Bell’s Palsy – my scary, lonely journey.

Daisy1Maybe I should have known that something was wrong, because well, something just didn’t feel right. But that went with the territory, I thought. I was 37 weeks into a difficult pregnancy, and I was used to fighting symptoms- exhaustion, swollen ankles, back pain, shoulder pain and muscle tiredness. On this night, I was just not getting it together at all. I felt slightly uncoordinated, clumsy even, but I was tired, so I went to bed early. I had to work the next day, but happily this would be my last week of work before the baby came.

As my alarm clock buzzed, I groaned. Just two more days, then I’d throw it out the window. I did that crazy dance that pregnant women do to get out of bed – shuffling from side to side, eyeing the edge of the bed to so my legs would be lined up just right when I used the bed frame for leverage to get myself in a sitting position while hitting the floor firmly with my feet. My husband grunted his usual “Need help?”. I so did not. Every accomplishment of normal things was a milestone for me.  Getting out of bed by myself was me asserting the last few shreds of independence I had left.

I shuffled into the bathroom and found my toothbrush, added paste and started to brush my teeth. I relied on the minty freshness to advance the wake-up process, but it wasn’t happening. Not today. I tried to rinse my mouth out, and everything came pouring out the right side. That’s not supposed to happen, because my lips were closed. Or so I thought. This was confusing, but anything is possible when you’re 37 weeks pregnant. I switched the lights on and took stock of myself. I blinked, but only one eye blinked back at me in the mirror. Wriggled my eyebrows, smiled, puffed out my cheeks. Nothing. My right eye stared back at me, unblinking in the mirror. I pinched my cheeks, and then I got it. The right side of my face was totally dead. No movement, no response at all. This was serious, and I was not prepared for it. I was having a stroke, I thought. I screeched for my husband, and dissolved into tears on the edge of the tub.

I was blessed with a really good, patient friendly hospital system in my town. Even better, was that the ER was part of the hospital I would be giving birth, so they already had all my information. I was sped through to the ER doctor. After my exam, I was given the good news – it wasn’t a stroke. It was Bell’s Palsy. What’s that? A paralysis of the muscles in your face. Is it permanent? What causes it? How do you cure it? What does this mean??? He didn’t have all the answers, and certainly didn’t want to do anything without a consult with my OBGYN. Over the next couple of days, my medical appointments shifted between my OBGYN, family doctor and a neurologist at the university’s center for ageing. Yes, that last one was certainly not a confidence booster. In between that, I had to go to my job, tie up loose ends and make my maternity leave effective immediately. One of my associates reassured me that my condition was not permanent, she’d had it years ago with a 100% recovery rate, and that it was caused by the baby resting on a nerve that affected my face.

Daisy2My doctors determined that because I was 37 weeks pregnant, there would be a risk to my baby if I started on steroid treatment right away. In the meanwhile, I could work on facial massages and alternating between hot and cold compresses. I had to use eye drops to keep my eye moisturized, manually blink the lid, and tape it closed while I slept to avoid injuring myself. I had to drink with a straw while leaning to the left as liquids would pour out the right side of my mouth. Chewing was not difficult. I resorted to using a wad of gauze padding on the inside of my right cheek while I ate, to avoid chewing my cheek. I wasn’t feeling the pain, but I didn’t want to get an oral infection either. My face felt like I had been to the dentist and got a serious dose of novocaine that just wasn’t wearing off. I slurred when I spoke. And I drooled. Lips that cannot be kept shut allow drooling. I had to keep a rag with me, usually covering the right side of my mouth.

After a week, I was cleared for steroids which were supposed to calm whatever inflamed nerves had caused this condition. Prednisone was necessary, I was told. But they didn’t tell me it would make me jumpy, on edge, and with a constant heartburn. I read everything I could about BP, but nothing reassured me it would not be permanent. Recovery rates varied. My life depended on me looking normal, as I worked in an industry where I was customer-facing.

I remember the cold dread that sat in the pit of my stomach, constantly there, feeling heavy and tight. I hated to walk by mirrors, deliberately looking away as I passed by. I couldn’t accept that the person looking back was me. I hated going out in public, cringed from the stares and the looks of pity that I got. I avoided eye contact because it meant I could ignore you if you addressed me, and if you smiled at me, I wouldn’t be tempted to smile my grotesque half lip-curl. I remember having to pick up my mom at the airport, and feeling just so exposed standing there in the arrivals terminal. The looks, the pointing, the whispers. I am sure some of it was my imagination, but that did nothing to make me feel better about myself. I was ugly, my feet were swollen and looked like Caribbean yams, I was hugely pregnant and waddled. It sapped my physical and emotional strength, and humbled me in a way I would never have imagined. I think this may have been the darkest period in my life, but no one was able to tell me convincingly that it would get better.

Having my mom was really good for me, especially during the daytime while my husband was at work. She kept me engaged, busy, limiting the time I had to feel sorry for myself. Because of that, I’m not sure exactly when my condition started to improve. I remember my sister visiting the day before delivery, and she asked me if I had just blinked. Apparently I had, and hadn’t realized it. I could have blinked my eyelid crazy out of sheer exhilaration. The next day, BP took a back seat as my focus turned to labor which progressed into the following day. While I wasn’t allowed to eat, I handled those ice chips really well, apparently, and kept them in my mouth. It seems that 36 hrs of labor was also good for my facial exercises- intense puffing, grunting, grimacing….in newborn photos my husband took, I couldn’t detect any paralysis at all. I was actually smiling.

Daisy3In the intervening years, I have accepted that my recovery has not been 100%. In the grand scheme of things, 90-95% is acceptable. My eyelid droops when I’m tired. I have tics in my eyelid sometimes, and if I sleep on my right side, that side of my face is slower to wake up. And I can no longer wiggle my right eyebrow. All in all, acceptable, as I can do nothing to change it. I tell myself it could be worse. And I try to maintain a sunny outlook, because I’ve been told that once you have it, it’s like remission. And it can recur. But for now, I will dwell on what I can do, and celebrate 15 years of me being strong.

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2 thoughts on “Bell’s Palsy – my scary, lonely journey.

    1. Thank you! Years ago when I contracted it, I searched for all the information I could find to learn more, but there weren’t any personal stories. I hope that sharing this helps someone in some way. It’s a lonely, scary place to be.
      Jacqui

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