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When setting my goals for the year I had set quite a high bar and my word for the year was ‘build’ i.e. build on the good habits that I formed in 2023. I should have put my word as ‘demolish’ instead, as to be honest that’s how 2024 has felt, uncomfortable and destructive. Whilst…
To the girl who was always told she was too much for asking for her basic needs to be met. Dismissed by people when she…
Happy Valentines Day! I had this blog sitting unfinished for months now so decided what day better to finish it than the day of love itself. If you are single and hate this day, this could be a good chuckle for you because even though you may be single, you are better alone than with any of the crazy cats I encountered in my time being recently single. So tuck in with some chocolates, put a boy hating playlist on (Maisie Peters/ O Rod) and enjoy my dating tales of woe.
Launch of the Mind Your Sleep Podcast
by mainadminOctober 16, 2023Leave a Commenton Launch of the Mind Your Sleep Podcast
The idea of starting a podcast was floated about 2 years ago now with a friend of mine and fellow person with Narcolepsy, Aoife Harte. Aside from both having Narcolepsy we found that we had a lot in common and a similar attitude towards our health condition. We spent a lot of time talking back and forth and decided that we wanted to get some information out there on Narcolepsy in a way that people might be able to access and relate to.
I am delighted to say that we have now launched it on Spotify and have recorded our first four episodes.
This blog has had the most edits of any blog I have ever written. It is a difficult topic to write about but mostly it just wouldn’t stop writing itself. Seriously. Online dating is the gift that keeps on giving. If I was the journalist in a Hallmark movie tasked to write about my dating experiences I would have a whole column by now. How to lose a guy in ten days? No problem to me.
It’s been a while since I wrote a blog now and I’m not sure why I couldn’t write one earlier. I suppose in terms of the timeline of the diary I didn’t really know how to format this section of life? Would anyone still want to read on or was I just going to be rambling about daily life Narcolepsy struggles that you have all heard before? It all changed when I read a book recently called ‘Everything I know about Love’ by Dolly Alderton and felt inspired to start writing again. I related so much to her book simply because I felt that our life circumstances lined up. Full of unfiltered uni stories, failed Tinder dates and all the feelings about the societal expectations on a young woman approaching 30 – it was the ideal thing for me to read. Her stories are not unique but that is where the magic lies – we have alllllll been there. I read it and felt like I was reading about my own life and to be honest, that’s the kind of reading I like now. I like to feel normal and that someone else has went through the same shit as I have. It’s not that I wish any of my experiences on anyone else, it’s just that I am now completely fascinated by the stories of other humans and shared experiences. It’s comforting to feel like I’m not alone or going crazy, that actually, to not have everything figured out is ok. It’s perfectly normal.
The recovery from surgery was a long one and I was off work for about 2-3 months. In that time I did a lot of reflecting on what had happened to me.
During my time off a family member was involved in an accident and before I knew it I was surrounded by the familiar sound of beeping hospital machines and a blurred sea of green fashioned as indoor décor. Instead of someone leaning over my bedside, I was leaning over theirs offering water to cope with the dryness induced by the oxygen mask.
I met up with my boss for lunch one day and I remember going over the events of the accident. Suddenly I couldn’t tell him when I was going to return to work. It was as if the hospital visit had retraumatised me. I explained that I wasn’t ready to return to work just yet – but instead of explaining that I thought I was a bit mentally injured, I said that my physical wound hadn’t yet healed.
I have found it hard to write recently. But I also don’t know how to start this part of the story so maybe a part of me has been putting it off. When I started writing this blog I thought that this was going to be a story of struggle but eventual triumph. I thought that I had life all figured out and that I was going to write a lovely ending tied up in a bow. I would have my ending of the Paradise video where the Elephant finds its tribe and loves life. What I have discovered, is that life is full of twists and turns. The goal is to be able to live a happy and fulfilled life along with the dips on the road and to recognise that they are just that, dips, and not permanent situations. I was doing really well with my Narcolepsy management but recently I have felt like I’m going backwards. I am still not over the fact that I can’t drive at the moment. It’s a helpless feeling, I know I will get there again but the path to doing so feels like Everest right now. I’m also hyper sensitive to the fact that I turn 30 this year. The feeling of expectation of where I ‘should’ be weighs heavy on my shoulders. Yes I should be grateful and comparison is the thief of joy etc etc. But all I feel is raw anger. Like I’m in a bad dream that I can’t get out of. I reflect on the years lost to sleep and I want to fill them with achievements instead. I did achieve, but not in the way I wanted.
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 but I will get there.
