Dozy Writes

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When I first started writing this blog, I had a debate about how much to share with everyone. I wasn’t sure what level of honesty I would be comfortable with putting out into the wider world. 

It’s a tricky balance – I want to encourage conversation but I also want to keep some personal details about me off the internet. 

So when I got ill three months ago I didn’t share much of it publicly. The main reason was my discomfort with the idea that anyone might feel sorry for me.

However, having experienced a fairly debilitating but non-threatening illness over the last three months, I have learned a few things that I wanted to share with you all.

So what’s been wrong with me?

You may recall that I mentioned previously that I had a trapped nerve in my neck, but what I didn’t share at the time was that I was also experiencing Bell’s Palsy, a temporary paralysis to one side of the face.

I went to bed one night with the beginnings of a trapped nerve and woke up the next morning to see that half of my face had dropped down. All muscle movement in the right side of my face had disappeared. I looked like a melted wax candle.  

Strangely, I wasn’t scared or upset because I knew immediately what it was. I’d known people who had experienced it and I knew it was temporary.

For the first ten days I was in a significant amount of pain down the whole right side of my face, not helped by the pain from the adjoining trapped nerve in my neck.

Thankfully, the pain passed and I was able to accept the situation and try to work with it.

Eating and drinking

What I hadn’t appreciated was just how much of an impact it would have on my ability to do the most basic of tasks in my day-to-day life.

Eating and drinking became difficult tasks as I discovered on the first day when I tried to eat a bread roll and my mouth wouldn’t open wide enough. I needed to manually open the affected side of my mouth with my fingers.

I soon realised that the type of cutlery I used made a difference. Deep spoons were almost inaccessible to me and for the first time in my life I found myself choosing something more shallow.

Drinking was also a real challenge. It was incredibly difficult to control the muscles in my mouth in order to avoid spilling as I sipped from a glass or mug.

If I had a pound for every time someone suggested that I use a straw, I would be a very rich woman. Actually, I’d only have about £20 but you get the point.

Despite the well meaning intentions of everyone who suggested it, a straw was impossible to use because I couldn’t make the required shape or sucking motion.

It wasn’t just straws that were impossible. One day, without thinking, I ordered an ice cream in a cone and was horrified by my inability to eat it without creating mess.

It turns out that you use the muscles around your mouth as well as your tongue when eating from a cone. I had to constantly wipe my mouth a napkin whilst trying not to focus on how much of a child I felt as the ice cream covered my face.

Even the simple act of chewing my food became more difficult. You don’t realise that you have a preferred side of the mouth to chew on until you are unable to use it.

If I mistakenly chewed food on the affected side of my mouth, I would find myself having to tilt my head and physically tip the food back to my ‘good side’ because I didn’t have the required muscle control to move it over.

The eye of the storm

As well as struggling to eat and drink, I had another challenge to deal with: the eye on the affected side of my face wouldn’t close.

I had always assumed that if the muscles didn’t work they would leave the eye closed but no, my eye remained open at all times for the first few days.

That meant no blinking and no way of closing it when I went to sleep.

I didn’t have an eye patch at the time and I had no way of getting one for the first few days. I tried taping my eye closed with surgical tape but that wasn’t strong enough to hold it shut and my eye just popped open underneath it.

When I slept, my eye would roll upwards meaning that my partner, A.P, could see the white of my eye which was quite disconcerting for him.  

But let’s not feel too sorry for A.P because he wasn’t the one who scraped his eyeball with a towel whilst drying his face. I forgot to manually close my eyelid and ended up experiencing one of the most unpleasant sensations I’ve ever felt. 

There was no respite from the constant dryness in my eye despite my persistent use of eye drops and gels.

To help with this, my friend ordered me a pack of eye patches. They came in a variety of vivid colours and there was even one with a leopard print design.

Naturally I wore them with style and coordinated them with my outfits but not even the chic designs could hide how  peculiar it was to temporarily lose sight in one eye. It made me appreciate my vision all the more.

On a positive note, I have been able to raise one eyebrow in an ironic fashion which was a skill I had never mastered. That said, it’s a skill which I will happily relinquish once full movement returns to my face. 

Telling people

Naturally, my first instinct when this happened was to hide away. Apart from the fact that I was feeling exhausted with it, I didn’t particularly want to deal with the questions about what had happened.

However, the way in which I live my life doesn’t really allow me to hide away and it’s not really in my nature so it wasn’t long before I saw one of my friends.

He had been forewarned and when I first saw him it was dark outside so he couldn’t see my face properly. As soon as I stepped into the light, he jumped back in surprise. 

We had a laugh at his reaction because, let’s be honest, people will naturally be surprised by such a marked difference in your appearance.

It became an interesting issue to navigate. Should I draw attention to it by saying to people, ‘Have you seen my face?’ so we could start the conversation or should I leave it unsaid? 

The problem was that not saying anything just made it awkward because everyone’s gaze was naturally drawn to the paralysis but nobody was talking about it.

I generally prefer to address something directly than pretend it hasn’t happened so I tended to mention it first and then proceeded to demonstrate my lack of movement by trying to screw up my face just in case they might think that I was lying.

This invoked a mixture of reactions, particularly as the resulting expression bore a remarkable resemblance to Pop-Eye.

Speech problems

Anyone who knows me will understand how much I like to chat so perhaps you can appreciate how difficult it was for me when my speech was significantly impacted by this illness.

