How did it all begin? Well, a few years ago I was diagnosed with Ocular Myasthenia Gravis, which causes muscle weakness or fatigue in the eye, resulting in possible double vision and a drooping of the eye-lid. This can spread to both eyes, and later, in the majority of cases become full-blown Myasthenia Gravis, which can lead to swallowing and breathing complications; even walking difficulties. Coincidentally, but totally unrelatedly, I also have long-standing symptoms of Horner Syndrome, which is why my right eye-lid droops.
A long and heavy dose of steroids eventually sorted out the one eye that had been affected, and in consultation with consultant Dr. Bennetto, the steroids were gradually reduced from 60mg a day to 5mg every other day. A check-up 3 months ago came with a recommendation to carry on with this dose since it was clearly working well.
That is, until three or four weeks ago. I’m not sure what I first noticed that was slightly different, though I do recall eating some fish and chips for lunch in Keynsham and thinking it was surprisingly hard get it all down. A few days later, though, a visit to Temple Meads Station to film a steam train raised some concerns. I was placing my left (and best) eye to the viewfinder and occasionally seeing nothing. However, I was looking in the direction of the sun, so wasn’t that concerned, and on returning home my eye looked OK.
Over the next few days I noticed I was finding it more difficult to swallow food. It didn’t seem to be a problem with my throat, it was just that after chewing whatever it was, the physical act of swallowing seemed hard – almost as though I’d have to have a few gulps like swallowing a pill that won’t go down. Also one side of my mouth seemed almost dead – as though it had been anaesthetized – so I would find traces of food there that hadn’t gone any further.
The left eye had now started to droop so I followed Dr. Bennetto’s advice and began to gradually increase the steroids until I was on 5 mg a day. It didn’t appear to help so I arranged an appointment with my local surgery to see if they would recommend further increases.
The crunch came before the appointment, when I attempted to lunch with my friend Dave Howell and the soup took me ages and I could barely manage a few mouthfuls of Shepherd’s Pie. I also noticed that when showering I couldn’t seem to close my eyes completely, as I wanted to; rinsing out after teeth cleaning was awkward and smiling was becoming difficult – I just couldn’t form one.
My appointment was put back another day because of staff sickness, which didn’t help. The strong sunlight was making any kind of travelling a big problem because I could not look where I was going and focus properly. Only one eye was functioning more-or-less normally but I was unable to shut the other one without holding it shut (I’ve never been able to open or shut one eye at a time) which was clearly not practical.
Doctor Charlie was quite alarmed at my symptoms and the possible breathing difficulty implications, and as he had no expertise at all in this specialist subject, arranged for immediate hospital admission. This in turn alarmed me a little, my last hospital stay having been about 50 years ago. It took him ages to get somebody at the Eye Hospital to answer the phone, and when they did it was never the right person, but he stuck to it, after warning his reception team he might be occupied for some time.
I was allowed to return home and prepare for a quick call back from Southmead Hospital which duly came as I was walking in the door. A bed was available and they’d expect me when ever I was ready.
A couple of hours later, having made several quick necessary arrangements and packing a bag of various items I hoped would be appropriate, I was on the no. 76 bus to Southmead. It was a short walk from bus-stop to the hospital, a walk and a building with which I was already familiar because I had previously popped in occasionally while waiting to change buses at the terminal there.
I also knew it would be staffed by volunteers because I’d witnessed them in action. This was just as well because looking at the map there was almost impossible for me in the full glare of light. I took a lift to the 2nd floor and was directed to bed (actually room) 62 in Ward 6B, Neurology.
I was told by the ward manager that the nurses were all in a meeting but I’d be seen as soon as possible. In the meantime I inspected the room and inadvertently pulled the emergency cord in the bathroom, believing it to be the light switch!
Nurse Emily soon arrived and explained a few things to me. Checking-in was initially a problem due to them having an address I left 5 years ago – why? Asking me to complete a long and complex form seemed a little harsh since I could barely see to write, but I struggled through gamely. Emily was very nice but I foolishly (as it turned out) said I may have lost some weight recently because of the swallowing problem. She related this to various other visitors I had; one of whom informed me this meant I would have to have a tube inserted! Emily told me she wasn’t senior enough to perform this task (which I would not enjoy) but somebody else would. She had soon finished her shift, and was replaced by a night-nurse who was not a permanent member of the Neurology staff.
Next thing I knew a chap was knocking at the door with a wheel chair to take me for a chest X-Ray. I told him I was perfectly happy and able to walk, but he said H & S rules would not allow this “in case something happened to me.”
We had a long and exciting push and ride to X-Ray which seemed about half a mile away. It evoked fond memories of an edition of Whatever Happened to The Likely Lads, when Terry pushed Bob at great speed along some hospital wards, resulting in a collision with a tea urn and a leg in traction! Nothing like that actually happened, nor was the result of the X-Ray ever disclosed, but I was soon back in my room.
Those of a nervous disposition or about to eat might like to skip a few lines at this juncture!
