The Bells Palsy saga

The Royal Sussex County Hospital

Before I tell the story of my Bells Palsy saga I just wanted to speak about the health professionals (and amateurs) I have encountered all of course part of the NHS. All of the staff and volunteers (yes there are volunteers helping to keep the NHS going) have without exception been wonderful. In incredibly pressured environments with peoples lives at stake they have smiled and calmly worked to resolve my and other peoples issues. I salute them all!

First symptom

For me the first symptom was a very slightly numb tongue (in retrospect half a numb tongue). It was so slight I was aware of it for a couple of days and thought nothing of it, in fact I wasn’t sure if I was just imagining it.

More symptoms

I woke to discover that I couldn’t whistle (I’m not sure why I tried to whistle, something on the radio I guess). This made me wonder because I realised that I couldn’t make the mouth shape required to whistle and that didn’t seem right. Slowly during the day I noticed a few smaller things like the fact that I couldn’t seem to smile correctly in front of the mirror. A smarter person might have thought at this point, time to go to the hospital, because (In retrospect) the symptoms were starting to take the shape of a stroke. Perhaps unwisely I slept on it.

Time to go to A&E

I woke up the next day, took a look in the bathroom mirror and realised things weren’t getting any better, indeed they seemed to be worse. Time to call the doctors surgery, the receptionist listened to my symptoms but stopped the call and told me to ring 999 for an ambulance. It sounded like I was having a stroke. I seemed to be ok on my feet and so I decided instead to walk over to the taxi rank and jumped in a cab. Casually chatting to the driver about the weather and how business was doing felt rather like fiddling while Rome burns as this cab ride could represent a significant life change for me if I was having a stroke.

The Royal Sussex County Hospital A&E was pretty full already but the St. Johns Ambulance volunteer who does the first level of processing fast tracked me to reception who fast tracked me to the first assessment stage. The nurse agreed it sounded like a stroke but also suggested it could be Bells Palsy (first I’d heard of it). Good spot from her. I was taken straight through to the next level of treatment where I waited for a short while. I was essentially being monitored to see if anything developed. After a few minutes the doctor said he believed it was Bells Palsy and threw me back into the regular accident and emergency pool. The waiting starts.

You see the world in A&E and if you wait long enough you’ll see a lot of the world. Several elderly patients came in after what looked like falls. Very poignant as it turned out because my elderly mum has been down this route very recently. Perhaps the most distressing was an elderly person who clearly had Alzheimer’s. Being in A&E is stressful enough but with Alzheimer’s no sooner had someone explained why he was there than it was necessary to explain it again. He became distressed and his relatives were clearly embarrased by some of the things he would say and do as well as being in distress themselves from looking after him. Everybody felt for them and a very kind volunteer tried to care for him while the relatives went for a break and coffee. Suggest A&E prioritize cases such as this.

I guess I waited about five hours before the next intervention, a nurse gave me another assessment and agreed with the Bells Palsy diagnosis. Back in to the A&E pool though, so that I could wait to see a doctor for a proper assessment. Eventually my name was called and I was properly assessed by a doctor who made sure there were no physical stroke symptoms by testing all my arms and legs to ensure I was able to resist pressure against them. I was. Back in the pool again this time to wait to see an ENT (Ear, Nose and Throat) person but they were busy and so it was decided that I could come back to the hospital in a couple of days. Appointment made and nine hours later I was able to leave A&E. I’m fairly sure I was kept there so long to ensure I was in the right place if a full stroke had struck so for me the nine hours were well spent.

Little Jack Fullers Fish & Chips

I’d spent all day in A&E and decided to walk home (half an hour). This proved a good move as walking down St. James street in Kemptown (Brighton) is always amusing. Half way down I stopped to buy some battered sausages and chips (Little Jack Fullers fish and chips) and walked along feeling relieved . It felt like I had dodged a bullet. By the time I reached my local pub (POW) I was still eating so ate the rest outside with a pint. The end of a very long and stressful day.

