Selma’s Story

Selma was an exhausted mum-to-be, just days away from the arrival of twins, when Bell’s palsy changed her life forever.

Selma before Bell's palsy

Selma before Bell’s palsy

I first noticed something wasn’t quite right in February 2011 when I woke up one morning and immediately noticed a really loud ringing in my left ear. As I went about my day the ringing became less obvious but I felt tenderness in my left side, along the jawline. Being 36 weeks pregnant with twins I wasn’t leaving anything to chance and booked a doctor’s appointment for that afternoon. My GP said I had a slight build-up of wax but otherwise everything seemed fine. As the day went on I felt a bizarre sensation, almost like my face was numb, but not. A few hours later I was eating and realised I couldn’t close my mouth around a spoon, it was the oddest feeling. I jumped up to look in the mirror and wasn’t prepared for what stared back at me, the entire left side of my face had slumped, and I looked like I’d had a stroke. Of course I started to panic and my husband Andrew knew something was very wrong so we rushed straight to hospital.

After a long wait in the maternity ward I was examined by a team doing their rounds and eventually diagnosed with Bell’s palsy. I’d never heard of it so had no idea what was to come. I was told I’d return to normal ‘within a couple of weeks’, which absolutely mortified me. I was given a course of steroids to help reduce the inflammation. Up until that point I wasn’t in a state (once they’d established it wasn’t a stroke). When the doctor in charge asked me to say ‘baby hippopotamus’, we all had a good laugh. Your ability to pronounce ‘b’s’ and ‘p’s’ takes a drastic nosedive. But when it dawned on me that this wasn’t just a 24-hour thing, the shock started to sink in. My only thought was ‘I can’t give birth looking like THIS’. The anticipation when you’ve got a baby on the way is huge, people are excited and can’t wait to hear the good news, you count down the days, and you want it to be perfect. I never imagined I wouldn’t have that lovely first photo of me beaming with a baby in each arm. If I knew the truth at that point, that my face would never look the same again, I would have fallen into a deep depression. I’d just turned 29; I had my whole life ahead of me. In a way I’m grateful that I was told I’d be fine and back to business in a matter of weeks, it allowed me to focus on the matter in hand, which was to deliver safely and adjust to life with three children.

Selma when she was pregnant

Selma when she was pregnant

It was a stressful pregnancy, especially towards the end, and I was already rushing about with our eldest daughter, who at that time was only 18 months old. My husband Andrew is a tiler and of course, went into panic mode as soon as he heard the words ‘it’s twins’. He was working extremely hard and long hours and I was also working evenings. I’m a beauty therapist which can be quite physically demanding. Just after I found out I was pregnant I was persuaded to leave my current job by an acquaintance, a fellow beauty therapist who needed someone to take over her role at the salon she worked for. The owner was tough and had some extremely high expectations so I felt I had something to prove. My pregnancy wasn’t a secret and I began the job with the all the energy I could muster. I wouldn’t allow myself to feel tired and I would never give my boss any opportunity to accuse me of not pulling my weight. In hindsight I did some pretty silly things further on into my pregnancy, like carrying heavy foot spas full of water across the salon, and scrubbing wax off the floor on my hands and knees. I had moments where I’d feel very tired and be criticised for sitting at reception in between appointments, when I could have been cleaning. Then there was an incident when I made a mistake when issuing a gift voucher for a client, my boss hit the roof and really shouted at me which reduced me to tears. What I should have done at that moment was walk out and never look back, but I still had this urge to see it through until my maternity leave was due, I didn’t want to feel I’d failed. So I pushed on and began to feel unwell. My immunity was low and I was catching viruses left, right and centre, in particular two awful stomach bugs within weeks of each other. At this point I was 34 weeks pregnant and realised enough was enough. I went home to concentrate on my family and try to get ready for the birth, but two weeks later, the Bell’s palsy came.

Just after the twins were born

Just after the twins were born

The palsy hit just a matter of days before the twins arrived, so going out was becoming a rarer thing. Physically I was very uncomfortable and the Bell’s palsy was just that extra reason to not go out. The problem was, as soon as word got out, people started flocking to the house. From the moment I let that first person in, I just lost the ability to make eye contact. My confidence disappeared in an instant. I couldn’t drink without covering myself in it, I couldn’t open my mouth properly to eat, I couldn’t chew without constantly biting my cheek. My eye was bolt open and wouldn’t close unless I forced it to, at night I would wedge that side of my face into my pillow. Showering was tough, trying to wash your face and hair when your eye won’t close was interesting.

When the twins were a couple of months old, I tried going out for dinner to get a bit of normality but I was so self-conscious. If I could have walked around in a weird phantom mask I would have. The left corner of my mouth was extremely weak and my hand was constantly covering my mouth just in case food randomly fell out, I still do this three years on. I cover my mouth when I’m talking, just because I don’t want anyone to see it. When I try to give a big expression like a loud laugh, my hand immediately reaches up to cover my face. It ruins the moment of whatever you’re finding so funny, you feel as though you’ve lost a part of your soul and you’ll never be able to let go and feel relaxed again.

When the twins turned six months old I decided to slowly get back to work and pick up my private clients where I left off. It was a flexible way to get back into things but of course my facial palsy was a huge factor. I work in beauty, image is important. I felt embarrassed, like I had no place in that industry anymore. The main advantage was that my clients already knew me and understood what had happened. Had I gone back into a salon environment where the day is filled with lots of new faces I wouldn’t have had the confidence to do that. The thought of people wondering what’s happened, or why I look a bit odd would have been too much.

