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.
In a weird way I think I stopped engaging with my blog because I just couldn’t articulate what I was going through because my brain didn’t even want to acknowledge the difficulty never mind describe it. I was rejecting my current life. My Narcolepsy was much worse because I just wanted to sleep even more to escape. In a strange way I was resisting settling in my new apartment. My brain could not compute this new way of life and it wanted distraction instead. I didn’t know nor did I want to know how to build a new life. For anyone that’s done it, hats off to you. To turn your life upside down is difficult (Alexa! play ‘Landslide’ by Fleetwood Mac!). This song perfectly describes the fear of change, especially change in your romantic life that you previously feared more than anything in the world. It sounds corny but you really are braver than you think. You aren’t stuck and you aren’t hopeless and you aren’t bound to follow what society thinks you should do. Journaling and acknowledging that my feelings were valid was how the path forward suddenly seemed reachable. Your voice matters and what you want matters. There is compromise, as a given in most relationships, but never compromise to the point that you don’t recognise yourself anymore. If you are a fan of You – the scene where the girl says about the little voice in the back of your head. It’s SO true. Never ignore her. I ignored her so much I feared that she didn’t even exist anymore. That combined with the vunerability of having a chronic illness like Narcolepsy and the narrative of helplessness that it can create, means that sometimes our ability to make independent change can feel impossible. I often felt too beaten down and too weak to make changes that needed to be made. I was cruising in baseline misery that I couldn’t see a way out of. I was too sick, too tired and too hopeless to leave. Leaving meant huge change and huge change required physical and emotional energy that I didn’t have. I’m not sure when the switch flipped (somewhere between binge watching The Bold Type maybe?) and I just knew there was no way back, only forward and out.
All in all, 2021 was a difficult year for me and getting used to your own company again and living alone is a weird gig. For a start..Bridget Jones was on to something and was absolutely not the shitshow that the movies portray. As someone pointed out recently, she had her own flat in the middle of a posh part of London and two hot men fighting over her?! Sooooo why exactly were they depicting her as a disaster?? Now that I’m in my 30s and living alone I have a new respect for her. Will this weird diary/memoir blog have the same success as Bridget Jones? Probs not but thanks for reading anyway haha. Oh and also…you don’t see enough of the struggle to change lightbulbs and cut your own grass as an independent woman who just realised she carried internalised sexism within herself the entire time??? Taking out the bins is now one of the many gripes I have haha. Like the feminism entirely leaves my body during tasks that to be honest, men just buzz off anyway.
It’s been 3 years now since I have left corporate life and to be honest, I am more confused than ever about the direction I want to take. There is too much on social media about leaving the 9 to 5 life and living happily ever after. Where are my anxious girls that find a way to be anxious despite the circumstance??? No matter what I do, my brain will always create things for me to be anxious about. Not under huge corporate pressure anymore? Ok we will make her stress about the direction of her life, her aspirations and her 5 year plan. Alexa play ‘Work Bitch’ by Britney this girl can’t be relaxing herself. She should be operating like an absolute beast, hustling her way with online businesses and winning at life and if she isn’t like WHY? My brain is one big bully that I am determined to whip into shape.
I remain hopeful and positive about my future but leaving a clear cut career path isn’t easy. Especially when you spent years working towards it. How many of us in the chronically ill community are in this boat though? Sitting at a crossroads in their career waiting to take a new step forward but feeling stuck because of their illness? It’s not something the well think about. What if what you imagined your life to be spun a 360 tomorrow and placed you in a position you never thought you would be in? People who are suffering from Long Covid are finding themselves in this new chronically ill community that they never envisioned themselves in. But that is the core of illnesses like Narcolepsy, it’s rare to be born with them. It was something that gradually came on and for me there is a conflict between my previous well self and who I am now. Even when contacting the pharmacy for something as simple as collecting medication isn’t straight forward for me. I was recently told that only the elderly and vunerable would be allocated slots for delivering my medication and abruptly cut off before I could argue any further. Upon visiting the pharmacy (collecting the medication two weeks late because I couldn’t drive nor was I meant to get public transport) the same person looked at me and said the same thing. Despite all the recent awareness about invisible illness and the sunflower lanyards you see people wearing, she was actually looking at me and making a judgment that I wasn’t sick enough. I came away feeling infuriated. The chronically ill are in this weird limbo and I’m just fed up with people passing judgement when they haven’t a clue.
