I’ve had Bell’s Palsy twice in my life. The first time was in the fall of 2003 and the second time is in April of 2013. It is quite rare to get twice in one’s life which makes me a bit of an expert on how to cope with facial paralysis. Here are my tips:
1. A sense of humor – if you can’t laugh at yourself, who can. The absurdities are big and relatively funny at times. I laugh when I inadvertently drool, drop food out of my mouth, or make some crazy face.
2. Carry tissues and wet-wipes – to clean up after yourself. It’s bad enough to drool, worse to wipe it off with your shirt.
3. Carry re-wetting drops and salve for your eye. Dry eye hurts and can cause permanent damage.
4. Get acupuncture. It seems to help more than anything else that I’ve tried.
5. Let your friends and family know what’s going on. The similarities to stroke frightens people and they need reassurance that it’s just your face that’s paralyzed and not your cognitive abilities and it’s not fatal or even life-threatening.
6. Do not attempt to drink coffee while driving. This is unnecessarily dangerous and humiliating. Speaking of driving. Be careful. The sudden difficulties with eyesight can cause you to have an accident. I prefer to stick to routes that I know and stay away from long drives or heavy traffic. That’s probably good advice for me in general.
7. Go to the doctor. There’s not much that they can do, but it helps to feel like you are doing everything possible to get better.
8. Tape your eye shut at night to protect it. I use Refresh night-time ointment and my regular sleeping mask. My eyes are wired weird since the last time that I had Bell’s Palsy so taping my left eye shut makes it so that I can’t open my right eye. Yes, it’s that annoying at times.
9. Take the time and spend the money to find things that help. For example, if straws help then use them. If you need expensive sunglasses then get them, etc. For me, I still like to feel relatively pretty, so hair highlights and waterproof eye makeup are a must.
10. Join a support group and/or go to therapy. There is an active online group at Bell’s Palsy Support Forum. It’s located in the UK, but is the most active that I’ve found and is a great place to go to ask questions, read about others’ experiences and share your own.
11. Bell’s Palsy is a probably a virus either HSV-1 or Herpes Zoster, so it can make you tired. It is also tiring to cope with all of the paralyzing effects. De-stress and rest everyday. I take power naps right now. It helps. I also listen to soft music and pet my animals. Animals don’t seem to know the difference and are totally accepting.
12. Figure out how to still do the things that you love. If you need to tape your eye shut to read, then so be it. Or if you need to wear goggles to run, then wear goggles. I’m a firm believer in there’s always a way.
13. Remind yourself daily of what you are thankful for such as the limited paralysis vs. entire body. The ability to still see if compromised or still eat if sloppily.
14. Do your research so that you can help yourself, but then quit and stop dwelling on it. This is not easy. The fact that the medical community has limited answers is frustrating. In the ten years since the last time that I got it, the only real difference is antiviral medications.
15. Let it out. Even if temporary, it feels permanent while it is happening. Share with your friends and family or with a counselor. I tend to let it all hang out. When I was younger, I didn’t like to share with people. Now I do. It always surprises me how many people care about me.
16. Give people the evil eye if they stare, not really but it is fun to consider.