Tag: Chronic Illness

World Narcolepsy Day 2025 – Why am i still talking about Narcolepsy and raising awareness?

I checked the date of my first blog post on here and it was March 2019, that is actually crazy. So why after all these years am I still harping on about Narcolepsy and raising awareness?

People STILL don’t know what it is 

I still get the same comments that I did when I was first diagnosed back in 2017.  The ‘are you going to fall asleep now?’ or ‘i wish i could sleep on command’. The sole reason why i started my blog in the first place was to be able to educate and inform the public on our condition….it was also cheaper than anger management. So I decided to turn the frustration I would feel at ignorant comments into educating instead, in the hope that one day we wouldn’t get as many crazy comments. Sadly, our condition is still being misrepresented and even made fun of (I’m looking at you ‘The Boys’ on Prime) in the media and even though I get a bit of imposter syndrome at times, if i can be another voice to correct the narrative, even with a small following, I will do it.  If you don’t have Narcolepsy and think that you don’t need to pay attention to advocacy or awareness pieces, please reconsider.  Someone in your life could be suffering and need signposted and you could be that person.

Hospital Life in slow motion

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.

Perfectionist Ways – Please leave

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.

My momentous trip to LDN – Part 1

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.

Five reason’s why having a chronic condition has prepared you for this crisis

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..

Why my sleep was becoming a problem

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.

Abnormal Tiredness

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!

Coming to America

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..)

The Start of the Middle

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…