A year living with Bells Palsy

Bell’s Palsy is a condition that causes temporary weakness or paralysis of the muscles of the face, forehead, eyelids and neck.  It can occur when the nerve that controls your facial muscles becomes inflamed, swollen or compressed. It usually only affects one side of the face at a time, causing it to droop or become stiff on the affected side. It begins suddenly and worsens over the following 48 hours.

There isn’t a definite cause but Bell’s Palsy has been linked with stress or the symptoms of Bell’s Palsy can develop one or two weeks after you have had ear infection.  Although the exact cause is unknown, medical researchers believe it’s most likely triggered by a viral infection.  In my case I believe it was probably caused by an ear infection.  I do suffer with ear infections and am careful when swimming so as not to get to much water in my ears.  A month before I developed Bell’s Palsy I flew out to Australia and had terrible earache during take off and landing which at the time was extremely painful and caused me bother for days after.

Symptoms of Bell’s Palsy include, drooling, difficulty eating and drinking, an inability to make facial expressions, such as smiling or frowning, facial weakness, dry eye and mouth, headaches and irritation of the eye on the affected side.

Currently, there is no known cure for Bell’s Palsy but it’s recommended to obtain medical treatment within the first 24 hours which can include corticosteroid drugs to reduce inflammation, antiviral or antibacterial medication, pain killers such as Ibuprofen and eye drops, all of which can help improve recovery.  Without medication recovery may take longer.

Recovery usually begins between 2 weeks and 6 months from the onset of the symptoms. Most people with Bell’s Palsy recover full facial strength and expression without any complications.

More severe cases of Bell’s Palsy may have complications such as Synkinesis where the facial nerves have become miswired during recovery.  Synkinesis is a condition in which moving one part of the face causes another to move involuntarily, eg:- your eye may close when you smile.

Bell’s Palsy is not hereditary but my mum had it when she was 18 years old.

This is my story

I am generally a well person and my only medical issue is that I have been treated for High Blood Pressure (Hypertension) for more than 30 years. I take regular medication to keep it under control, my blood pressure is stable most of the time with a few blips here and there.

18 months prior to having Bell’s Palsy I had been on a 6 week course to maintain a healthy eating style, I lost weight and noticed a huge improvement in my well being. I had more energy and felt physically and mentally the best I had been in a long time.

As you know Keith and I packed in our jobs at the end of October 2017 and after a months holiday in Australia headed off on the 8th December 2017 for an 18 month adventure of a lifetime in our motorhome Eugene.

On the 18th December 2017 we arrived in Morocco. We were apprehensive and excited at the same time to explore this mysterious country.

On the 20th December I was bothered by what I thought was a spot or pimple in my ear canal. My ear was really sore to touch inside and out and I kept asking Keith to look at my ear, but he couldn’t see anything.

On the 22nd December we spent a lovely day exploring the beautiful city of Essaouira.

We spent the evening at the local beach bar having a few drinks and watching the stars. During the evening the contact lens in my left eye became really uncomfortable, it felt dry or I thought I might have got sand in my eye. It became so uncomfortable that I had to take my contact lenses out for the remainder of the evening.

23rd December I was awake really early about 6am which is unusual for me.  As soon as I woke I immediately knew something was wrong. The left side of my face felt strange, I couldn’t feel my lips or make them work properly and I couldn’t sniff without my nose feeling really strange.  I got up and I looked in the mirror and could see that my face was droopy on the left side.  I started to get worried and I truly believed I was having or had had a Stroke during the night.

Once Keith was awake he tried his best to reassure me that I wasn’t having or I hadn’t had a Stroke, but he did agree something wasn’t right.

We had a frantic hour using Google Maps trying to locate the local hospital. Our mobile phones didn’t work so we couldn’t call a taxi and even if we could we can’t speak Arabic or French. We were wild camping and there wasn’t anyone around to ask for help. We decided to cycle to the hospital we didn’t want to take Eugene in case he caused more issues trying to find somewhere safe to park him.

I couldn’t believe that we were 2 weeks into an 18 month trip, probably in one of the worse countries in the world for this to happen and was I now sitting in a hospital in Morocco, the worse holiday nightmare for anyone.

Whilst I waited to see the doctor the left side of my face got worse. My eye lid wouldn’t close and if I tried my eye would just rolled up into my head. My speech was getting worse, I couldn’t pronounce my words properly struggling with too many f’s, th’s, b’s and p’s in words. I was dribbling from the corner of my mouth and I had become extremely tired.