Selma with the twins

Selma with the twins

One strange coping mechanism I seem to have found was to convince myself that nothing was wrong when I was out and about food shopping or running errands. Talking to strangers has been okay, you get stopped a lot with twins but thankfully the main focus is on them so you just muddle through, talk about them and avoid eye contact. Going out for dinners is harder because you’re in a vulnerable way, eating and having to sit opposite people face on, engaging in conversation and so on, I feel much worse around people I know, rather than a stranger. But the absolute worst scenario is bumping into people who I haven’t seen in years. School friends or old work colleagues who don’t know what’s happened, then out of nowhere you’re caught off-guard in Bluewater and all you can think about is ‘they’re wondering why I look weird’.

Six months in I’d been back to my GP twice asking why I wasn’t getting better. I kept being told I would recover and that I’d just have to be patient, it was really disheartening. This was by far the loneliest time of this whole experience. I was told by one of the doctors that I might find internet research and forums helpful, but they were mostly filled with people’s experiences of short term palsy, the kind that rectifies after a few weeks. I knew I didn’t fit into this category, it had been too long, but there was nothing out there useful for people like me, stuck in limbo land. I heard about electro therapy treatment, acupuncture and even surgery, all private costly treatments. I went back to my GP who referred me to a physiotherapist at my local hospital, and for a Botox consultation at another hospital. At the physio appointment I was given some generic facial exercises that were not specific to my problem areas and I later found out were incorrect for me. This contributes to what Facial Palsy UK’s campaign is all about; advice like this can be detrimental to someone’s recovery.

After I had been suffering for nine months, I went back to my surgery once again and saw a third GP, who immediately said I should have seen a neurologist months ago. I was referred to another hospital and had checks on my entire left side, reflexes and an MRI scan, all of which came back fine. I’d had two sessions of Botox in the last couple of months which started improving my appearance but it was never explained to me that something called synkinesis was taking hold of my muscles. Synkinesis is when the brain sends signals to certain areas of the face to be active when they shouldn’t. For example, when I eat, laugh or yawn, my left eye instinctively closes when it shouldn’t. Movements like these affect the muscles and cause them to pull and tighten. The Botox controls this over-activity and prevents the muscles from tightening further.

The first family photo

The first family photo

I was told by my neurologist and the Botox specialist at the other hospital that my next step was surgery, which led them to refer me to a plastic surgeon who works as part of a multi-disciplinary team specialising in facial palsy. After fifteen months of distress I walked in genuinely believing that I was going to have surgery and this whole nightmare would finally be over, but I was shocked when I was told that I simply don’t qualify. The surgeon told me my facial nerve was regenerating, but in a very uncoordinated fashion, and that my best course of treatment would be a physio programme tailored just for me, combined with Botox injections every three months. I then met one of the other team members, a speech and language therapist who specialised in facial palsy. She gave me a really detailed insight into what I could achieve with the right rehabilitation, she was the first person in 18 months who sat me down with a diagram of the facial nerves and muscles and explained what had actually happened to me.

Selma now

Selma now

Being cared for under a specialist multidisciplinary team has completely changed my life. I have been given a very specific regime of stretches and massage to help with the synkinesis. It hasn’t been easy and I haven’t always adhered to it but I understand the consequences of not doing my part so I’ve been working harder recently. I was also referred to another therapist in the team for a course of cognitive behavioural therapy. It’s not just about the treatment you receive; the emotional support has been fantastic. I absolutely regard members of the team as friends now, they take time out of their own lives to run support groups for people with facial palsy, are on hand if you need a shoulder to cry on and have put me in touch with other new mums who are facing this condition. I have now met ladies in a similar situation to myself; we meet regularly and have become firm friends. We all have busy lives and our own network of friends and family, yet we have a bond together that no-one else could understand. And there are also lots of lovely ladies who live further away but know that I am just an email away. Showing support to people at every stage of their palsy means a lot to me, I feel like I’ve been through every emotion and can offer encouragement, or just a sympathetic ear. Meeting all these people, none of it would have happened without the team I am under now. If I had been left to get on with it alone, as I had for the first year, I’d be in a different place right now. There’d be no light at the end of the tunnel, no rehabilitation plan, and none of these fantastic relationships I’ve formed. It bothers me that there are people in other parts of the country that aren’t aware of these facilities; it’s a massive disservice to be without. The only thing I would change for new mums living further out and coping with this problem is that they’d have a facial palsy clinic near to them. But I don’t doubt this will be the case in the future. The only advice I could give a new mum with facial palsy is to contact the charity to find out about the support available, that and ’email me’.

I’m grateful that my eldest daughter wasn’t even two when this happened, she’d never have to witness such a drastic change in her mum. But at the same time I find that incredibly sad. My children will never know the ‘old me’, the one who wasn’t afraid to pull silly faces and wasn’t constantly self-conscious. I don’t want my children witnessing my down days, when I feel ugly and want to hide, it’s a terrible example. And I’m terrified this will happen to them. I worry that if my three daughters go on to have babies of their own this could happen to them, even though I know it can happen to anyone at any time. The thing I’m most sad about is my smile. How ironic that this is what I was known for, a ‘big, beaming, ear to ear grin’. My eyes would sparkle and you’d see every one of my teeth, and now it’s gone. The only way to explain it is that I look at that girl as the ‘old me’. Who I am now is a different person. She’s dead and this is who I am now. I’m still grieving the ‘old me’ in lots of ways.

Update

Selma’s story was featured in Pick me up! magazine in December 2014.

Selma spoke on national television about her Bell’s palsy experience during Facial Palsy Awareness Week in March 2015.

Selma spoke about her journey at Facial Palsy UK’s AGM in October 2016, below is a video of her speech.


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: 25-01-2021    ||    Next review due: 25-01-2025