During the early days, when I wanted to be understood, I had to press my finger into my cheek to stop it from flapping around wildly, thus helping me to enunciate more clearly. 

It was particularly difficult when I needed to pronounce the letters B and P. What medical professional had the genius idea of calling it Bell’s Palsy?

Apparently it was named after Sir Charles Bell, a Scottish surgeon who was the first to describe the condition but, regardless of the etymology, it’s a poor state of affairs when you can’t even say the name of the condition that is affecting you. 

Keep talking

I was surprised when A.P had a serious chat with me during the first couple of days.

‘I can’t believe I’m about to say this,’ he stated nervously, ‘but I think you need to keep talking to keep your muscles active.’

Never, in all the years I have been alive, has anyone asked me to keep talking.

Naturally I was quick to take him up on that offer and I continue to hold true to it even though my speech has practically returned to normal.

Learning to speak again

Fortunately, I started to regain tiny movements in my face within a couple of days of it happening. However, every time I regained movement, I had to adjust my speech accordingly.

The problem was that I had become used to speaking out of one side of my mouth and was continuing to do this despite the fact that I no longer needed to. As a result, I had to carefully focus on my speech, practising in front of a mirror to ensure that I was using all the muscles properly.

In addition, my occasional lisp became more constant as I struggled to pull my muscles in the correct way. This has improved dramatically and continues to do so but I can still hear a difference from how I used to speak. 

This is no laughing matter

It probably doesn’t come as a surprise when I tell you that I like to laugh. A lot.

So imagine my distress when I was unable to laugh for the first few days after this happened. Not because I was upset but because I was unable to make the right shape with my mouth and move my muscles in the way that I normally would to bring forth my laughter. 

I just couldn’t make my normal hearty sound that comes from deep within me. Instead I ended up with a pathetic half laugh that sounded a bit like Beavis and Butt-Head.

Not being able to laugh felt like some kind of torture and it was a relief when I regained some movement and found my laughter again.

Smile!

I am an incredibly animated person and I love to smile at people so it’s been challenging to accept how deeply intertwined my facial expressions are with my ability to communicate and connect with others.

A smile is my favoured shortcut for making a connection with someone but whenever I’ve tried to smile over the last while I have felt like some kind of grotesque character from a fairy tale with my twisted mouth and unblinking eye.

I was recently on the London Underground and watched as everybody steadfastly avoided smiling or looking at each other and I wanted to shout at them, ‘You have the ability to smile and you’re not using it!’

Obviously I didn’t do that because if I did, it would have made the news: STRANGE WOMAN BLASTS FELLOW PASSENGERS ON TUBE FOR NOT SMILING!

It’s funny isn’t it? A simple smile that you take for granted until you can’t do it.

Be careful what you wish for

I’ve always had a dimple in my right cheek. As a child I despised my dimple and spent many hours with my tongue poking my cheek outwards as if it was a dent in a car that I could pop back out.

It took me a few weeks to realise that my dimple had disappeared, presumably because it is controlled by the muscles in my cheek.

It was a reminder that the characteristics that we think of as flaws are often our defining features. They are the things that make our faces interesting and animated rather than bland and indistinguishable.

I felt a strange grief for something which had once caused me such distress but which I had come to love and accept. 

Have a little patience

When I first became ill I was aware that it could take anything from a few weeks to a year to recover. Naturally I hoped that my recovery would be at the lower end of the scale but I have accepted that it is likely to affect me for a while longer so I’ve had to learn to be patient – not always something that comes naturally to me.

I’ve had to change or delay some of my plans because travelling with this illness has proven to be more tiring and sometimes detrimental to my recovery.

My concentration levels have also been affected with the tiredness so I’ve realised that I have to do everything at a slower pace. As frustrating as that has been, I keep reminding myself of the tale of the Tortoise and the Hare where consistency will eventually win out.

Learning to accept help

I have always been a fiercely independent, and perhaps overly proud, person. This experience has made me realise how important it is to accept help. 

Being ill has meant that I have been unable to do things in the way that I planned and I have had to accept some assistance from close friends and loved ones as a result.

Not only is accepting help good for me – it helps to distil the fierce levels of pride – but it is also a gift to others. Your loved ones want to help you, consistently denying them the opportunity to do that is denying them a gift.

I have felt incredibly nurtured and cared for by my friends and loved ones. I was scheduled to do a lot of travelling over the last three months and I have had friends offer me to stay with them so I can reduce my travelling burden.

Some have offered me lifts so I don’t need to navigate public transport with my trusty suitcase that contains the sum of my life. Others have cooked for me and generally looked out for me in a way that I will forever be grateful for. 

What’s next

When I published my last post about the next chapter of Dozy Writes, I had hoped to forge on with my palm reading and working some more on Horatio’s story but the illness and travelling have taken their toll so I’ve had to delay those plans slightly as I continue to recover.

It’s been a really interesting experience over the last three months. Despite the fact that it has been difficult and exhausting, I have used it as an opportunity to learn more about myself. 

It’s odd to lose something in yourself that you thought you knew. 

My speech, my smile, and my ability to make facial expressions have all been affected, meaning that I have had to learn how to do things differently. It’s given me a different perspective on life which is a valuable experience.

I have a more settled three months ahead of me now so I am taking the time to get back into my writing, to work some more on my palm reading but most importantly to rest when I need to and allow myself the chance to recover fully.