Personal Experiences with Bells and Facial Palsy
Life with BP started for me on 10th February 1994. Seven days previously I had given birth to my second child, a 9 pounds 13 ounce daughter and although I had planned to escape the clutches of the hospital within 24 hours, in fact they made me stay put for 5 days after the birth. They didn�t really say why apart from that my blood pressure was still a bit high after the birth and I was too tired to argue. I had a little boy just one month short of his 4th birthday at home and couldn�t wait to get back to him, so the day after I got home I took him out for a burger and left the baby with her dad.
It felt really weird wandering about, everything was a bit fuzzy, like I was in a bubble and my lips felt strangely numb on one side, but along with the rest of the aches and pains that you get after giving birth and a nasty case of piles (ouch!) I didn�t worry too much.
By the following lunchtime I noticed my eye wasn�t shutting properly, things were starting to become paralysed on the right side. I remember my husband staring at me across the table while we were eating and he started to cry. We called the doctor and she diagnosed BP over the phone and sent me back to the maternity hospital to see the doctors there for confirmation. My Dad took me and my husband stayed at home with the children because my little boy wasn�t well.
At the hospital they checked me over and confirmed the diagnosis, prescribed steroids, told me I couldn�t breastfeed and sent me home. I wasn�t given any eye care information or drops, so the eye was very uncomfortable and I patched it as best I could. I was horribly tired and I suppose in shock too over the next couple of weeks. Family offered help, but apart from my Mum and Dad no one actually did anything to help. They didn�t visit apart from the initial stream of visitors to see the baby. They didn�t even call to ask how I was doing. The Doctors didn�t ask to see me again after saying I would be better in 6 weeks and never get it again, and I was told by the physio department at the hospital to make big vowel sounds to exercise my face!!?? I am so glad I didn�t take much notice of that dumb idea!
A few days after the diagnosis my husband took to his bed saying he felt ill. He should have felt how I was feeling!!!! So I had to call on my Mum to stay a couple of nights to help out. After that Mum went home, Hubby went to work and I was left to get on with everything. I crashed the car the first time we went out. My vision was appalling and thinking back, the risks I was having to take in order to get my son to school were huge. But I wasn�t feeling good or thinking straight. I realise now that I needed help, someone to at least talk to but I am the sort of person who just gets on with it and that�s what I did. I didn�t have time to feel sorry for myself or cry about not being able to smile at my baby, I just did what I had to do and in eight weeks everything was moving again.I just thank God that I never had post natal depression as well, but it amazes me that I didn�t. It still took time for things to �feel� right. It was about 2 years before my eye felt right and 4 years before my mouth straightened up into a better smile. I didn�t worry about getting it again though because I had been told it wouldn�t happen.
In January 2000 I was feeling pretty low after a cold that just wouldn�t go away and an awful ear infection. I had spent many months redecorating the whole house and I guess I overdid things with Christmas and some stressful family incidents during the past few months as well. On the 19th January the tingling in my top lip started and as the day progressed the paralysis began. I warned my children who were 5 and 9 at the time, that by tomorrow morning my face might be stuck and sure enough the next morning the left side of my face was totally paralysed. I went to see the doctor who didn�t believe I had had it before until he checked my notes, saying that he had never heard of anyone getting it twice. He then asked me what dosage of steroids I should have! I told him what I had before and he prescribed the same, plus some eye drops. Then he sent me home saying to come back if it didn�t get better.
I truly expected it to be better by 8 weeks just like before, but I should have realised that with the pain, droopiness and far worse eye discomfort, that this was a much worse hit and that it wasn�t going to get better in a hurry. However having set myself a goal of 8 weeks, it was desperately upsetting when it wasn�t better by then. I was insanely tired this time, so much so that I couldn�t even vacuum the house without short breaks between rooms. I was hyper while on the steroids, but exhausted at the same time! Pacing one minute and then crashing out the next. My eye was horribly uncomfortable and so the doctor gave me Lacrilube, but even then sleeping was hard and taping just didn�t keep the eye shut. My 5 year old suggested using her swimming goggles in the shower and that was a huge relief. Life was pretty miserable, but I carried on as always, although driving with a patched eye is not to be recommended!
One day I decided to read up about BP on the net, because I wanted to know more about it and was amazed to find loads of information and even a couple of forums. I registered at one and was so happy to find people to talk to, ask questions and finally realised I wasn�t the only one with this. I was able to ask all my questions, learn and finally start to help other people too. Pretty soon I was addicted! LOL Finally at around 6 months everything was moving again, although not correctly, I had some synkinesis developing, my eye still didn�t blink fully and my smile was very wonky.
I went back to the doctor and asked to see a neurologist, but he refused and said there was no point. I also asked to see a physiotherapist, but he said there were none in my area who would be able to help. At 10 months I was fed up with the whole thing and went back and offered to pay to see a neurologist privately so he agreed. However the doctor was right. All the Neuro did was confirm I had BP and took a few blood tests, which at 10 months in were a bit late if anything else was wrong. He did offer to refer me to see a physiotherapist and yes she was in the right area! She said there was no need for a private consultation and told me to ask the doctor for a referral to see her and she would see me under the NHS. I had three appointments with her. She simply confirmed that the exercises I was doing from the BPIS website were okay and showed me how to do them correctly. Then said it was all down to me.
Since then I have made more improvements, but now 4 years after the second BP I still have a slow blink on the left, my left top lip is weak and I can only do a wonky full smile as the lip doesn�t lift properly. I have some eye/mouth connection synkinesis which has improved a lot with just concentrating on keeping the eye open when I eat. Other people don�t seem to notice it much, even though I am very aware that I talk out of one side of my mouth and my right side is more animated than the left. I don�t know if this is because they are being polite or just that they have got used to it. I think the getting used to it part is very likely with family and friends and sometimes that can be hard, because they forget about it and don't realise that it can become stiff and painful when I am stressed, ill or tired. It doesn�t bother me too much really, most of the time I don�t think about it at all and then I get a one sided headache and it just wont let me. Like many BPers my face has become a built in stress monitor and I know when I have to take things easier, because my face reacts badly otherwise.I spend a lot of time on the forums now, trying to help others with this affliction and that is where I met Carrie and together, using the wonderful poetry written by BP/FPers, we created Crooked Smiles. :)