Bell's Palsy
It can affect anyone
29th December 2014
8th December 2014
I'm still suffering from the extreme exhaustion and have just put out a search on Google to see if it has affected anyone else the same as me. Here's the link I found.http://www.bellspalsy.org.uk/support-forums/index.php?action=printpage;topic=663.0
I also visited my doctor who told me that after something like Bell's Palsy affecting my body it's still early days yet. I am now pacing myself.
On reading a few sites it seems that when you are first diagnosed you should rest as much as possible. If only I had known. I pushed myself as much as I good thinking that I wouldn't let it beat me.
8th December 2014
I
suddenly realised that I haven't updated my progress since August. The good
news is I am still writing on and off. The bad news is the exhaustion continues
to plague me. I still have to use eye drops, in both eyes now. It's not really
a problem; the alternative doesn't bear thinking about. Eating is still a
problem as are the pains in my ear and face.
The small electric shock pains that started when
I first had the Bell's Palsy began getting worse as the months passed. In the
end I went to see a doctor, who said I have developed osteoarthritis. Not good.
He says that it isn't a side effect of the BP. I will always think that it
triggered it. I had never suffered this pain before in my life. The pain of the
OA affects my life considerably, but I have to cope and just get on with the things
that I can do, rather than dwell on the things I can't. Life is still good.
I
thought I would share the good news that my eye is at long last improving. I
still use the drops in the daytime and the ointment at night. I don’t intend
leaving them off anytime soon.
The
exhaustion continues to be a huge nuisance. I find myself falling asleep at odd
times during the day and evening.
Also,
the pains that I experienced when the Bell’s Palsy first hit me still plague
me. But not so often thank goodness.
On
the positive side I am making good progress with my new novel. I’ve almost
completed the first draft, I never thought that I would achieve this before
Christmas.
1st
August 2014
I've
not posted for a while as I've been hoping to be able to write positive news
regarding the illness. Unfortunately, my left eye is still painful, and at
times will not close properly. I sleep well, but I wake up feeling exhausted
most days. I also suffer a lot of pain.
I
do try to eat a well-balanced diet, but my appetite has never returned. I
should imagine this is another reason for the exhaustion I'm experiencing.
I'm
sorry if the above sounds negative, but it's no good saying I feel fine if I
don't. I wish I felt as well as I did before the Bells Palsy happened. I do
keep myself positive, and I'm constantly telling myself it's still early days.
I've
just done a search on the after effects of Bell's Palsy. I came across a
discussion forum and discovered there are people who are experiencing the
same symptoms that I am. In a strange way, this is reassuring. I did begin
to wonder if I am imagining them.
Although
I do not spend long at my computer because of the eye problem, I am making
progress on my latest novel. At least the fog has left my brain.
7th July 2014
Today is the first day I have not woken up
with pain in my left eye. It was brilliant. True, after a couple of hours the
pain returned. I experience a lot of muscle pain which I never had before the
illness. I find concentrating on anything quite difficult. There again, writing
on the computer should only be done for short periods before taking a break.
Muscular pain is also a huge problem that
I am experiencing. I’ve read that this does occur. Hopefully along with the
other symptoms they will eventually disappear.
5th July 2014
I thought as it had been a while since I
visited this blog I would post an update.
A few symptoms of the illness are still
refusing to leave me. I have trouble eating, I have trouble with my nose,
sensation has not yet returned to it, and I don't realise that it's running
until it's too late. It can be very embarrassing. The worst is the pain in my
left eye. I have to keep it closed much of the time. I am still using the drops
and ointment at night. I have had my eyes checked and fortunately both are
healthy. The illness hasn't damaged them. Proof that constant use of the eye
drops has helped.
The exhaustion is also bad. I know that in
time things will return to normal.
I am spending a little more time at the
computer. At long last, my book is beginning to make sense! Goodness knows what
happened when I was ill and tried to write. On reading the printout, I thought
someone else had written it! Nope, it was me.
17th June 2014
Yesterday was a disastrous day for me! The
pain in my left eye lasted all day. In fact, I felt ill all day. Various aches
and pains did nothing to help me. The worst being pains like electric shocks in
my left leg, the same type of pain that affects my eye. Fortunately by late
evening the pains disappeared. I do still have the numbness on the one side of
my left leg; this is quite worrying, as now and again the electric-shock-type
pain returns. At least my eye is far better today than yesterday and the
numbness has left my top lip.