The night nurse explained a feeding or energy tube would be inserted into my stomach via my nose, and I would feel some discomfort at first. You bet I did, though it was nowhere near as bad as having an endoscopy.
She then had to “test the waters” via a syringe, further explaining that she had to make sure the tube was in my stomach not my lungs, and the way to do this was to draw up some “aspiration” via the syringe and tube. It didn’t work.
She decided to have another go and withdrew the tube (slightly less discomfort) and re-inserted it (more discomfort). Again she could get no aspiration or inspiration, so decided to ask X-Ray if they could “do the business” again to be certain it was in the right place. This is important because they couldn’t risk pouring nutrients and drugs into my lungs. However, X-Ray dept. weren’t too happy with this because it was now after midnight, so she decided they would postpone my overnight feed and reconsider in the morning. The nurse said she had rarely witnessed such calmness during the insertions of the tube, but in truth I was too petrified to speak!
I got very little sleep in the tiny bed, and feeling the tube inside me, but around 2 o’clock I became aware of a cold damp sensation in the area of my back and shoulders. I struggled up and realized that somebody had “left the tap on” as regards my tube, and there was now no question of the final location of the tube since I was lying on my stomach contents.
I buzzed for room service (nurse) who changed the bed and got fresh pyjamas but said the hospital would not wash the ruined ones, because they were mine, not their’s!
The next morning I met Nurse Kelly who became my friend and guide over the next few days. She still needed to make sure about the tube, though, and after getting me to drink water, fruit juice and lying on my side, managed to get some aspiration, which tested OK. Apparently it has to be a certain score to qualify.
Kelly also asked me if I’d had a line put in (something I’d often heard on “Casualty” but never really understood); but when I said “what’s that?”, she replied, “that’ll be a no, then”!
I was then visited by a succession of staff, amongst who were my consultant, Dr. Bennetto, and his two assistants; a Speech & Language therapist; a Nutritionist, the ward Doctor; a Physiotherapist;; and, finally a posse of medical undergraduates – one of whom was allowed 6 minutes to examine me, after which they would all critique her. This was a little harsh on me, I thought, since I was already exhausted, had this tube in my nose and I’d answered all these questions several times already, and no, I cannot raise my eyebrows!!
The speech therapist returned later and gave me an eating test — Weetabix with milk. I managed two or three swallows and that was that. Pre-Mashed Texture D diet for me. However, she also gave me a speaking test, complimented me on my voice and asked if I sang — that’s something that’s never happened before.
All the various examinations were tricky because I had problems focusing on my examiner and they all seemed to stand in front of a window, which meant I was looking into the light. When somebody’s talking to you, you want to be able to look at them. Not only that, try sneezing, or blowing a running nose with a tube up it. And try going to the bathroom, shaving, showering or undressing when you are connected to a feeding station.
Anyway, the HCAs (Health Care Assistants) were all very helpful and I coped. Basically I was in a section of eight rooms looked after by a nurse and an HCA, but the ward had three other similar sections and staff. The hospital is a huge place, consisting of at least three lengthy buildings on several floors. My room looked out over a long walkway, with a constant flow of people of all kinds – some of whom appeared to be on outings. It was like a busy shopping street, though shops were in short supply. There was a couple of musical performances during the weekend, but the double glazing made it almost impossible to hear — looked good, though. One of the groups was the Gospel Generation Community Choir.
From my bed I could see various staff on the move up and down the ward all day long, and often patients were being wheeled in and out, either in chairs or on beds. The nurses push around some kind of cabinet containing various medical supplies, and there’s also a mobile blood pressure machine, which constantly beeps, horribly. The other noise I soon became accustomed to came from the buzzer facility in each room via which one could summon assistance from a nurse or HCA. Of course I rarely used it but it seemed everybody else did!
The catering team were marvellous and offered hot drinks in addition to the food, which had to be ordered a day in advance from the menu you were allowed at the time.
Doc Bennetto decided to double my steroids dosage and also prescribed Pyridostigmine Bromide several times a day. There were various other tablets and injections required daily; blood tests; breathing tests (every four hours), blood pressure tests, blood sugar level tests – you name it, I had them.
At one point during the various examinations, I was asked to shut my eyes as tightly as possible, and then prevent them from being opened. I failed this test utterly and it was at this stage I really began to appreciate something was badly wrong.
That evening, Ray, my neighbour, suddenly entered the room and approached me with his mobile and charger. I started to tell him I was no expert but he ignored me and plugged it into the socket behind my bed! I explained that this wasn’t his room and although he was convinced he was sitting on my bed just a few minutes previously, luckily an HCA swooped and guided him back next door. Apparently he got confused occasionally.
On Friday I could only manage some kind of soft vanilla dessert, but on Saturday I was given my first (pre-mashed) meals especially chosen for easy swallowing. A little like baby food, I imagine Unfortunately, because I was also getting the tube feed all night, I wasn’t really hungry, especially for three meals a day, which I rarely eat even at home. However, the tube was useful for the drugs which could be crushed and sent down with water on schedule, via Kelly or the night nurse.
