Bell Tower Survival Guide

Bell Tower Survival Guide

Since I've had Bells Palsy twice, I thought I'd give you some sage advice while you are healing....

1. You are your own worst critic. 

People don't see you the way you see yourself. Be kinder to that face in the mirror. Give yourself a break and get lots of rest. (Yes, I know that's asking a lot but it's important for healing) Remember, you are allowed to cry and hide just for a bit. Then you need to pull up your big girl/boy pants and get on with life. It sucks. Facial paralysis really sucks. You'll survive though, believe me......you will go on.

2. Get some really good eye tape! 

More than likely, your eyelid is paralyzed open or does not blink fully. Your eye will tend to pop open at night while you are sleeping so it’s important to tape it shut. This will prevent infection from a dry eye. I have tried numerous types of tape. Very sticky tape will take the skin off your face every morning but weak tape will not last through the crocodile tears and the crying jags you will go through. I’ve posted a picture of the tape I have found most successful.  I’ve also found that an eye mask is helpful. Slit the eye mask open on one side and stuff it with a little cotton. This will create enough pressure to help the eye stay closed while you sleep.

Definitely USE THE EYE TAPE IN THE SHOWER! There is nothing worse than getting soap in your eye every time you wash your hair. (Okay, there are worse things, but you know what I mean.)

Love this particular foam tape! I picked it up at a local pharmacy. Sticky enough but not hurtful.

3. Know the difference between eye drops.

Most of us suffer from an eye that either doesn't blink or barely does. Your eye's can become irritated and dry. Especially when you are focused on reading or staring at a computer screen reading my blog. For this reason, it's important to have good eye drops. There are two types of drops; ones with preservatives and one without. You can use the preservative drops twice a day; more than that and you can develop crystallization in your tear ducts which can cause other issues. You can use the preservative free drops multiple times. They come in little blister vials. Personally, I liked Systane. Unfortunately, they are not cheap but you are worth it. Keep a few around so when you lose one (which I have plenty of times) you are good to go. Pat your eye instead of wiping; it'll keep you from stretching the skin. 

4. Time to break out the glasses.

If you have contacts, get glasses. Contact lenses just don't work well when you have Bells. Your eye dries out faster now and wearing contacts will just irritate them. So just suck it up and get glasses. Go for the librarian look ladies! Gentlemen; glasses make you look smart too!

5. Straws are your friend. 

Who knew the simple act of drinking out of a glass was so important. Bells paralysis can make drinking in public embarrassing. Stock up on straws! The thinner the better. Fatter ones are hard to navigate with paralyzed lips. Put them in your car, purse, pocket and be ready to whip one out even when wine/beer is served. I recycle mine and rinse them out at home. Worse than soap in the eye is drowning while drinking. It's hard to drink without the use of lips- be careful out there but enjoy a drink, you deserve it!  NOTE: unfortunately, eating soup can also be a problem. Your lips won’t form around the spoon. Take your time and be prepared with napkins.

6. Have patience the first 3 month’s but then get aggressive with treatment. 

If you don't see any improvement and your doctor isn't helping, step it up. Personally, I went to see an Otolaryngologist and that's the only doctor who knew and understood what I was going through and how to help me. Do not accept "There's nothing we can do." from your doctor. Find another one. Synkenisis (the “popeye” face bunching) can be relieved. There are doctor’s that specialize in facial re-animation. I hope for your sake it never gets to that point. But if it does, you have resources.

7. Smiling from the inside

Here’s the toughest one; not being able to smile. The simple act of showing emotion is stymied. For some of us, you cannot move your lips at all, for others, only one side rises. Psychologically, it’s probably the hardest part of having Bells Palsy and the most devastating. As you know through my blog, my son used to mimic my crooked face when he was a toddler, which threw me for a loop. For most of you, your smile will return, in time. For those who suffer severe nerve damage, you have options for reanimation. It’s a slow road to recovery either way. REMEMBER, you see your face every day. You don't notice the changes as much as someone who only see's you every week or so. And some may never realize you have a problem. I can only tell you that over time, you will recover or embrace a new normal and that life will go on.

8. Join a support group. 

If you feel yourself retreating into your bedroom for more than a few days, it's time to get help. No one talks about it but there is a deep psychological side to this disease (?), virus (?) whatever it is. I know it's hard to face the world. I'm with you. There are many support groups on Facebook or blogs like these. We are here for each other. Reach out and know you are not alone.

9. Hug yourself!

For me, it's a new normal. After this many years, my face will only do so much. For the majority of you, you will recover fully. Either way, love yourself and the skin you are in. We only go around once, you might as well do it laughing, loving and living!

What helps you get through the day? Please post in reply's.

Coming out of my Bell Tower after 15 years. I'm about 1/3 of the way down. (tall tower)

Your Bells Palsy Sister,

Mia