I have been writing on and off this
morning and catching up on a few jobs. It's surprising how many jobs have
accumulated over the last six weeks or so. It will take me a while to get
through them. Exhaustion is another bad side effect of this illness. I'm hoping
in time this will eventually pass.
Now to write for thirty minutes or so.
16th June 1014
It's not a good start to my week. My left
eye is extremely painful. I put eye drops in; unfortunately, for some reason or
other, this made it hurt more. It feels as if someone has punched me in the
eye. It's very sore indeed. My top lip also feels as if it is frozen. I do hope
this is not a bad sign. After making such good progress, I'm surprised that I
am having the same symptoms as when the Bell's Palsy first came on.
I will stay positive and try and carry on
as normal.
As I keep saying, this blog is not about
me moaning. I am writing everything down so that anyone who is suffering from
it now or at some future date will be able to compare what is happening to
them. Hopefully it will take some of the fear away. Bell's Palsy can be scary
at times. Knowledge is a powerful tool.
12th June 2014
It is around six weeks since the first
signs of the Bell's Palsy made itself known to me. I feel I am fortunate that
it is now gradually leaving me.
One of the remaining symptoms is that my
left eye will still not close properly. I continue to use the drops and the
cream – the latter last thing at night. My eye continues to be at its most
painful first thing in the morning. Another symptom is the exhaustion, some
days worse than others. And also the mouth and tongue ulcers. I remain positive
that it will eventually go within the next month or so. Hopefully it will never
return.
I wrote that my sense of smell had
returned. Unfortunately it has all but disappeared. I've also noticed for the
last few days that my sense of taste is not a 100%. Food does not taste the
same and meat, or anything meat-based, leaves a nasty aftertaste, as do certain
other foods. I had experienced this before the Bell's Palsy reared its ugly
head.
I am now able to do small amounts of
sewing and embroidery. I’m so happy about this as it is a sign of progress.
Trying to do too much of anything only results in bringing the eye symptoms
back. Hence it's best to keep certain things in check for a while longer.
30th May 2014
Mornings are the worst with this Bell's
Palsy. I expect it is because the affected eye has dried out overnight. Through
the day, things improve slightly, and now I am able to type for longer and get
on with things. My eye still refuses to close properly, so I frequently use the
eye drops. I am not in constant pain, but my face is still paralysed on the
left-hand side. I still have to be extremely careful what and how I eat. My
sense of taste is still far from perfect, and the tingling often returns to my
lips. That can be scary, because this was how it originally started. I stay
positive.
Craft work, keeping my mind busy and not
dwelling on my symptoms is my way of dealing with it. This is not one long
moan! Far from it. I list the symptoms here in case anyone else suffering from
this illness lands on the blog, looking for help.
As I mentioned at the start of this blog
weeks ago my doctor simply handed me a prescription for the steroids, and that
was it. I had to find my own way through it.
Back with a vengeance – but a few lighter
moments. 29th May
Oh dear, my eye trouble returned with a
vengeance this morning, as has the exhaustion. I feel wiped out. The pressure is
in my head again. I slept well, so I'm surprised. I suppose it's to be
expected; although it's nearly a month along the way, it's still early days. I
am hoping that things will improve as the day(s) goes on.
I had a quickie divorce a day or so ago!
My wedding ring slipped off, the colder weather didn't help. Not being able to
eat properly has led to my losing weight. I'm not bothered about this as once
everything returns to normal the weight will return. For now, my wedding ring
is on another finger.
Another thing is my sense of smell
returning. I can't get used to it. For so many years I've not been able to
smell flowers (occasionally horrid smells made it through – but rarely). Nice
scents drift across and around me; it's wonderful.
With not being able to see clearly my
writing was indecipherable; at times this caused a lot of laughter, when my
husband tried to work out what I'd written. My speech became slurred in the
early days; as he is deaf, it was comical.
A friend sent me a gorgeous Jackie Lawson
card. I was touched by her kindness. It's always nice to be remembered. This
illness can make you feel isolated. It's difficult to go out as you feel (and
they're probably not) as if everyone is staring at you. Still, it doesn't last,
and life will become more normal as each day passes.
I'm going to plant some seeds in pots when
I can; this will give me something pretty to see through my back window.
My wild-flower mats are coming up
beautifully in the front garden. I'm looking forward to seeing them flowering.
