Health Update

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 a number of symptoms – particularly, feeling excessively tired and suddenly falling asleep during the day. At the start, I thought I was just working too hard. Instead of addressing my health, I tried to struggle on and let 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, I was diagnosed with Type 1 Narcolepsy, a condition which makes my immune system attack my 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 treatment can help suffers cope with symptoms, many find the condition debilitating and isolating.

I will be very surprised if you know about Narcolepsy, or even know anyone who suffers from it. It is a rare condition, affecting 1 person in 2,500 – this means 30,000 people in the UK suffer from Narcolepsy. To put this into perspective, I tried to find some high profile people who suffer from Narcolepsy and really struggled. The only celebrity I could find with a full diagnosis was Jinx Monsoon (winner of Ru Paul’s Drag Race Season 5).

Even if you have heard of Narcolepsy, the likelihood is you don’t know much about it, or, what you do know is 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.

Even though the condition is rare, and the likelihood of you or a loved one having Narcolepsy is quite small, lack of awareness can affect Narcolepsy suffers in so many ways, including:

1) Misdiagnosis or slow diagnosis. Very few doctors and medical professional know about Narcolepsy which means they don’t recognise the symptoms. This can lead to misdiagnosis, or a slow diagnosis which delays people getting the help they really need. It can take an average of 5 years from the onset of symptoms to diagnosis for most Narcolepsy suffers. If you’re a doctor, and you’re reading this please go look up Narcolepsy and Cataplexy!

2) Discrimination. Many people with Narcolepsy face discrimination, at school, university and in the workplace as many employers and institutions don’t understand the impact of the condition, labelling people as rude or lazy, or they don’t understand that the equality act 2010 protects people with Narcolepsy.

3) Difficulty accessing disability benefits. Many people with Narcolepsy find they cannot work or study because of their condition or because of a lack of awareness that causes them to lose their job or drop out of further education. Many people with disabilities struggle to get the DWP to understand their disability, and this is certainly the case for people with Narcolepsy as the condition is so poorly understood.

4) A lack of societal awareness causes Narcolepsy suffers to feel isolated. Many find it difficult to go out alone or socialise, in case their symptoms cause them to get into a dangerous situation, or in case their behaviour offends others. Many people don’t understand the symptoms, and can mistake Narcolepsy as rudeness or laziness or even find cataplexy attacks amusing. This can be very difficult to cope with, and many Narcolepsy sufferers end up with mental health issues as a result.

I have struggled with the majority of the above. None of the doctors at my GP surgery recognised my symptoms. It took me googling “why do I collapse when I laugh?” to discover that I might have Cataplexy, a symptom which is associated with Narcolepsy. I was very lucky that Narcolepsy UK were there to help me understand the condition and help me approach my doctor with the information I needed to get referred to a sleep disorder centre. After extensive tests last November, I was finally diagnosed in December 2020 – a process which could have taken much longer.

I am finding my condition incredibly debilitating. My symptoms are very severe and excessive sleepiness makes life difficult for me every day, as I feel constantly drowsy and I’m 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 incase I fall asleep a the wheel, have a bath unsupervised in case I fall asleep and drown, or 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, and it is so 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 4 to 5 collapses in a single day.

All of these things have 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. 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 am focusing on working through my back catalogue of recipes and providing a list of dairy free, egg free, refined sugar free, or low carb that are already on my blog. I am also going to re-work old recipes to make them more suitable for people with multiple intolerances. I am also hoping to get back I the kitchen, even if I have to be supervised until my condition is under control.

Many people with Narcolepsy don’t want to discuss or even admit to their condition because of negative experiences they’ve had and 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 change people’s perceptions of Narcolepsy.

2 thoughts on “Health Update

  1. Victoria Buzul says:

    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

    Like

    • antoniagentile says:

      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

      Like

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