I was put on Venlafaxine in February, it’s an SNRI medication which in my case was prescribed to try and suppress my REM sleep. This was meant to help reduce my nightmares and I trialled it for 5 weeks. Unfortunately, it made me feel awful and I had to stop taking it. I had nausea during the day and my excessive daytime sleepiness was even worse. I was so disappointed. I felt like it was such a waste of time and that I was going backwards instead of forward. When my sleep consultant contacted me he also decided that my excessive daytime sleepiness was at a level that made it unsafe for me to drive. This was another blow and I’ll be honest, it took me a wee while to dig myself out of the dark hole it put me in. I’m still afraid that I might slip and fall back down there and I am slowly working towards managing the beast again. I had also completely lost my funny bone which discouraged me from writing because I couldn’t string a sentence together much less write a blog post or make it entertaining.
Narcolepsy is: A Sleep disorder Neurological Autoimmune Genetic Causes of Narcolepsy It is an autoimmune condition in that an immune response generated antibodies due to…
I will try and keep this a little entertaining and not too factual but post-op recovery just isn’t jazzy. It’s the shock of being in hospital and its frankly painful. So many people go through it every single day. Surgeons complete these surgeries every single day and it’s so regular for them but to me it was HUGE. It was such a shock to the system – literally. I will try and describe how I felt that day without traumatising or scaring anyone too much…
Self-doubt really cripples my progress in writing the remainder of this saga. How long should it be? Am I skipping over important parts? Or am I including too much info on uninteresting, normal events. I am reading a book by Margaret Atwood at the moment and it took being 200 pages in for me to be interested in it simply because absolutely everything is described. But at the same time I love it because she could write a novel about a leaf and make it sound interesting. So here goes nothing…
Previously on this average story telling blog….I was just told the news that I would be having my right ovary removed. But before we dive into my anatomy, let’s talk about my ward neighbours first (all names have been changed or omitted just incase this gets popular – unlikely but just incase haha).
This London story is so much longer than I originally intended. The more I write the more I seem to remember. It’s like the memories were stuffed in a brain wardrobe out of sight and now everything is spilling into my consciousness. I’m pretty sure that’s called ‘avoidance’ or numbing the emotions when things are simply too difficult for you to process so you just don’t.
A lot of things that I write here might not be remarkable in any way to other people, but via these blogs I hope to let go of the trauma I felt from all of this. Yes worse things happen in life but to me, this turned my life upside down and gave it a good shake. It made me view life differently and re-evaluate what I wanted out of it. This is my final piece to recovery and upon which I will close this chapter.
That first night on the ward was rough. During the day there were lots of staff on and it wasn’t too bad in terms of getting pain relief. The night was a whole different thing.
I awoke with the same searing pain that I had on that first night. Now..instead of pressing the nurse button, I would say I sat for a good hour and quietly wished it away. For one thing I was EXHAUSTED and I really needed sleep. You know like in the middle of the night when you need to pee – but this was worse. The pain continued to intensify and eventually I pressed the button. As I heard the bell echo around the nurse’s station I became aware at how silent the ward was. During the day, the nurses buzzed around the station, answering calls and attending to the growing mass of patients under their care. This time though, the bell wasn’t answered – the tinny sound hung in the air and then eventually stopped. I blinked. Ok – don’t panic – I’m sure there’s a reasonable explanation for this. They are probably with another patient. Maybe they are having a meeting. Wait no why would they be having a meeting in the middle of the night. I get frustrated as I try to remember who was on the ward that night but at my last OBs check I was half asleep – but how were you asleep getting your blood pressure done?? I’ve got Narcolepsy people…I can sleep through anything.
I have this thing where if something isn’t perfect I won’t do it. Perfectionists are often seen as highly motivated individuals, meticulous in their work, working to high standards and generally, it’s viewed as a good trait to have.
Mines is driving me crazy. It’s making me avoid everything at the minute, so much so that it’s actually delaying things.
Whilst yes its great to have the aspiration for everything to perfect, sometimes just getting the job 80% done is…I just paused this sentence to review the first sentence and it’s phrasing….i’m moving on with writing this but I’m still thinking ‘maybe that doesn’t sound quite right’ and now I’m thinking maybe I should just scrap this blog all together.
Not today sister.
I’m still trying to find consistency in the chaos that is Covid-19. I’ve had phases of super productivity and then panic phases of ‘oh-shit it’s still here’ and then back to chilling and then something else happens so I turn on the news again. One thing is for sure – watching the news is definitely the factor in determining how I feel about life. The less of it I watch the better (with the exception of Cosmo and the odd business related snippet on Linked In).
So where were we in this old tale of tiredness? Ah yes…the sight of blood in a London hotel room. No there wasn’t a murder, nor a knife fight, just a pasty blonde shortie bent over a toilet getting sweatier by the minute and a piercing pain in her side.
I reached for the hotel phone and attempted to call 999. No dice. It was making this weird beeping sound when I tried to dial out and wouldn’t work. A few attempts later I decided to press the hotel reception number. It wouldn’t work either.
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..)