Progress
28th May 2014
I've hit a dip today. I don't know why but
I feel really down. I am doing my best to carry on regardless (as they say). I
am really pleased that I am finally, after nearly a month, making headway with
my novel. I was 30,000 words in when I realised that it just wasn't working. I
started over with it, then became ill and all my words went gobbledygook.
Returning to it, I edited it, and I'm now working on an improved storyline.
I'm managing to paint and finally put a
few stitches of embroidery into my moorland picture. I'm also creating a few
bookmarks to decorate my room. It all helps to keep my mind busy and not dwell
on the Bell's Palsy.
A friend bought me a beautiful plant and
another friend visited with a wonderful bouquet of flowers. I get quite
emotional when people remember me.
My eye refuses to close. I still can't
eat, feel or do much with the one side of my face. I do feel more human though.
The pain is still in my eye, and in my jaw on the left side, and every time I get
the earache I do fear that the Bell's Palsy will return. I have read that this
is unusual, but it has been known.
Please do not think that by mentioning my
symptoms and illness I am moaning. I'm not. I've accepted that it has happened,
and decided to log everything in the hope that anyone else who develops it can
compare their illness to mine. It is frightening when it happens.
Expect the lows, it's natural. You've not
been able to eat properly for however many weeks. Try to dream up new hobbies
or pursue old ones. When you can read properly again, things will begin to
right themselves within your world. Avoid flickering images anywhere, on the
internet or the television, this can cause awful disturbances in your eye.
Flashing lights can also cause trouble.
Progress on
Bell's Palsy
It's the exhaustion that's as bad as not
being able to close my one eye properly which is getting to me a bit! I feel
completely wiped out most of the time. Normally I have lots of energy. I
Googled, 'Bell's Palsy – exhaustion', to see if others suffered the same. I
found a site where there are many reports of the same symptoms I am
experiencing. It helps to know that you're not on your own. The exhaustion
lasts a long time, apparently. Some people are still suffering twelve months
along the line. As do the attacks of mouth and tongue ulcers. It's all very
debilitating. This is really an isolating illness. It's not spoken about in the
media, or anywhere for that matter. You get the steroids from your doctor, and
that's it!
I went to a local garden centre yesterday
and bought some wild flowers. Now I have something pretty to focus on through
my back window. I am managing to paint my fabric scenes, knit, and generally
get on with life. The garden will help. Once I can get back into a routine, and
a good sleeping pattern established, things will fall back into place.
Another thing that I noticed is that I
have regained a sense of smell. I am amazed, yesterday I smelt the scent of the
flowers I had bought. Not so long ago I smelt the bluebells in the woods. I
lost my sense of smell when I was young. Smelling the flowers brought back a
long-forgotten childhood memory. I hope it remains with me when I have
recovered.
My eyelid is twitching, I hope this is a
good sign!
This attack started in early May, but it
took at least a week before it reared its ugly head completely! So I would say
it started around the 6th May – 20 days ago.
A useful web link:
Progress – Day 15 Sunday
I was hoping that by now my left eye would
close completely. It won't! I think I am more accepting that it will take
considerable time for all the symptoms to disappear. My mouth is still
partially paralysed, as is my tongue. I do feel more positive as I have
developed coping strategies for writing onscreen. Brilliant.
I have changed the theme colour on my word
page. This takes a lot of the glare away. Hence it is more restful for my eyes.
I use bold typeface and a Garamond font. If I write anything, I save it to PDF
and then deploy Read Only, I find this a tremendous help.
I have also managed to do another
painting, and knitting helps.
The eye distortion is not nearly as bad
now. The pain is always bad first thing in the morning, but it gradually eases
through the day. I find keeping my mind constantly occupied helps. Resting and
relaxing is hugely important. Never overdo things.
A useful website I found is:
Progress
Day 11 Wednesday
We went shopping. I thought it would be
good to get out of the house for an hour. I must say I found it exhausting
after an hour. I took the eye drops and other stuff with me. I began to wilt
badly at the checkout in Marks & Spencers. There are no chairs handy to sit
on along the aisle. This is very bad, Marks & Spencers. I'm sure a staff
member would have helped out, if I had asked, but who wants to draw attention
to themselves? In fact, I think that Marks & Spencers in our area is not
customer friendly. Most major stores in the UK provide chairs for their
customers to have a quick check of their goods or rest their weary legs. They
are unbelievably slow on the checkouts and make us feel nuisances. But that's
just an aside, it's unimportant to my story. We were soon home, and I had a
rest.
