Happy New Year to all my lovely readers!
I know I haven’t updated my blog very much in the last year or so, but I know there are many of you still visiting my blog and making my recipes, so I thought I should update you about why I’ve been so quiet…
Over the last few years I’ve been really struggling with my health – particularly, feeling excessively tired and suddenly falling asleep during the day. Initially, I thought I was just working too hard and tried to struggle on, letting a bunch of things fall to the wayside – including this blog.
In 2019, my symptoms began to get worse. I started feeling weak when I experienced strong emotions, like joy, fear or surprise. It wasn’t until my emotions starting making me collapse that I realised something was really wrong. Shortly before Christmas 2020, I was diagnosed with Type 1 Narcolepsy (with Cataplexy).
Narcolepsy is a long term condition which makes the immune system attack the brain’s sleep regulator. This means I suffer from excessive daytime sleepiness, sleep attacks (suddenly falling asleep, often at inappropriate times), cataplexy (sudden loss of muscle control caused by experiencing strong emotions such as joy, fear or surprise) and a range of sleep related problems included fragmented sleep, vivid dreams, sleep paralysis and sleep related hallucinations. Narcolepsy is not curable, and although it’s a spectrum disease (this means that the severity of symptoms vary from person to person) many find the condition debilitating and isolating.
I will be very surprised if you know anything about Narcolepsy, or know anyone who suffers from it. It is a rare condition, affecting 1 person in 2,500 – this means about 30,000 people in the UK suffer from Narcolepsy. I tried to find some high profile people who suffer from Narcolepsy and really struggled. The only celebrity I could find with Narcolepsy is Jinx Monsoon (winner of Ru Paul’s Drag Race Season 5) – this really does put into perspective how rare Narcolepsy is.
Even if you have heard of Narcolepsy, the likelihood is you don’t know much about it, or, what you do know is likely incredibly inaccurate – this is not helped by unhelpful, inaccurate and sometime offensive portrayals of Narcoleptics in the media, film and TV. Until I was diagnosed, I had only heard of Narcolepsy through the film Moulin Rouge – some of you may recall the oh so “hilarious” Narcoleptic Argentinian who would go as stiff as a board for comic effect.
For me, the condition is incredibly debilitating. Excessive sleepiness makes life difficult every day as I constantly feel drowsy and I am always fighting the urge to sleep. I have sleep attacks that can last hours at a time, which means I’m not that productive and fall asleep half way through doing things. The drowsiness makes even simple tasks incredibly difficult. At the moment, I am not allowed to drive in case I fall asleep at the wheel, have a bath unsupervised in case I fall asleep and drown, or even cook unattended in case I burn myself – that last one doesn’t bode so well when you write a food blog!
Cataplexy is also a problem as it is easily triggered by so many things – a funny joke, animals I find cute, or a song I like – and it is completely out of my control. It’s not unusual for me to have mild cataplexy throughout the day, which leads to partial loss of muscle control or blurred eyesight, but I also suffer from major attacks which can result in up to 7 or 8 collapses in a single day.
Narcolepsy has stopped me from doing so many things and I have become incredibly cautious about going out by myself in case something happens. I have fallen asleep many times in unusual places, like the pub or the theatre, and I’m sure many people thought I was being rude, or, perhaps even drunk. I have also received abuse for sitting in the disabled seats on the tube, or for falling asleep and not giving my seat to someone else who they consider needs it more than I do because I don’t “look” disabled.
All this being said, I still consider myself to be very fortunate in many many ways. I am so lucky to have wonderful friends and family who have been really understanding and supportive. I also cannot even begin to explain how wonderful Paul (my partner) has been, and continues to be every day, especially as my condition has a big impact on him too.
So, where does this leave me and my blog?
Well, Narcolepsy is a very strange condition and can be quite difficult to treat. The treatment available is a mixture of medication and lifestyle adjustments and I am still learning what works for me, but so far I’ve noticed that reducing sugar and carbohydrates helps me to feel a little less sleepy.
My blog was initially a gluten free blog, but I have decided to open it up to include other intolerances and dietary requirements now that my own needs have changed. You’ll still find the same passion for good gluten free food, but you’ll also find more dairy free, egg free, refined sugar free and low carb recipes as well.
At the moment, I have decided to focus on working through my back catalogue of recipes and updating them to provide dairy free, egg free and refined sugar free options where possible. I am hoping to get back in the kitchen and developing new recipes once I start my medication and it becomes a bit easier to cook and bake by myself.
Many people with Narcolepsy don’t want to discuss or even admit to their condition because they are worried about how they will be perceived, or that their disability will become their identity. This hasn’t been easy to share, but I wanted to be honest about my absence and help, in a small way, to help raise some awareness of Narcolepsy.
You can find out more information about Narcolepsy through the charity Narcolepsy UK.
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2 thoughts on “Health Update”
I’m so sorry to hear about your difficult experience, you are correct in thinking that I have heard of narcolepsy but didn’t know exactly what it was. You have educated me. It is difficult to suffer from these rare conditions. I myself have a 50/50 chance of carrying a gene which would give me a very rare condition so I have a bit of understanding of where you are. I guess I just want to say (((hug))) and that I hope now you have a diagnosis, the treatment will work for you. xxx
Hello Victoria, Thank you for your kind message. It’s still going to be tough, but there is a chance of things better and that’s what I have to remind myself. Did you have the gene blood test to find that out? It’s useful information to have, but I hope you stay healthy! X