The next day I had to buy eye drops and Microporous tape to tape my eye up apparently (I didn’t get around to this until recently (I’m not a perfect patient)). Bells Palsy is pretty strange, for a start no one really knows much about it or why it happens. Seemingly I could have been treated if I’d reported earlier but after that initial window there’s not much to do except put eye drops in to ensure the eye doesn’t dry out and to tape your eye shut at night for the same reason.

Ear, Nose and Throat

St. James Street

My ENT appointment came round and so I walked over to the hospital (might as well get some exercise from the experience), nice to see St James Street in the morning, all the coffee shops opening up for business and deliveries being dropped off. I get to the hospital and after a bit of wandering around discover ENT reception. A short wait and I’m in front of a doctor. He assesses me again and confirms Bells Palsy. After a check he advised me it was level 5 which is fairly severe. Wrote me a prescription for drops to be used at night and said I should attend the Eye Hospital in a few days. Time to walk home and more St. James Street. As I get close to The Royal Pavilion I realise I could use a cup of tea and a sit down to plan my next steps for the day so wander into the gardens and visit the little tea shop there. This should have been a nice moment but an anti vaxxer decided to bother us all playing loud anti vax discussions on some sort of music player in his pocket. He tried to engage with me and I told him to walk away (what I actually wanted to do was punch him in the face). I moved away from him and managed to have my tea and plan the rest of my day. On the way home nipped into Boots and handed over my prescription, unfortunately this didn’t work out as the Doctor hadn’t written my name on it (take note Doctors) and so they couldn’t fulfill it. On the upside I had just chatted to the doctor about my ears and he advised I put olive oil in them, while waiting for the prescription I discovered some olive oil drops! I know, exciting huh!

The Eye Hospital

The Sussex Eye HospitalA few more days pass, eye drops in eyes, olive oil in ears and its time to visit The Sussex Eye Hospital (my third department in the hospital infrastructure). More form filling and waiting room waiting and then I’m in front of a nurse. More questions recorded in the database about me. My history of being involved in cycle, motorbike and car crashes (I had several when I was young) suitably noted. Then she gave me a basic eye test and threw me back into the waiting pool. Not too long passed before I was fished out again and this time it’s a Doctor. Now for a full eye test, having had a few of these in recent years he was VERY thorough. Seemed to think things were ok but decided I needed to have blood tests and so was escorted away by a nice nurse who sat me down ready for blood draining. We had a nice chat and she set about trying to find a vein (had a little trouble), needle in and the blood letting begins, three vials full!

Back to ENT

A few days pass and its back to ENT, this time it’s for a hearing test. I settle down in the waiting room and an hour passes but eventually I’m ushered into a small room and then into a sort of sound proofed cupboard. What followed was one of the more weird experiences I’ve encountered during this saga. Listening for faint sounds and pressing a button whenever I get lucky and hear one! Test over, sit in the corridor and wait (I’m getting very good at this by now). Eventually I’m tracked down and before I know it I’m in another consultation with a nurse and doctor. Just a bit more questioning and the results of the hearing test (not really sure how that went except to say I don’t have the hearing of a young person apparently). I’m set free with the promise there will be a follow up appointment in a few weeks.

A pleasant walk home through St. James Street once again and another chance to visit The Royal Pavilion gardens and have a cup of tea at the tea shop. No interruptions this time so a pleasant few minutes before returning to my day.

The Royal Pavilion tea shop

A trip to the X-ray Department (that’s another one ticked off)

I decided to set out early for my MRI scan at the X-ray department of the hospital. Its an important appointment and I didn’t want to be late. As I’ve seen first hand in recent weeks they work hard and the least I can do is show some respect and be early. But before I could go I had to go to the bank (shock, horror). I had a twenty pound note in my pocket two years ago, I still have ten of it left! I needed to break it because I needed a pound coin and the bank was the only place I could think of to do it. They obliged. The reason why will become apparent.

A nice pleasant walk up St. James street followed. The colourful bohemian part of Brighton opening its eyes and blinking the new day in.