My eye is not so painful, but I still
can't blink. I am still getting tremors in my nose and lips, and my tongue is
very sore. I don't know if I am actually improving (I hope I don't develop a
Bugs Bunny twitch permanently when I've recovered) or if I am now adjusting to
the illness.
I edited nine pages of my latest book this
morning. It's taken me ages as I can't see properly! But I did it, I feel the
need to write or the words will splatter out of my head all over the house!
It's a good sign, another step along the road to recovery.
Staying positive is so important. Pamper
yourself. Give yourself a little treat now and again. Have a long soak in the
bath; it will help ease any aches and pains. The headaches can still be bad, as
can the ache in the side of your face. These symptoms I’ve mentioned above are
normal, according to what I’ve read about this illness. I experienced
half-halos of coloured lights and floaters in my right eye three days ago. That
was scary, but it passed.
I hope this helps someone else with this
dreadful illness.
Apologies as usual for errors.
Day 10 Tuesday
Woke feeling very tired, although I had
slept late for the first time since becoming ill. I felt a little better later.
There felt as if there was a lot of pressure in my head. I rested a lot,
feeling it best to let my body dictate its needs.
My eye was still quite painful. Movement
is returning to my left eyelid, but it still won't close properly. I leave the
eye pads off for about five minutes in every hour, when the pain isn't too
awful.
My lips and tongue still tingle, my nose
had a tiny amount of feeling return to the left side yesterday. Giant steps
towards recovery.
Fresh fruit and vegetables are helpful
when mashed – chewing is difficult so take tiny bites.
Warm flannels held on your face help the
pain and are comforting.
Keep your eye moist with the drops at all
times. The cornea will be damaged if you do not protect it from all dust and
dirt.
Keep yourself safe from open doors,
cupboards and your pets, it would be terrible to have a bad fall at a time like
this.
Keep your mind occupied and positive.
Apparently you recover certain areas of your face at 1–2 mm a day! Brilliant.
I managed to do more to my painting in the
afternoon. It helps me to relax which is most important when you have this
illness.
Over the years, I have read a few accounts
about Bell's Palsy in various magazines, but they were few and far between. It
is not a well-known illness. The steroid course finishes tomorrow.
I decided to write a full account of my
symptoms, because I could not find anything about it on the internet. I only
came across one helpful blog – in the US. There are numerous websites out
there, detailing the details of the illness and diagnosis, but nothing that
might be helpful for comparing the symptoms.
Last week, May 7th 2014, I was working in the kitchen, when I
became aware that my lips were tingling and also going numb, particularly my
top lip. Also, at the back of my tongue, on the left-hand side, felt as if I
had developed an ulcer on it. My mouth suddenly became ulcerated. I wondered
what was happening. I rarely have mouth ulcers. In fact, I have been remarkably
healthy (apart from being very tired some days in recent months) for the last
fourteen years.
The numbness and tingling passed quickly.
I checked on Google and everything seemed fine. It could be a one-off happening
or neurological, but as I was feeling okay, apart from the ulcer on the
left-hand side of my tongue, everything was back to normal.
Over the following few days, I felt a
little queasy and thought I had a slight gastric infection. I also began to
feel extremely tired. By Sunday I felt positively exhausted and fell asleep for
two hours in the afternoon and in the early evening. I truly thought it was a
sign of old age! My eyes were very dry that day and aching. Later that same
evening I was chatting to my husband; I was trying to say the word
'intransigent'. No way would that word come out of my mouth.
I went to bed to read, and my right eye
felt strange, my left eye was twitching, very strange. I went to bathe them;
when the water hit my left eye I jumped, it was extremely painful. Snuggling
down to sleep my left eye was twitching, and I could not close it. I had to
hold it down. It was most peculiar. I fell asleep and slept quite well, but
woke early to the awful shock that my eyes were twitching and were most uncomfortable.
The left one (which I have sight problems with normally) was painful in the
extreme. I went and dressed hoping it would just disappear. Looked it up on the
internet and discovered that it was probably Bell's Palsy, not a stroke.
I managed to get an appointment at nine
o’clock with the duty nurse at the Health Centre. My stomach (along with
everything else) was terribly upset. I was really scared. The nurse examined my
face and said she thought it was Bell's Palsy, not a stroke. I felt huge relief
and she said the duty doctor would see me and to wait outside. My blood
pressure was raised.
