a ladder in the form of coping mechanisms to be able to get out again. It also sort of gives you a superpower – your biggest fear has already been presented itself to you so next time you will be fearless. World Pandemic come at me – you needn’t think you are going to break my spirit.
I haven’t really been able to keep up with doing a blog per week as previously intended. I was listening to the Wild Expansion Podcast today and she was talking about how she sometimes gets caught up in wanting her podcasts to be perfect or that feeling of not being enough and I think that hits the nail on the head. I’m that hung up about thinking that my blog isn’t as good as other blogs and worrying over the topic that it get’s in the way of actually getting the thing done! What also motivated me to start writing was the fact that I had intended to do four blogs in March and only did two. It’s 1 April today so maybe this can count as three.
I have decided recently that escapism via living in the past, watching the Disney streaming service and reading books about other worlds is my best coping strategy. Along with some Yoga and listening to Pat Divilly because he has a soothing voice. Although this blog post was hard for me to revisit, it reminded me that I have been through a lot and came out the other end. We will all come out the other end of this crazy Pandemic better people and thankful for the little things in life, for they are the big things after all.
I himmed and haaed whether I should write this post or not but feck it – it needs to be said. The lives of vunerable people, the elderly and those with underlying health conditions as well as the general health of the population is completely being disregarded by people for their own selfish end. STAY AT HOME FOR THE LOVE OF GOD!I love a good analogy and the way people are responding to the recent crisis got me thinking. This pandemic is making people feel out of control, inconvenienced, bored, frightened, angry etc. For me though, I feel really calm….these emotions are what I already feel on a daily basis. I have absolutely zero time for people complaining because they have been told to stay at home. Here’s why..
I started writing this blog probably about 2-3months ago now. Each time I attempted to continue the story I would stop and be unable to actually type the facts. I think that’s human though, it’s natural to bury painful feelings deep down. I thought maybe I should leave some parts out. Maybe I need to make it funny. Annoyingly as Robert Frost wrote in his poem “Servant of Servants”:‘the best way out is always through’We left off at Autumn 2015 where I had repeated my CAP1 Management Accounting and passed. Now it was time for CAP2s. There was one ‘less’ exam, which was actually the combination of two of the previous topics of Management accounting and Finance into a new rotten module called Strategic Financial and Management Accounting. These exams were more complex than the first set, whilst the first set were the equivalent of an Accountancy degree, this year would be the same as a Masters, but working full time alongside it.
I feel like January lasted one million years but also can’t believe it’s the end of the January. Regardless, thank goodness it’s over – it really kicked my butt!My blog writing didn’t quite get off to a good start. I went fully into my shell under a blanket of extreme tiredness and endless episodes of Greys Anatomy. To be honest, I wasn’t sure if I was low key depressed or it was Greys Anatomy or it was the moon cycles or my god damn hormones but jeez it was a rough old month.
Happy New Year!! I can’t seem to write a blog post in one sitting these days so these were my thoughts on New Years eve:As the New Year approaches, it is a time of reflection on the year that is almost over and the memories attached to it. It was my 28th birthday yesterday and I found myself thinking about where I was at in my life and what I still wanted to achieve. This led to a lot of self-criticism about career, finances, ambitions…I noticed I was focusing on what I HADN’T done yet rather than what I had achieved to date. I found myself thinking that in childhood I thought I would be married by now, have bought a house by now and be further in my career by now. I was generally focusing on the should-haves rather than the progress I had made throughout the year.
I’m not sure how to transition into the next part of the story to be honest… it’s one of the parts of my life that’s super hard for me to revisit. Like that phrase ‘maybe you’ll look back one day and laugh’ definitely does not apply to this bit. There’s a good reason for the Irish way of coping which is lets just never ever talk about that again and shove it under the carpet. It’s because talking about things in your past is friggin hard. It’s also hard to tell the full story of what happened and keep the people involved anonymous. At the same time though, they know who they are haha.
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..)