Arriving at the hospital I suddenly realised I had forgotten my mask. Having checked in at the main reception I picked one up and set off down the winding corridors looking for the X-ray department. By the time I found it I had my mask on and thought I was all set, nope. First thing the receptionist said is take your mask off and put another one on, I had to ask why as it seemed a bit wasteful. He informed me the usual mask has a metal strip running through it and I needed a special version that doesn’t (thinking of keeping it as a collectors piece). Mask duly replaced. Well, I say that but actually I had just sat down and was about to fit the new mask when a nurse called my name! Blimey I was expecting at least a half hour wait as I was that early. Mask on quick sharp and we’re off to the next room (I later worked out that because I arrived so early they decided to slot me in quick and try to get ahead of the schedule, poor guy behind me had to wait forty minutes while they did me, feel bad about that (only a little :-)).

Remember that pound coin? Well you need it to lock your locker because you need to put all objects on your person in it including your belt etc. That done, guess what’s next? Yep another injection (feel like a pin cushion at this point, everyone I know thinks I’m a junky because of the bruising). In this case they fit a line because they’re gonna inject you with something during the scan.

Before I know it I’m laying on the machine bed, the doc gives me some headphones to block out the noise and some radio to listen to (its gonna take forty minutes). Head is held tight by some contraption so that I’m going nowhere. If you are at all claustrophobic you needed to have run away screaming before this point because I’m now trapped and going to experience the full ride whether I like it or not. They fit a mirror above your eyes that works like those mirrors they had in the trenches during the first world war to see over the top. It enables you to see in the little office where the staff hang out. This is a little bit of reassurance after the machine closes over the top of you and you suddenly realise you’re in a tunnel, can’t move and being forced to listen to terrible local radio against your will.

The doc speaks to me from the little room but he has no idea its completely illegible. If the fire alarm goes and he forgets me I’m a dead man. Now for the scanning. There is an awful lot of juddering, buzzing, whirring, grinding, crunching and all the other words like that in the dictionary. The machine is clearly going up and down my head and scanning away. If you want to know what its like listen to a Laurie Anderson or Yoko Ono album backwards. Every once in a while the tone would change, occasionally the doc would say four minutes or six minutes (That was all I could work out). I think he was telling me the duration of each test.

Not a pleasant experience, I closed my eyes mostly and just listened to the utter nonsense that local radio mixed with MRI scanner makes. Occasionally I opened my eyes to look in the mirror and reassure myself there was indeed a reality outside of this experience. This is perhaps a little taste of what tortured prisoners experience when denied control and forced to endure.

Eventually the scanner moved from over my head, the doc took the pillow from under my legs and asked me to lift my head so that he could remove the headphones. At this point he started explaining things to me without realising I hadn’t got a clue what he was saying, my ears were now blocked and my mind was a thousand miles away. I mustered the power of speech and explained I couldn’t hear what he was saying. He raised his voice a little and got closer and I came back to reality. I picked up my shoes from the floor and stepped outside the room. Sat down again and started pulling myself together. Doc said I’d find out the results later, the nurse removed the line from my arm, I reclaimed my worldly possessions from the locker, had a little chat with the unlucky guy behind me (I didn’t tell him I’d pinched his spot) and pressed the green button that let me out of the room and back into the hospital corridor, suitably dazed and confused.

Back outside I head for St. James street and begin the walk home. More fun watching the locals do their day. One tiny café seems very popular and people queue on the street outside just to get their coffee as there’s no room inside.

