Heidi has had five episodes of Bell’s palsy, here she shares her story and tells how she celebrates every little improvement.
It all began when I was 24, late one Friday afternoon in October 2000. I work nights and had just woken up, with the sudden need to rush to the bathroom and be sick. My mum found me on the bathroom floor in a bit of a state and was shocked by the look of my face. The left side of my face had dropped and was swollen. The left eye was almost completely closed. Within twenty minutes I was at the doctors, scared not knowing what was going on. The doctor told me I had Bell’s palsy, gave me very little information and prescribed me a course of steroids. I was also referred to see a physiotherapist, which I had only one session with. I didn’t make a very good recovery.
Then in February 2013, it happened again. Three years later in January 2016, I had my third episode and in 2017, I had my fourth and fifth. The last three being not quite so severe as the first two.
Since the second episode I have had MRI’s, blood tests, an x-ray and seen various medical people at three different hospitals, as well as seeing my own doctor. Despite all the care, no definite reason has been found yet for the re-occurrences, but a lot of things have been ruled out. They are still looking for answers, although it seems to occur when I have a virus, e.g. a cold. But they believe something else is contributing alongside it. Recently I have seen a second neurologist, who has now narrowed it down to two possibilities, but can’t confirm which one until I have another episode and have blood tests done just after. It is frustrating not knowing why it keeps occurring, but I am now nearer to an answer.
In the beginning, back in 2000 I had hid away for the first few weeks. I didn’t want to see anyone, and I remember the first time I went up the town. A child asked her mum what was wrong with my face. I gradually accepted that that was how my face was going to be and went on as normal. Even then, I had begun to have issues with having my photo taken. I couldn’t explain to people how I felt and make them understand. I didn’t understand what was going on myself, as I had been given very little information, so how could I explain it to them and make them understand.
In 2013, I had my second episode. I was frightened, angry that it had happened again. But I knew I had to get on with things, the best I can. The care I had was completely different, and I was given a lot more information about the condition. More was known about Bell’s palsy by then.
The significant difference for me was in 2014, when I was referred to the wonderful facial palsy team at a hospital in Sussex. Things were explained to me in more detail about what was happening. Issues I had been having since my first episode were being solved. The best one was my watering eye. Since October 2000, my left eye had watered in bright sunshine, in cold weather, if a bit of eyeshadow got in to it, if a flash went off on a camera, when I put too much in my mouth and when I was tired. It would stream for hours and I couldn’t stop it. I had been paying a fortune for non-powder eyeshadow, just so I could wear some. In 2015, I had a little operation to seal my tear duct shut. I wasn’t worried about the operation itself, but the anaesthetic injection was another thing. I have a bit of a problem with needles, something which I’m having to overcome, as there’s been a few more needles since then. It was worth the stress of having that injection, as I can wear normal eyeshadow again and my eye doesn’t stream like it used to in the cold weather and so on.
My physiotherapist has been brilliant! The exercises are so different to the ones I was given in 2000. She has trained me to sense what is happening with my face, like when I get a pulsing feeling in my left cheek, just after an episode, it’s the muscles trying to work and what to do when they won’t stop at bedtime. To know what exercises to do for each stage of recovery, for each facial expression I have issues with. It’s like a package of exercises for my needs. So now after an episode occurs, I know what to do. In fact, its become like a routine.
Routine is part of how I have coped with the reoccurrences. Knowing what to do when it happens, knowing what to do when it first occurs and my magic box. What’s my magic box? It’s a storage box, which I keep a lot of the things I find helpful with my recovery at various stages. From a microwaveable wheat and flax seed eye bag for my dry eye, to a bag of Maltesers to cover up the taste of the steroids.
The biggest thing that has helped me the last two years is the support group at one of the hospitals I attend in Sussex. It is run by two physiotherapists on behalf of Facial Palsy UK. It’s good being around people that understand how I’m feeling. That it’s not just about how you look. That my face may look ok after I’ve worked on it after an episode, but there are other issues that you could be having, like chewing, pain, tightness, feeling tired and so on. It’s good to be able to share ideas about things that can help. Being able to talk to people who understand why I don’t want my photo taken and the problem it was causing with going to my brother’s wedding. I did go, and photos were taken, but only on my phone. A suggestion made to me by someone at the group.
I have support from family, friends and work colleagues. They know when to offer help and when to leave me to it, as my stubbornness to do things for myself kicks in. But they also know when I need a hug, a shoulder to cry on or a wake-up call. Some don’t understand why I’m struggling to eat certain food or why I get so tired. Even if I explain they still don’t get it. Trying to explain that I can’t go out very late too often because I get very tired is frustrating.
As I write this I am two months into recovery from the fifth episode. People are asking me how I’m feeling. Well the answer is not great. My face is recovering well visually, and the tightness isn’t too bad in my left cheek, but it does still tighten up on occasions to the point it feels like I have cramp. I am hoping in the next few days to be able to assess which exercises I need to add in, as the synkinesis has got worse again. But my mouth is still a little dry, my eye is still a bit drier than it was before the episode, and my taste buds are still playing up. Some nights I’m awake to the early hours of the morning, as I can feel the muscles in the left side trying to work and my relaxation exercises are just not working as quick as I would like. I will admit this episode has got me down. It was too near Christmas and affected my enjoyment of the festivities. I’m fed up with feeling tired all the time and not having enough time between episodes to fully recover. It’s frustrating.
I get asked how do I keep going. Because I must. I celebrate every small improvement. Well they might seem small to others, but to me they are big. I have been known to come out of the toilets at work, go up to colleagues and go “look, I can do this again”. It’s been when I could make a perfect O shape with my lips again and when my eyebrows raise evenly. Some people think I’ve lost the plot, others, know how much it means to me and are pleased for me. Celebrating those little bits of improvement, I can keep going until I reach my goal.
I do my best to stay positive and not to let it get me down. Yes, I do have days when I’ve had enough, and I’m fed up with doing my exercises. So, I have a duvet day, watching telly and maybe having a good cry. But the next day, I snap myself out of it and say to myself, “I can get through this, I’ve done it before”. If I ever feel like its not worth doing my physio exercises, I just get out the photos from my 40th birthday in 2016 and my brother’s wedding in September 2017, to see that its worth it. To look at my face in those photos, you wouldn’t know that I’ve had multiple episodes of Bell’s Palsy. I stick to my physio exercises, because I know they work and because I’m trying hard to avoid Botox, my needle phobia again. I know every time I have another episode that I can recover, I just have to be patient. It’s not a quick recovery. It took me two years of doing my physio exercises to get my face like it was for my 40th.
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: 04-02-2018 || Next review due: 04-02-2021