My Bells Palsy
Just gone through this illness recently, so thought I would write about it. I guess it's more of a practice for writing, and trying to get across what it's like having Bells Palsy.
Bell’s Palsy is a little known illness. It’s certainly something I’d never heard of until I contracted it. For those who don’t know what it is, I’ll explain it simply as facial paralysis on one side of the face.
For me, I first noticed it on a Tuesday morning at work. It seemed to find me at my lowest ebb. At the time I was feeling really down, depressed and overwhelmed by everything in my normal everyday life. Just before I went down to the shop floor, I practiced my best pretend smile in the mirror, and only one side of my face moved. It was a shock, and thought ‘why the hell did I only use one side of my face’, like I almost forgot to do it properly. I tried again, and I just couldn’t move the right side at all. The first thing that hit me was panic like a bucket of water. This strange thing came with no pain, or no prior warnings. No matter how hard I tried, I couldn’t move my mouth properly and quickly realised I couldn’t close my right eye either. Going through my head is a million and one things what this could be; a stroke? I’m too young for that, twenty three, but I have been under a lot of stress and it does occasionally happen. My arm and leg felt ok, but I was starting to shake under the panic, and that freaked me out more. A brain tumour? A brain haemorrhage? I had no idea what could cause my face not to work. The way I could only describe it at the time, was just an inability to move, an extreme weakness perhaps, just like trying to separate your fingers if they’ve been tightly super glued shut, but worse because the was no pressure when I tried to move. I just went down to work as normal, just trying to ignore it, my mind just going on auto pilot. After about an hour that is completely blank to me (this memory lapse nothing to do with Bells Palsy, just complete panic on my part) I went back to the staff room and asked my manager if I could call a doctor, my mind still not taking in what was going on.
I spoke to a nurse on the phone at the surgery, and he said he would get paramedics out to me, but I refused, not wanting to make a fuss. Half of me thought maybe I was being an idiot, maybe its psychological, maybe I slept funny and this side of my face has gone to sleep. It was only a five minute walk to the doctors anyway, and I got an appointment straight away. The doctor I saw did a few little checks, making me move my eyes, checking to see if I had feelings on the effected side and told me it could be Bells Palsy, which is the most common cause of facial paralysis. He then sent me on my way, and told me to come back if I didn’t get any better. His brief description of the illness left me feeling none the wiser.
When I got back to work, I had an apple for my lunch, and a drink of tea. This is when I realised how strange it was. I couldn’t drink more than a sip without dribbling like an old invalid of some kind, and eating was difficult to say the least. What else I found completely strange, is the taste sensation on my tongue, whilst eating the apple. It was like my tongue was split in half perfectly, the right side (the effected side) had no taste at all. I could feel the apple there, but no sweet, juicy acidity, it was like trying to taste using my finger tips. The left side had an irregular, bittery almost metallic like taste to it, a really unpleasant sensation, not to mention the inability to chew properly and apple juice running out the right side of my mouth. It is hard to convey the nervous tension you feel at this crossroads in no man’s land. There is no pain and no way to will your face to move more than a millimetre on the side that is affected. It just stops working. I spent the whole day in a daze and most of the night worrying myself. This frightening state of mind was made worse when I spoke to my mum about it, she told me about a condition effecting the nerves that is genetic in the family that I have that I never knew before now, and this could be a problem with that. I went straight back to the doctors the next day when there had been no improvement at all, if anything it was worse.
The more I thought about it, I had felt strange twitches on my right eye over the days running up to it, and a slight numbness and slightly waxy sort of feeling in my mouth, but, I put this down to stress and the fact I was smoking considerably more then I usually would and I was just getting over a cold. The strange twitching I had put down to stress.
Speaking with this new doctor, I felt a lot more comfortable about it. She explained to me exactly what it was. Bell’s Palsy is in the same family as the herpes virus, just like a cold sore, but it affects the root of the facial nerve which controls facial movement and taste, amongst other things too I’m sure. She also helped rest my mind that the genetic condition I have was unlikely to have caused this. She commented on how I couldn’t blink properly and promptly sent me to eye casualty and personally recommended a certain hospital to go to. I should also mention, that luckily I work at an opticians so due to the twitching of my eye, I asked the optician to look behind my eye, and also got my IOP (internal ocular pressures, basically the pressure of your eyeball which if too high or too low can indicate many different issues but is most commonly used for an indication of glaucoma). My eye was healthy although pressures were a bit high, and telling the doctor this, she defiantly recommended a trip to the hospital (as did the optician).
