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