I was in complete shock, I didn’t understand what was happening to me and was starting to feel really frightened. Not only did I not understand what was happening to me I couldn’t speak and didn’t understand the language. I was at a hospital that resembled a filthy building site and didn’t understand the process of getting to actually see the doctor.

After 4 very stressful hours waiting I was finally seen by a doctor, who incidentally didn’t speak English. So with lots of drawing and Google Translate he immediately reassured me I wasn’t or hadn’t had a Stroke. Keith and I cried with the sheer relief of being told that it wasn’t a stroke.

The Doctor appeared to be very casual about the diagnosis which was Rhinosinusitis (an inflammation of the sinuses and nasal cavity).  I was given a prescription of 5 items of medication that I needed to take. 1) a painkiller, 2) a nose cleaning spray, 3) ear drops, 4) antibiotics, and 5) steroids.  The doctor told me not to worry, it was only temporary and I would see an improvement within 12 days. I shouldn’t go cycling and I needed to protect my face and ears from the wind.

Returning back to Eugene both Keith and I were still in a state of shock and talked about what we’d been told and what were we going to do going forward.

Did I want to go home? At that very moment I didn’t think so. I was assured it wasn’t life threatening and it was (hopefully) temporary.  I hadn’t had a stroke and I would be back to normal in 12 days.  We had planned this trip and I was determined that I wasn’t going to go home yet, we would take it one day at a time.

Over the next 24 hours the symptoms became worse.  I tried to smile but I couldn’t, no matter how hard I tried to smile I just couldn’t do it without using my hand to push up my face.   48 hours later I’d spent a lot time sleeping, my face had completely dropped and now I couldn’t close my eye at all.

On Christmas day we Skyped our families and it was then that we broke the news to them.

I wear contact lenses and have glasses for reading when I’m not using my contact lenses.  Before we left for this trip I spent nearly £500 on contact lenses so I wouldn’t run out. My eye had become blurry and dry and incredibly uncomfortable, I couldn’t blink and my eye was now wide open 24/7.  Wearing my contact lenses was now out the question.

12 days passed with no improvement at all, I had taken all the medication and had a few extra Ibrufon.  I was starting to feel better in my self although still very tired.

So what do you do when you encounter something like this?

‘Google’ it of course!

All the research was pointing my condition being Bell’s Palsy.

I read as much as I could about the causes, treatment and prognosis. There is a massive amount of valuable information and support available on-line (and obviously a lot of nonsense out there too!).

I had lots of contact via our Guernsey Donkeys on Tour Facebook page when I posted what had happened to me.  It was lovely to have that support and understanding from people that have experienced the same physical and emotional feelings that I was having, I would get better, but it would take time.

One thing I found particularly helpful were the ‘Bell’s Palsy recovery diaries’ on YouTube. Seeing people encountering the same symptoms and difficulties and observing at what stage they improved, it was really beneficial and I found it encouraging.

I discovered that most people do make a full recovery, but it can take months or even years.  Once I got all my negative emotions out my system I knew that there was nothing to achieve by going home, there was nothing anyone could do to make me better, there is no magic pill, no quick fix I simply had to carry on and ride it out. I had to prepare myself knowing I could be living with Bell’s Palsy for months or even years!

When I say I had complete paralysis, I mean, nothing at all. No eye twitch, lip twitch, forehead wrinkle, nostril flare, etc. I would try with all my might to scrunch my face and one side would scrunch and the other side was completely smooth. Keith did mention just how smooth and youthful the left side of my face looked. Thanks, I also had a very altered sense of taste and since I had limited movement of my tongue and no movement on half of my mouth, eating and drinking became quite a difficult task. I literally would have to hold a dribble cloth up to my mouth every time I took a sip or ate something. I was constantly biting my lip when I ate making it very sore, I had to hold my mouth to enable me to eat properly.

My eye was becoming a real issue for me.

Washing my hair became a nightmare.  I would think that my eye was closed when in fact it had turned up into my head and not closed at all.  I’ve lost count the amount of times I’ve been thrashing about in the shower with shampoo in my eye making it worse.