Now I would of thought the hospital would deal with the possible Bells Palsy as a priority, but all they did was check my eye again with a more accurate but unpleasant machine. Instead of three puffs of air as they do in your local opticians, at the hospital they first put drops in your eye, look in your eye, then touch your eye with sensor of some kind, which for me was nerve racking (and I pissed the doctor off by moving away several times). Although unpleasant, isn’t too bad, it feels very curved and like it cups your eye, and if I remember rightly it looked like a blue circle over my pupil for about two seconds. He said my pressures are fine and just recommended lacri-lube (which also annoyed me because I sell the stuff for a day job), which is an eye lubricant to help keep my eye moist and help prevent infection whilst I couldn’t blink. He wrote viscotears and lacrilube on the prescription, but I couldn’t afford both (even though it’s cheaper to actually buy the stuff then it is to use the prescription), and I know from work that they are both the same and either would do, the only difference is that viscotears is more ‘gel like’ so I went for that. That’s all they had to say, I was told it was up to my GP to get my face working again. At the time I was fairly annoyed and I felt personally that it wasn’t being taken seriously. I called my doctor back, and straight away she said she would put me on a course of anti-virals and steroids and she told me to come in and pick up the prescription and she also printed off some information about Bells Palsy for me, which was a pretty good read with loads of information.
What was worrying me then, was the recovery process. There is no exact time they can give you, no guarantees, only approximations and estimates. The figure I had was 75% start to make a recovery within 2 to 8 weeks, in the information and a similar figure on a (frankly useless) Bells Palsy website. I would never usually look anything to do with health up on the internet, because it always comes back worst case scenarios, ‘if it’s not Bells Palsy then it’s a tumour!’ ‘The cause of it could be HIV!’ and I have enough paranoia in my mind without that adding to it. But 75% recovery, in my eyes is crap odds. That’s 1 in 4 you won’t recover properly in two months. You’ve also got the fear that you may never recover if the facial nerve is too badly damaged, and the possible consequences of this could be ‘twitching of the mouth when you blink. Eye running when you eat (which is a strangest damn long term effect I would imagine. Also, you ear running, or something like that, which I don’t fully understand how it means by your ear running. These are all possibilities, a 1 in 4 chance, and at this point I’m still brand new to Bells Palsy, the word ‘palsy’ I only associated with Cerebral Palsy, and my face was getting worse now. Whereas before I could move it ever so slightly, there was no movement whatsoever now, not my eye or my mouth. Thankfully, when I close both eyes together, the effected eyelid closed half way after a few seconds, so sleeping wasn’t all that difficult. I found it difficult to use eye drops though. Having never used them before, and being as squeamish as a 10year old girl, the first time I put the drop in took an age. I thought it was quite hard to use because it is like a small tube of glue, I was expecting a dropper of some kind. But once the gel was in it was cooling, and nice to feel moisture in my eye. It took a while and some rubbing to work though, my eyelid was so weak there was no strength to spread the lubricant around my eye. I got over this by just massaging the eyelid a bit.
Spending time with BP, you see more and more how it affects you. It was the third day with it, and I was on the meds, which is four of the steroids for a ten day course which I was advised by the pharmacist to take each morning after food, and five anti-virals at regular intervals for a seven day course (I went for nine, twelve, three, six, and then nine o’clock again, each quarter around the clock, easy to remember.) Eating was becoming more and more difficult, partly due to the taste, but I love my food, and it was almost tiring to chew, so I was leaving most of a dinner I would scoff right down. Also talking was such an effort, words are difficult to pronounce, (especially in some cruel twist, the almost mockingly named illness which you suffer, B’s and P’s are so hard to say). My eye now was so dry it hurt, and was constantly blurry, it took several rubs and closing and opening for it to be clear, but still was never comfortable. My hearing started to become effected, the right side was so sensitive, an average noise that wouldn’t normally bother you, like someone laughing next to you, or a dog barking felt more like someone had fired a gun near my ear, that feeling of damage was always there. I wasn’t at work either, and had no idea if this was normal or if I was over reacting, even armed with the facts I had, I was still ignorant to how to deal with it, because nothing was definite and so unknown, I didn’t think work would understand. All this stuff was building up, and just adding to the normal stress anyone might go through, and was almost unbearable at this stage. It got no better either, trying to book another doctor’s appointment a few days later, having not left the house for a time, you realise in public, nobody knows about Bells Palsy. I couldn’t say my name over the phone, and the receptionist spoke to me like shit, because she thought I was mumbling or something. Awkward encounters are everywhere, bumping in to someone you sort of know (well enough to say hello to, not well enough to share a 30min conversation about Bells Palsy), and they are on my right side, I give a little smile, and obviously they couldn’t see it. People at the checkout wondering why you keep rubbing your face in strange ways and talking like a crippled pirate, girls thinking I’m winking at them. It was so awkward and embarrassing; I just wanted to get home.