There are so many layers of annoyance and inconvenience with having a chronic illness. The judgement of uneducated people is one which I can only fix by raising awareness. Another is the complete uncertainty that it brings. You get weirdly used to pivoting your plans to meet your waxing and waning energy levels. Yesterday I wrote a list to get just 5 items from the shop, I returned with 3 from the list and then realised I forgot to write down another 2 items. I also lost my bag somehow on the walk to the shop. Very Katy Perry plastic bag in the wind vibes. If you didn’t laugh you would cry!! Brain fog and poor short-term memory will always challenge you no matter the organisation tool. You cannot plan for the lapse in concentration no matter how hard you try and that’s frustrating – especially if you are someone that thinks they can think their way out of a problem. The only thing left is acceptance and self-compassion. Last year, my word for the year was ‘Simplicity’ and I think this year it must be ‘Acceptance’. I have finally reached the final stage of grief in processing my diagnosis. I’m not angry anymore, I won’t ever be the same but I’m finding a way to shape my life around it. January has been a heavy month in terms of bad news locally and nationally and I just feel acutely aware of how precious life is. Life is devastatingly unfair for some and whilst we all have our struggles, the act of being able to breath in and out and have another day here is a great privilege that we often can’t see through the thick of daily life madness. We are all so busy and just trying to survive our days and weeks. Knowing this won’t stop me from complaining about the mundane or short-term problems in life ever again, but every so often news of a tragedy stops me in my tracks and I remember that whilst I think times can get really tough, I have another chance tomorrow to see if it gets a bit better. Another chance to be happy and spend time with people that I love. It’s reminded me to be more present in my life, something that I struggle with having such relentless anxiety and constantly living in the predicted future of what-ifs. I’m watching the new season of Afterlife at the minute and I just love the depth of Ricky Gervais’s writing. The emotional intelligence is off the charts and no matter what you think of him, I dare you not to feel touched by it, it’s just so beautifully written. This series is about his character accepting his wife Lisa’s death (soz if this is too much of a spoiler) but I felt oddly aligned with it in terms of my own journey with grief in my diagnosis. I was angry and then I was sad and recently I scared myself with my pure ambivalence for life, blocking everything out as a method of survival. There’s a quote from it that really resonated:
“I thought not caring was a superpower. I was wrong. Caring about stuff, that’s what really matters,” he says to Matt. “Kindness, and making other people feel good – that’s the real superpower and we’ve all got it.”
And so I began to write again, I began to engage with life and this blog. This all sounds very deep and reflective but I do have some good news…Recently, I was prescribed a new medication called Fluoxetine to suppress my REM sleep and to stop my crippling nightmares and hallucinations. This time last year I was prescribed Venlafaxine for the same reason and had a really bad time with it so I was understandably concerned about trying a new medication again. But, I am pleased to report that I haven’t had a nightmare now in almost two weeks. I cannot tell you how amazing this feels. I have always been scared to close my eyes and go to sleep and now I can close them, confident that I will have a peaceful (yet still very unrestful) sleep. As it’s an anti-depressant it has also reduced my anxiety significantly and for the first time in a long time I feel like I have some sort of control over the direction and course of my thoughts. This combined with my CBT sessions has me feeling like the old Christine might make a come back this year. My sense of humour is gradually returning so hopefully these blogs will get lighter too (probs not though, I’m a tortured soul clearly haha).
So what’s next for Season/decade 3 of my life?? Absolutely no idea but stay tuned because it’s bound to be entertaining in some way for the reader even if it’s a nightmare for me haha. The days are getting brighter and I’m also feeling a bit brighter and lighter too 😊