Kelly, whose shift was from 7 a.m to 7.30 p.m., was an absolute legend, constantly on my case while also dealing with other apparently more complex cases; mostly bed-ridden patients. Of those, I only ever really saw Ray, but I also heard Martin, who went berserk for four solid hours starting at 2 a.m. on Sunday. I later discovered he was a slightly-built man in his 50s or 60s, with a mobility problem, but at the time he was quite frightening.
Clearly with some kind of mental difficulty, he constantly shouted at the top of his voice; threats to kill, accusations of bullying and pleas for help, and vocally abused the staff in the worst possible way, keeping me awake all night. Night nurse found it quite amusing that he ended up being driven up and down the corridor by an HCA in a buggy, hoping to get to Brazil, but I did not. I had just dozed off around 7 when I was aware of somebody exiting my bathroom. It was roaming Ray! He wished me good morning and said he wanted to get dressed. Seeing him heading in the direction of my own clothes, I managed to persuade him his room was next door.
Of course, I fully appreciate that patients like these are in a most unfortunate state and hardly responsible for their actions; neither can the nursing staff do much about it. However, at the time I admit I was only really selfishly concerned with my desperate need for sleep, and if I could have left the ward I would have done.
I was clearly out of my comfort zone in many respects, but especially as regards the bed and the tube. I was being woken during the night for breathing tests which I found difficult at the best of times, with the tube proving an encumbrance. After another day of eating what I didn’t want to eat and actually being unable to finish my ice cream (definitely a first), Kelly said she would speak to her nutritionist friend with a view to me coming off the tube feed.
The speech therapist returned, impressed by my consumption to date, and tested me with a bowl of mixed fruit and some biscuits. This time I performed quite impressively and was upgraded to Fork Mashable Texture E. I was checked daily for any signs of muscle fatigue in my hands, arms, shoulders, head and legs, but was reassuringly fine on each occasion — almost pushing over a night nurse one morning!
Monday first thing I struggled to eat my porridge – it seemed liked the old problem again — but afterwards I realised night nurse had not given me the PB tablet beforehand. This was unfortunate as Kelly had left specific instructions, but the night staff are rarely based at Southmead and not necessarily familiar with MG. They have a difficult job coping with eight different patients they’ve probably never seen before. As for me, I was fed a cocktail of crushed drugs via my tube at around 7 a.m., so was in no position to judge what I had been given.
Anyway, the nutritionist agreed to release me from tube feeding if I agreed to drink three bottles of high energy drink a day. I was also weighed in a chair for the first time in my life (88 kilos), and Monday night was peaceful with only one brief outburst from Martin. My breathing tests readings improved markedly after the tube was removed. Kelly decided to claim this as an important new discovery for the Neurology ward!
Incidentally, any boredom from my stay was slightly alleviated by the presence of a TV. It was useful, but curiously seemed to have such an old setup that it only contained about 20 channels, just the very basics, including the long defunct BBC3. Interestingly, there seemed to be no kind of “time for bed” regime; it was left entirely up to me.
On Tuesday Dr. Bennetto came calling and found me greatly improved. I could swallow easily and my left eye, though not perfect, was clearly better. He felt I could probably complete my recuperation at home, provided I was confident of managing on my own – which I was.
Kelly explained I would not be able to leave until all the medication I needed had been acquired and this would take several hours – it did. In the meantime I was looking forward to lunch for the first and last time in hospital, and the indefatigable Kelly had already ensured I taken some PB an hour before. When it arrived it was Chicken in Gravy, with potatoes and various other veg. It disappeared rapidly, as did the two desserts, and it’s hard to describe the feeling of elation that eating was now back to normal, as far as I could tell.
An elderly woman visited and said she wanted to draw blood. I longed to say “How disgusting” in my best Cary Grant impression, but felt she might not appreciate it. I did find a vein for her, though, since she was struggling a little.
Kelly talked me through the strict medication regime I must now adopt, which more-or-less means taking a PB tablet before doing anything, from getting up to going to bed. I also have to continue with steroids, calcium tablets, something to avoid possible side-effects, plus the 3 juices per day. But at least I can see and swallow!
She also said MG is very rare but she had treated 5 cases herself. She admitted to having OCD, but kindly helped with a suggestion about the design of the cover of our John Barry Seven book – I could tell designer Ruud was thrilled with her assistance! When I left she was already talking to a new admission, but she arranged for an HCA to help me down the stairs to the bus stop, and I was safely home in 30 minutes.
From start to finish the staff at Southmead Hospital could not have been kinder or more helpful. When I was commiserating with Kelly about her 12.5 hour shifts, she said “don’t feel sorry for me; I knew what I was in for when I signed up”!
The hardest part starts now, as I have nobody telling me it’s time to take this or that, but once I’ve done a few days I’m sure it will become a habit.
It was an interesting experience, to be sure, but hopefully one I will not have to repeat. Thanks again to all the wonderful staff at Southmead Hospital.