I spent most of my time reading, and listening to unfortunately quiet music, trying to avoid the terrors of daytime TV, which I found the one plus side to being off work, the ability to do some reading that I never usually have time to do, a very small silver lining in another very dark cloud. Unfortunately not being able to write, which is what I wish I could do, my mind was to preoccupied from worry.
I saw the doctor again a week later, a different doctor to the one who helped me out. He reaffirmed my fears of this possibly not getting better, which I didn’t want to hear, but he signed me off for two weeks from work, and I got myself a self cert for the week I already had missed.
Still no improvements still complete paralysis, and you can see no light at the end of the tunnel, you feel completely alone with this. I also had started to experience more discomfort on the right side of my head, and behind my left ear. It wasn’t so much pain, but it felt like a sharp pressure, almost like someone was pressing the blunt side of a knife there, but I came off and on at irregular intervals. This too set the paranoia off, was it the nerve jumping into life again? Or was the nerve dyeing? I had no clue. I went on a second course of steroids, and started to notice some possible side effects from them. I had slight pains at the bottom of my back in the kidney, similar to the feeling you get the morning after having a long night of hard booze, also occasionally maybe some slight nausea. I felt too I had occasional mood swings, possibly down to the stress your under though. I felt although most of the time I was down, sometimes I would be really down, and very occasionally I’d feel really positive and happy, but at a time where it didn’t feel natural, and was totally aware that I felt unnaturally good during times of darkness. But I rode it out and tried to enjoy the elatedness, might as well make the most of a good thing.
Against my better judgment I did a little more research online, looking this time on youtube to see if there were any videos about it. I’m totally glad I looked online this time, people were, and had posted video diaries about living with Bells Palsy. Most people seemed to have had it for a long time, and although it felt like a punch in the gut, I somehow didn’t feel so as alone anymore. I saw videos of people from all different ages and backgrounds with it. It’s totally indiscriminative in who can get Bells Palsy. Middle aged middle class fathers, young guys, teenage girls, one girl who got it on her 20th birthday. Reading the comments helped too, people varying with symptoms and experience. People had it for months, some over a year, some only a few weeks. It’s good to see and hear the individual symptoms too that you may not read about in official medical writings, so it totally put my mind at rest.
Bell’s Palsy is a terrible condition, but in most cases you will get better, and you can deal with it. It’s also made me feel infinitely lucky because, after three and a half weeks I was 85% or so there. I can blink, I can move my mouth, there is weakness there, and the twitching is still regular, but the complete inability to move is all but gone. All I have now, is that my ear is a little worse, each time I yawn or hear a loud(ish) noise, for about five or six seconds. It feels like my ear has a bubble in it, and also like I’m on the underground and my ear’s about to pop, but it doesn’t. It’s very uncomfortable but I feel it’s going away as time goes on. I reckon I put my recovery down to taking the medication quickly after symptoms began, and down to rest.
If you’ve ever gone through Bells Palsy, or are going through it, I hope reading this can help you feel a little bit better about it. Staying positive helps and work totally supported me and were very understanding, as others have been as I’ve ventured out back into reality. Get your drugs from the doc, grab some good books, different soups, some good music, and a bottle of rum, and rest up (I didn’t drink on the anti-virals I should add).
This may seem like an overreaction to the condition, but it has changed my life. It could have been a number of things that caused the paralysis. It may have never gone away. It put the fear of god in me, and made me realise that all the stress I’ve been putting on myself prior to this was pointless. All the things you want to do but put off for whatever reasons should be done. No more excuses and no more ‘always busy doing something else attitudes’ will wash for me no more. Life is for living, and loosing the ability and confidence of doing simple things from smiling and blinking, to going out for food to the shops put it all in perspective.
Peace & Love & Cheers & Beers
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Last edited by RenardRoberts; 11-10-2010 at 11:25 AM..