Monday 19 May 2014

Bells Palsy - Updated 29th December 2014

Bell's Palsy
It can affect anyone

29th 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.

20th August 2014
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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