We manged to buy some eye drops and eye gel to help keep my eye moist, because my eye was open 24/7 it had became really uncomfortable at night.  I needed for my eye to close or to tape it closed.  I couldn’t find a ‘pirate’ eye patch in Morocco so had to make do with sticky gauze patches, which wouldn’t stick to my face very well, so had to use surgical tape to tape the patch to my face, I looked really attractive like this lol.  My eye wouldn’t stay closed underneath and it was really uncomfortable with the surface of my eye sometimes making contact with the gauze.  I tired to tape my eye shut using a plaster, that turned out to be disaster because it bloody hurt when I tried to pull it off, so I didn’t do that again.

I persevered with the gauze and eventually got used to it although it wasn’t all plain sailing.  Because I had my eye taped up and wearing my reading glasses most of the time my perception of depth was all out of sink.  I found it difficult to see the difference  in the heights between the pavement and the road or any divots in the ground and I was walking like a bumbling idiot and took a few embarrassing tumbles.  I relied on Keith to help me take a simple walk down the road, I felt like I was 90 years old!

Initially I didn’t want to have my photo taken, but in the end used the photographs as a diary of my recovery and I look back to see the improvements usually in my smile.

Bell’s Palsy has temporarily changed my life there is no doubt about that. For 3 months I drank from a straw, drooled when I ate or the food would just fall out my mouth.  Lots of my clothes became stained from the amount of dribbling and I found it embarrassing eating out.

Suffering with Bell’s palsy I would say the worst thing is not being able to smile. Smiling is the first contact you have with another person and to know you look disfigured when you try and smile is very upsetting.  I lost my confidence, felt as ugly as I looked and I didn’t want to feel like this.

We left Morocco on the 3rd March 2018.

On the 7th March 2018 I saw a doctor in Gibraltar who confirmed that I did have Bell’s Palsy.  She was really good gave me a good examination.  My blood pressure was good and there was no damage to my eye.  She gave me a course of steroids in case there was any infection left and a prescription for ‘Artificial Tears’ and a ‘pirate’ eye patch lol. The Doctor confirmed what we had researched on the internet, there was no cure and it would put its self right in due course, I had to be patient and positive.

Most of the time I was feeling really well and positive if not a little impatient.  I had a few meltdowns where I felt really sorry for myself, I didn’t want to look like this any more, I didn’t want people staring at me or asking me to repeat what I’d said because they didn’t understand my speech.  One glass of too many of ‘mothers ruin’ (gin) was usually the cause of my self pity.

Every morning I woke up and tried to move my face, it was the first and last thing I thought of, it’s on my mind constantly.  I’d lost my smile and this was the biggest thing to come to terms with.  I looked like a sad cow on holiday.  I was unable to wear mascara, have you tried putting mascara on eye lashes that won’t blink, I just ended up poking myself in my eye making it feel even worse.

At the beginning of April 2018 I started to see small improvements.  Everyday I would try to blow out my cheeks, whistle, wink and using hot pads on my face, anything to try and get my muscles to start working again.

As the weeks and months went by my facial movements started improving. I stopped using the eye patch when we got to Greece at the beginning of May.  My eye was able to close and I was able to raise my eye brow, my taste buds were coming back, I was able to make a 1mm a smile and I was able to blow a kiss without my lips trying to kiss my ear and I had stopped dribbling, hooray.

23rd May 2018 – 152 days, 5 months 1 day from diagnosis

By the beginning of October I was able to keep a pair of contact lenses in for most of the day and by the end of October keep them in all day without them getting uncomfortable.  I think within the last year having the patch on my eye and wearing my reading glasses for most of the time my prescription has changed slightly, but its great to be able to see properly again.

I know recovery is such a long and tedious process and I continue to make progress, again very, very slowly but with the nerves growing at a mm rate each day I need to be patient, I think I have at least another 6 months to go.

I now have Synkinesis the nerve that once connected the muscle that goes across my cheek and pulls it up for a smile has attached itself to the muscle that extends into the neck and pulls down the mouth and chin.  I still can’t screw up my nose without the muscles in my neck pulling my mouth down. I still can’t make an ‘o’ with my mouth, my lip muscles still very tight, but stretching my mouth and lips help, although it doesn’t look very attractive when I’ve got my fingers I’m my mouth pulling at my lips and cheek lol.

Again using the internet I have researched and found a facial massage that I can do to encourage the nerves to go back where they belong.

Nearly one year on, I think that I’m about 90% healed if this is it, so be it. I leave the remaining 10% to what I personally can see in the mirror but I no longer stress out over.

I hope I’ve given you an insight into what its been like to live with Bell’s Palsy and given you a better understanding of exactly what it is.

Thanks for following along with us on our travels.

A la Perchoine

Shirena & Keith

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