Eventually I cross into the Pavilion district of the city and so head for the pavilion gardens for my now traditional reward for being a good boy and doing what I am told. As I didn’t have breakfast first thing (no time) and it was now lunch I splashed out on a bacon sandwich to go with my mug of tea! I take my seat with all the other old boyz, each takes a table around the edge of the café space and so can observe without being disturbed. Most bring a newspaper, not me, I’m not a permanent fixture and so am an alien observer in this scenario. The women also attend but they take seats in the middle because they meet other women and chat, the men almost never meet anyone they know except the owner of the café (who likes to talk football, or perhaps he just does it for them). Then a rather wonderful thing happens, the pied piper of Brighton arrives. He has a rucksack and carrier bags with him and the pigeons all swarm all over him as he walks onto the grass. He throws them food and they peck away. After they’ve eaten they form a murmuration in the sky and fly all around my head and across the grounds around me. The Pied Piper sits down and then the squirrels come down from the trees and start wandering around. He begins throwing them nuts, which they grab and disappear with. A squirrel comes over to me and looks at me like where’s my nut mate? I didn’t know how to explain that I didn’t have any in squirrel. They keep us amused for a few more minutes before quietly blending back into the landscape.

Having looked up into the sky at the birds I noticed the beautiful pattern the trees made against the sky. They reminded me of an art teacher from Ipswich Art School (Mark Miller) who used to tell us all that we should look at the space between things not just the things (If you follow his link you will see excellent examples of this. Instead of painting a sky and then painting a tree over it he paints the spaces between the branches). So I ignored the branches and looked at the wonderful pattern their presence created in the sky. A more extreme contrast you could not draw from the MRI scan to this beautiful, peaceful café in the centre of Brighton. I urge all my Brighton friends to stop for a mug of tea one day and sit round the edge with the old boyz.

I finished my sandwich and mug of tea and reluctantly walked back into my life.

The Eye Hospital again

Early start today, straight out of bed and on the road to the Eye Hospital (early appointment). Pleasant enough start to the day and always nice to walk up St. James street as everyone opens their eyes for the first time in the day. I managed to over shoot the turn for the Eye Hospital and so ended up walking around it before finding the entrance. Only just sat down when I got called by a nurse and he carried out a basic eye test and seemed happy. Sat me down in a corridor to wait for the doc. Must have been a half hour wait before he showed up and its time for him to check how my right eye is doing. He’s happy there is no damage and we chat about my progress and he agrees that the worst of it seems to be behind me. He asks about my brain scan and I tell him I’ve not heard so he brings up the scans on the computer and I get to see my brain in all its glory. He can’t see any issues and seems happy with them, all very normal. We chat a little about Bells Palsy and I ask him if there is a connection between the brain and Bells Palsy and this makes him sit up a little and ask if I’m medical (not even slightly), I’m happy my question hit the mark 🙂 He’s happy with how things have gone, says the fact that I have recovered proves it was Bells Palsy and says I can be dismissed from the hospital, so that looks like it for the Eye Hospital at least and maybe the rest of the hospital too, we’ll see.

Before I know it I’m wandering down corridors until I find the main entrance at which point I pause because its raining outside. Coat on I venture out in to the rain and start the journey across Brighton. The sky seems brighter on the horizon so I’m hoping that comes towards me quickly so that I can have my now traditional mug of tea at my new favourite café. Even in the rain there is a queue at the café I mentioned earlier on St. James Street, must be good coffee! When I get to the pavilion and walk across the gardens to my café there are no tables out and the rain is still falling but the blue sky is almost in place over head and so I go up to the counter and ask if a table can be put out as I believe the sun is about to arrive. The staff are nice and oblige my whim so I order a tea and a bacon sandwich to make it worth their while. As I sit down the rain is still falling but actually the sky over head is blue so I persist on the basis its about to stop which after a short while it does. What unfolds before me is a wonderful view of the pavilion bathed in sunshine and (as it turned out) a rainbow over head. I didn’t see the rainbow but have seen pictures since. Eventually I’m joined by a fellow customer and a few more tables are put out. In the meantime the birds are busy flying around whilst on the ground the squirrels are very busy wandering around. One came over for a chat but I don’t speak squirrel. Next came a couple of ladies who sat together for a chat (see above, the men sit alone the women socialise). Its a wonderful oasis of peace and tranquillity and once again I struggle to leave but its time to go home and maybe just maybe that’s the end of my Bells Palsy saga!