Friday, September 30, 2011

I found a 'weblog' from my third month with Bell's Palsy, 8/14/10

Photo from about day 11 (I couldn't close my eye yet, but you could already see a dimple coming back and a crease or two---the crooked smile is due to the right side of my face being paralyzed by Bell's palsy in May 2010):

My First 3 Months: progression, emotions (guilt), soap box

My onset was typical, in that it was quite a shock. But interesting, in that I had actually heard of Bell's palsy for the first time the night before it happened to me.

I was reading on-line on a Saturday night to gage how long I could safely wait out my ear infection without going to the doctor. On two seperate sites, someone with Bells posted thinking they had an ear infection, but were informed by other posters they should go to the doctor immediately; they might have Bell's palsy. Since my taste buds had gone awry the day before, and since my face was getting numb, I joked to my husband that I must be getting that, too. At that point he prodded me to get off the internet and get some sleep. And I woke up with Bell's palsy.

That was Sunday morning, and I thought I knew quite a bit by Sunday night. I would probably "get better in a couple of weeks". I would be able to continue working and enjoying a normal life, aside from what my face would look like. There was a 20% chance I would not recover, or that it would take a long time to recover.

So, I went to work the first couple of days. Didn't last more than an hour or so either time. Had a rough time getting out of bed at all for the next several weeks. Read more and realized that I was not alone. Found the Bell's palsy Network's forum and realized I was really, really, not alone, and that virtually no other single site seemed to show more than 30% of the whole picture. I'd be tremendously fortunate to regain any movement at all in under a month; it would common to remain tired for quite some time; pain would be normal at many steps along the way; the overwhelming frustrations with my eye would not likely pass quickly....and on and on.

Hence my primary soap box:

Given the HUGE range of recovery experiences, including the HUGE range of symptoms and the HUGE range of recovery time frames, why do so many articles, doctors, and reputable medical facility websites authoritatively depict Bell's palsy as a temporary and minor affliction?

I don't mean to sound bitter, but it was hard enough to explain why, after 4 weeks in bed, I wasn't ready to be back at work, without friends, doctors, co-workers and loved ones reading that I should already be back to normal. It was hard enough to feel OK about it myself. I was overall very optomistic. But I was a FAST recover-er still feeling guilty for taking so long.

If it weren't for that forum, there were days that the guilt and fear would have been overwhelming.

The day my steroids wore off, I woke up in so much pain that I was terrified. I hadn't searched the forum yet for pain-related topics, since I hadn't experienced it yet. And I didn't find that symptom listed anywhere else. I also would never have believed that moist heat could combat that kind of pain (nor would I have found the awesome wrap around heat pad at Walgreens that made my life SO MUCH BETTER during those weeks). I also would not have known to feel glee and excitement the day, later on, that I woke up feeling like I got punched in the face (because it meant I was about to start getting some movement back--which I did).

My progression:

The first DAY, I saw some tiny improvements between morning and night. I could sense some movement in my eyelid when I tried to blink. My husband could see it, too. I was getting tiny bits of movement in the first week and was able to somewhat close my eye. I knew I was lucky. I knew my recovery was going to be on the faster side. I had a fair amount of recovery by the end of the 3rd week, and my face was mostly recovered by the end of week 4. It is about the same still, 2 months later.

I still have:

-weird ear/hearing symptoms (vibrations in my ear)
-tiny bit of droop/sluggishness to my upper lip
-twitching in my eye (lower lid)
-sensitive tongue
-reduced tolerance for stress

I am extremely grateful to have come this far this fast. But I have to be honest that I am extremely tired of feeling this limited and tired. I was one of many that said in the beginning that this is one of the best things that has happened to me (which may very well come as much from the steroids as from the gratitude to the universe for giving me a non-permanent wake up call in regards to stress, health, and perspective), but I am very ready to have my health back.

I want to run and hike and be able to really do my job. And I am very, very much not there yet. I should be grateful, and I am, but I have also been tremendously patient with this (my whole summer has been devoted to recovery as opposed to summer) and at the moment, I guess I'm feeling somewhat entitled to my impatience.

I feel better for typing this. Maybe even more patient......definitely grateful.

No comments:

Post a Comment