Tag: Narcolepsy

Launch of the Mind Your Sleep Podcast

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.

narcolepsy-and-relationships-symptoms-sleep-disorder

Narcolepsy & Relationships

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.

Post Corporate Life – The Identity Crisis 

 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 Same But Different, Mental health image, 10 things I have learned about my mental health

The Same But Different 

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. 

A Life Update and Post-Op Journey Home

A Life Update & A Post Op Journey Home

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.

Recovery on the Gynae Ward

Recovering on the Gynae Ward Post Surgery 

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.

Picture of hospital ward

Awake & Asleep in HDU 

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…

hospital-picture-london

Waiting for Surgery & Ward Neighbours

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).

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.