Tag: Narcolepsy Diagnosis

Narcolepsy Awareness

2024 – The year of ‘demolish’

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 this is how I have felt, I know that the reason for my discomfort is because I was actually growing. Even though it really doesn’t feel like it at times. There have been a few things that have kept me feeling stuck…. I have some positives in here too but I want to paint a picture of why I was so absent on my blog and podcast.

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.

London – Part 3 – Staying in hospital away from home

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.

Current Thoughts

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.

My Narcolepsy Diagnosis and Treatment

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.