Katey’s Story

Before Bell's palsy

Before Bell’s palsy

At the end of March 2018 I was working in a sawmill, with adults with special needs. It was a very noisy and dusty environment. I’d had a toothache for a few days and thought it might be an abscess. My left nostril also started to twitch and felt weird. I had the following day off because I’m also a carer for my mum who lives in York. I went into the bathroom at her house, looked in the mirror and smiled at myself, I thought my face looked lopsided. I’ve always had a lopsided grin but I tried to smile normally and something wasn’t right. While eating some cake with a coffee, I found I couldn’t taste on the left-hand side which seemed odd. I went back to the bathroom for another look, it was getting worse and I thought I must be having a stroke.

Bell's palsy struck

Bell’s palsy struck

I didn’t want to worry my mum as she’s in her eighties so I decided to get myself to A&E. By the time I got there I had also begun to feel unwell. I was still worrying I had had a stroke and the triage time flashed up as a four hours wait, I was worrying I might be dead if I have to wait all that time! A nurse spotted me though and took me straight to see a doctor. I was put through classic tests to rule out stroke and I was told they were sure it was Bell’s palsy. The doctor explained what Bell’s palsy was and prescribed me steroids. I was told to see my own GP as soon as possible. He did ask if I wanted a scan but said it was my choice, I declined as I had no other symptoms to point to anything else. I was told to dial 999 if anything changed when I got home. My husband by that time had arrived and was a bit alarmed.

Moisture chamber

With moisture chamber

My GP told me it was crucial to care for my eye and recommended I go and get some drops from the chemist. My GP also wanted me to be reviewed by the eye specialist in Darlington so I’d receive the correct advice for how to treat it. I was sleeping with a finger on my eye for about three nights and putting drops in and some ointment because it was so sore. I worked that out myself. I’d done lots of reading on the Internet and it’s where I found the most information about Bell’s palsy. I went to the eye specialist and they were happy that my eye was fine and gave me an eye shield. They saw me about three times to keep checking everything was okay, they didn’t tell me to tape the eye down, just said it was a possibility. I found it near impossible to tape the eye down with ointment in, so what I did was made a moisture chamber and an eye shield with cling film on it and taped it all down with that. The optician recommended it and showed me how to do that. It worked really well and in the early stages was brilliant and gave me some comfort. It also made it comfortable to walk around outdoors. Psychologically if you’ve got a big eye patch on people notice the eye patch and not the face, it’s easier to cope with the Bell’s palsy because you don’t get so many funny looks, people just glance at the eye patch.

I did a lot of sport before this happened (I was a triathlete) and I’m gradually getting back into it now. In the early stages I wore the eye patch a lot and was able to cycle and walk, but I couldn’t swim or run. I generally didn’t feel very well.

Everything was very noisy and I couldn’t cope with the noise at the pub, I gave up work at the sawmill because of the noise. It’s a minor thing, but it had a major impact on my life. It took away quite a lot of my confidence as well, the impact is massive, I’ve had some real low moments where I’ve not wanted to go out much, I’ve doubted myself and said to my husband this must be awful you having to look at me like this. He’s not bothered but it’s put about 10 years on me.

It’s actually healed a lot but the worst thing has been not blinking. I can’t tell you how awful it is not to be able to blink. My blinks aren’t level and I can’t smile on my left side. I’ve got a little bit of movement back in probably 70 percent of my face. I am a real grinner and psychologically not being able to smile is very damaging.

Things improving

Things improving

I asked my GP for physio and they said they didn’t know anybody and couldn’t refer me to the specialist hospital at Newcastle that I requested. In the end he gave me a referral to the local physio who was delightful but said quite honestly ‘I really don’t know what to do here, I’m going to have to contact a colleague’. I went back the next week and she’d got a few exercises to do, but to be honest the website at Facial Palsy UK was much better. So I politely told her I didn’t need to carry on and would just do my own thing.

I did have a few dark moments where I wondered if it was something other than Bell’s and then wondered if I should have had a scan.  But I think I probably feel too well and don’t have other symptoms.

The pain that came with my Bell’s only lasted about two months and it felt like an earache. Not quite bad enough to take painkillers for. The physical disability of not being able to make a seal with your mouth is a nightmare, you can often lose your food, and you’re dribbling all over the place. I think if you’re an under-confident type person it would be worse. I’ve been lucky with a wonderful husband and friends, and lots of support.

It’s not widely known so if you go to the hairdressers, or the dentist, or anywhere new, you find yourself explaining why your face is wonky. I’ve got synkinesis now so when I smile I tend to wink and when I eat or drink, or try and suck anything, my left eye closes completely. It looks like I’m grimacing or in agony.

Synkinesis took hold

Synkinesis took hold

The lady at the lovely support group at Newcastle said ‘its early days’, I said I’d had it for ages but she said ‘no you haven’t’. I think I’ve made about a 50% recovery and I’m sincerely hoping it could recover more. The blink coming back was lovely although I do have to use drops in both eyes now which I didn’t before.

I’ve looked on the internet until I’m blue in the face trying to find a reason I got it and I think perhaps it was the nerve that got inflamed, or herpes simplex. I think nerve re-growth is very, very slow. I’m 54 and at the older end of getting it. I was stressed because I was juggling a lot of things, I was full on at work as it was a new job and they were short-staffed, it was a physically and mentally challenging job. I was trying to train for a triathlon, look after my two ponies, and my mum in York. All my kids who were in their 20s had also come home to live. I think that at the time I was certainly very stressed, probably doing a lot more than I should have been doing so it could’ve maybe made me more vulnerable. I’ve been blessed with good health all of my life and there’s a few things that have happened over the last year which have made me feel my age, and look it.

I’ve been having treatment for sports related stuff so at the same place I tried Amatsu (a therapeutic bodywork approach working with the soft tissue and fascia). The guy that does it for me took some advice to see if he could work on my face and he was told it was safe to do so. He did a bit of work on me but I actually had to stop him because he caused pain and I thought it might make it worse.

I’ve been told a watched body never heals so I’ve tended to distract myself from it totally. I give it a little bit of massage, just naturally, both sides, because the muscles quite often pull and feel stretched so you want to just massage them and soften them. But as for specific exercises, I think I tend to feel that if the nerves are going to grow back, they’ll grow back naturally, so I don’t really think there’s much I can do apart from have surgery, which I wouldn’t really consider. If the blink hadn’t come back maybe I would. I would have done anything to get that back, the other stuff is aesthetic for me and I think I can cope with that.

My blink came back last October and that was the first thing that really significantly changed, not having sore eyes is so much better. There needs to be so much more awareness, especially among health professionals. They don’t understand the psychological impact of what’s happening to you.

Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.

Last reviewed: 07-03-2019    ||    Next review due: 07-03-2022