The Duty Doctor confirmed her diagnosis,
and gave me a prescription; it was for a high dose of steroids to take for ten
days; apparently if you take them within 72 hours of the onset of the symptoms
they will help protect the facial nerve that causes the Bell's Palsy. My mouth
began to tingle while I was in the surgery and went numb on the left side, as
did my tongue. I couldn’t puff my cheeks out, another sign. You can’t whistle
either. My left eye was frozen, but extremely painful, as if someone had poked
me violently in the eye. I couldn’t blink or move it at all. My nose was and
still is completely blocked. All this was frightening; I was losing the use of
the left side of my face.
I had my prescription for eye drops, eye
cream, steroids. The doctor printed off an article about Bell's Palsy and gave
it to me. He said, 'See you later.' That was it, on my own without any
knowledge how to proceed.
At home I tried to tape my eye down, it
helped to ease the pain. Unfortunately, despite having the softest tape from
the chemist it still pulled the skin off my face and nose, and my eyelashes
out. I have to have the eye drops in every hour at the least to protect the
cornea, otherwise it can get scratched and dry. I cover my eye in paper eye
pads, and then pad it out with tissues. My glasses hold it in place for a
while. This helps keep my eye closed and protected. It is difficult, doors and
cupboards appear out of the blue!
Another symptom was my tongue turned
totally white. Now it is returning to a pink colour with strange looking marks
on it.
This illness can happen to anyone of any
age. It is caused (they think) by a dormant herpes virus, from, say, chicken
pox or a cold sore, that suddenly becomes active again, even after many years.
It went on to say that it can be caused by a head injury; reading this I
wondered if hitting my head on an overhead cupboard last week had set it off. I
don’t know. But then the tiredness that I’d been experiencing for the last
twelve months could well have been a sign.
There is nothing that can prevent Bell's
Palsy happening, and there is no known cure. Scary or what?
There is no aftercare. I’ve read a few
boards where the doctor said exactly the same as mine did to me, but it seems
that you have to find your own way through the mire. No two cases are the same.
Eight days on, and my left eye will still
not close. I have to keep it covered. It has started to even blink now and
again along with my right eye. Writing and reading are really difficult most of
the time.
My vision in the affected eye is extremely
distorted and swimmy. The strange thing is I see things in that eye that
happened a few minutes ago or even earlier. It’s very strange. I see odd shapes
and colours, most things are distorted and were for the first six days. It made
me feel ill.
Not being able to chew except on the
right-hand side is difficult. I mash fresh vegetables up, eat yoghurts, jelly
and custard. I’ve been having soup at some very strange hours of the day and
the night. I’ve started to take vitamin B12. Some people say that it helps. I
will try anything! I’ve heard of people injecting high doses into themselves. I
would not fancy that.
Yesterday was the best day, and I managed
to do a few things. I even managed to paint a picture, keeping my left eye
fully covered. There was no pain or distortion in it at all until I went to
bed.
It is essential to ensure that all food is
cleared from the affected side of your mouth.
I’ve left the computer alone in the main,
apart from a few emails to friends. Knitting has helped, just making up
patterns on the go. It is far too difficult to concentrate on new things.
I have thought of having physiotherapy,
but it would have to be private, it’s almost impossible to get into the system
at the Health Centre. Maybe it is too early for that.
I did ring and manage to have a triage
telephone appointment with a doctor (the practice nurses do not call back). He
listened to my concerns, but of course, he is also working in the dark with
this dreaded illness.
My mouth and tongue are still numb; my eye
is still badly affected.
The main thing is to keep positive and
hope that within six weeks to eight weeks the signs of it will disappear
altogether.
It’s best to stay positive, but do not
feel guilty if you feel depressed, in time the symptoms will improve. Rest,
relax, if possible avoid stress, this does make it worse. I received the news
that my youngest brother had died when I was a few days into this illness. That
was a terrible shock. My dog is also very poorly, I can cope. My husband is
being supportive and helping as much as he can. Of course, I play my part; I
don’t sit about thinking about it. Going out is difficult as I am frightened of
falling over and making things worse!
I have read in various places that people
still have symptoms years later. This is rare though. I concentrate on the
positive posts, not that I do not feel terribly sorry for the people still
suffering after living with this for so many years.
If anyone is suffering from this illness
or has recovered from it and found a way to keep the affected eye completely
closed, I would love to hear about it!
I'm lucky, I could have been affected far
worse than this.
Please excuse any errors in this article;
I still can’t read properly.
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