Coping With Bell's Palsy

April 27, 2004 should have been a great time in my life. I had been retired for a year and just beginning to enjoy the easier life. With no warning other than a bad night sleep with an ache in the middle of my back that wouldn’t go away about dawn I finally woke my husband and asked him to drive me to the emergency room at our local hospital. I just did not feel right.

Ours was a very small hospital so one of the local doctors would take the overnight ER calls and as luck would have it my GP was on that morning. He ran a few blood tests and had my husband drive me to Ottawa - half an hour away and go to emergency where he would arrange for me to be seen by another doctor and get a cat scan.

We did this had the scan - met with a neurologist and had some tests done to my legs with electrodes and he felt that I had experienced a mild case of Guillaine Barre [Guillain-Barre] - not having ever heard of it before he explained it to us and asked if I had recently had a viral infection - which I had not. Then he mentioned the possibility of a flu shot which rarely could be the culprit. As it turned out I had my first ever flue shot just a couple of months previously. All in all I felt not too bad - so we headed home secure in the fact that I was okay.

Within 24 hours I was admitted to our local hospital because I was having difficulty walking and then I started to have breathing problems. I was quickly sent back to Ottawa by Ambulance and met with the same neurologist who did a Lumbar puncture and said I did indeed have GBS

I was admitted to hospital and that evening started the first transfusions (3 days worth) which arrests the GBS in its tracks but does not cure it. Three days later after this treatment I was sent back to my local hospital and it was here that I developed Bell’s Palsy to go along with the GBS What a time - face all twisted on left side - eye unable to close and leaking and not able to eat as I was numb around the lips, nose, and had no facial muscles. This fortunately lasted only a few days and started to recede. However I could eat very little as everything tasted as though a box of salt had been emptied on everything. Even my beloved pasta. It took 2 weeks for that to pass thank heavens.

Fast forward to today July 6, 2007 and I still experience mild attacks of GBS sometimes once a month other times more often and occasionally can go 2 or 3 months without any notice of it at all (other than the fact that I still have a weakness around my mouth on the left side).

I do have extreme fatigue and this never seems to go away. If I want to do something it is best that I do it in the morning before lunch - as after that I am too exhausted to do more than normal food preparation. Socializing in the evening is out. It’s not as though I am in bed with fatigue - just unable to do much physically. Sometimes just thinking about it is tiring. Wish I had a magic potion to insert energy - but then who am I to complain - I do have the ability to walk, talk, dress and do for myself and have a wonderful husband who picks up all the slack.