And now a brief aside from the world of CLIPPERS for some reflections on hospital life. Although I've worked in and around hospitals for much of my career I had never before been admitted to one as a patient. So all of a sudden I found myself as an in-patient for several days of unspecified tests and facing an uncertain outcome. So how did I feel? Bloody marvellous as it turned out.
Relief
The thing is I'd had worsening double vision for two and a half months, balance and coordination problems for a month, a numb face and fingers and a strange tightness around my ribs. By the time it got to a week before admission, everytime I woke up in the morning I noticed some slight worsening in my condition like tingling a little further up the limbs or ribs a little tighter. The in-patient admission date was when I would be taken notice of, investigated and sorted out hopefully. It probably helped that I had convinced myself I had
Multiple Sclerosis. If I wasn't so naive I would have been far more concerned about the outcome than I was already. Which isn't to say that MS is a soft option at all - it just seemed like it at the time compared with some of the other possibilities I had read about. I was also being admitted to one of the best specialist centres in the UK (and the world) and say what you like about socialized medicine, as a long-standing tax-payer the good old
National Health Service would provide and cover as complete a range of investigations as required with no questions asked
Battlefield
I thought I would arrive to find specialist doctors queueing up to investigate and treat me. Instead the ward was packed with visitors, the carpenters were in, the nurses were rushed off their feet and I didn't have a pillow. Fortunately this turned out to be the most chaotic I ever saw the ward and the usual pace was less fraught. Fairly quickly I found that my stay in hospital was going to feature long periods of inactivity with brief interludes of excitment to break up the day. These were variously, meetings with my medical team, meal-times, visitors, scheduled investigations, unscheduled investigations (or at least ones I hadn't been told about) and the dreaded "obs", blood pressure, blood oxygen levels and heart-rate measured many times a day. (In fact at one stage my neighbour woke up at 6am to find his blood pressure being taken while he was still asleep!).
Bathroom Lottery
Despite rotating around the ward and changing twice daily the nursing shifts were incredibly organised and always came round to introduce themselves at the shift start and make sure they understood my needs. The two most important questions were "Are you mobile?" and "Are you self-caring?". Being able to answer "Yes" to both of these meant I could wander about freely and didn't need assistance in the bathroom despite being ataxic (clumsy and swaying when walking); I was still quietly relieved about the number of helpful hand-rails installed in the bathrooms though. There were many less able people in other parts of the ward who needed various kinds of help. On a purely practical note I quickly realised that using the bathroom after one of the patients who wore different pyjamas every time they walked past was not a good idea. It's not their fault but there was a good reason why so many pyjama changes were necessary. A full-time cleaning team spent all day dealing with problems around the ward but they couldn't be everywhere at once.
Routine
In hospital it helps if you are the sort of person who can keep themselves amused. I'm quite good at that, in fact my wife is constantly amazed at the number of things I can find to amuse myself at home. This skill was handy for dealing with the dead-time in hospital but I still reached a limit eventually when I'd had enough of reading, music, soduko and crosswords. The days were structured around meal-times, observations and investigations. More significant investigations, especially those which required preparation and/or transport off-site came with plenty of warning. The less significant investigations I found out about when a porter with a wheel-chair appeared by my bed-side. There was also a guarantee to see someone from my medical team every day which stopped me feeling forgotten on days when not much was happening. Catering was quite varied with a reasonable selection of dishes. All the main meals were steam (re)-heated which was OK in general but made for really soggy fish and chips. After two weeks I switched to the Asian Vegetarian menu for evening meals and had great curry every night brought in from an outside supplier; I probably made myself incredibly unpopular by stinking out the bay though.
Fellow Patients
For someone who has worked in neuroimaging, my fellow patients were an interesting bunch. The average stay was about a week and by the time I was discharged after 4 weeks I was very much the "old man" of the bay. Even the nurses started greeting me with "Why are you still here?" when they came back on shift; I was one of the few patients on no medication at all for the first three weeks, was mobile and looked comparatively well. My other fellow patients had a variety of conditions including
cluster headache,
Parkinson's disease (treated with
Deep Brain Stimulation),
Myasthenia Gravis, autonomic failure, chronic leg numbness and
sarcoidosis. Without a diagnosis for much of my visit I didn't have anyone to compare notes with although several people with different diagnoses had similar or overlapping symptoms with mine. Another long-term patient told me I must be terminal as I had been in for so long and a double dose of morphine was the way to go. I tried to point out that we're all terminal one way or another - it's just a matter of time - but he didn't listen.
Escape
Probably the single thing that saved my sanity was being allowed out at weekends. No investigations are done then so the wards are quiet. If you don't need medical supervision and are judged fit enough to be signed out then a couple of days respite are the reward. I did spend the last two weeks in hospital without a break as I started intra-venous drug treatment over the intervening weekend. In the last week I got moved to a side-room on my own normally reserved for the infectious, the disruptive or the terminal. Maybe they were trying to tell me something? Whatever the reason, this room came with an en-suite bathroom which was enough to make up for a few days isolation. Bliss.
