Love and Liberty

2016’s been a bloody awful year for anyone apart from fascists, and I’m not trying to say I’ve had anywhere near the worst of it. I’m just aware some people have been worried about me in the last few weeks, because my health’s been extremely worse than usual. So the main thing I should say is: as when I was hospitalised with the same thing two and half years ago, while it was intensely awful, it wasn’t life-threatening. Just, like all my other miserable chronic conditions, stopping any sort of quality of life. I was in hospital again, I’m out again, and I’m told it’ll take at least a month for the bonus pain and other suffering to settle down until my health is back to Alex-normal. Which is pretty crappy but which I can cope with some of the time.

After my worst ever year for health and – not unconnectedly – for writing, I made a determined effort in November and published a few blog posts. Even if they were mostly repeats special editions. I finally got a little mojo back. What could possibly go wrong?

The Gory So Far

When I ended up spending an entire holiday in hospital in mid-2014, I wrote about it a month later when I was starting to recover. Reading it back, it was a pretty good piece, though obviously deflecting all sorts of awkward questions and dark places with humour. I’m not at the stage where I can write anything like that yet, so if you want some of my better work, read it again. This is going to be more of a bulletin from the pit and less diverting.

Here are a sanitised few of the main details, then. I have several chronic health conditions which are there all the time. The biggies have been going for about two decades. Most years I seem to get a bonus one or two, which if I’m lucky will be temporary, but rather in the health equivalent of standing on a narrow plinth being given another cabbage, I’ve collected quite a few more permanent ones over the years and as a result had to stop doing most of life. Sometimes I can cope, most days I can’t do anything more than just about cope, and rather than rattle off the list (I keep four pages of prescriptions on my phone to show at all my hospital appointments) I have long-term things wrong with me literally from my head to my toes.

So when some other health problem hits me, it tends to hit me very hard and it takes me a long time to recover. 2016’s been my most incapacitated year of my adult life. It started with my being clobbered by various viruses in concert for rather more than the first three months of the year, so I went from the usual ‘didn’t get out much’ to ‘barely got out at all’ and haven’t really clambered steadily as far as Alex-normal for more than a week or so at any time since. None of this helps any of my usual conditions, none of which take a holiday, and while the rest of my psyche can’t find eagerness for any part of life my depression feeds eagerly on every physical downturn. Several other extras hit me in between, knocking me out completely for several shorter patches, one infection starting in June lingered about three months and half a dozen prescriptions, then came back again, but hasn’t been especially extra-painful most of the time, so, hey… And then came the hilarity of November.

Among the few things I’m grateful my body holds up on are that I don’t routinely get high blood pressure, and that while plenty of the prescriptions I’m on have several awkward side effects, I’m not actually allergic to any medications. Until last month, when I suddenly had a massive allergic reaction to an antibiotic I’d had several times, and when the tests I’m always having started to show my blood pressure soaring. The doctor was concerned enough that this was becoming a thing that I was booked on December Seventh to have a device fitted to monitor me for twenty-four hours. Of course, I’m now waiting for that to be re-booked, because it turned out I couldn’t make it to the surgery that day while interned in the Royal London Hospital.

“From what I can see of the people like me
We get ‘better’
But we never get ‘well’”

Paul Simon – Allergies

A&E

After a few ominous days of trying to ignore the signs, I woke at three in the morning on Thursday December First with a great deal of pain and dauntingly familiar symptoms. By five, after several different painkillers and failure to get back to sleep, I woke my long-suffering husband on his busiest day of the month and asked him to drive me to Accident and Emergency a few miles away in Whitechapel (in part as, though I thought I knew what it was and that was bad enough, I’d also been told before that the same symptoms could mean something very much worse). At least this time I decided to act much earlier in the condition and went armed with a clinical record I carry on my phone and can recite with the speed and accuracy of a soldier collapsing prone to attention with name, rank and number, which I suspect helped the whole thing to be pretty bloody awful but not reach quite the appalling crisis of last time.

One plus, at least: it turns out Thursday at 5am isn’t one of the busier times for A&E, so it wasn’t long before I was in a gown and a cannula and being SirDigbyChickenCaesared around on a trolley. No, there was another bonus, too: the cheery doctor who was the most reassuring part of the whole experience (after my beloved Richard). So he told me I was very ill, and was absolutely right to come to A&E, and that though he was giving me some antibiotics now and sending me home after five hours, it was quite likely things would get worse instead and that, if they did, I should come right back to A&E as first point of contact rather than trying to wait anywhere else in the system. But he was cheery while recognising my pain and fear, and he actually listened to me, and he paid attention to my clinical record, and he kept me informed, and he told me what I needed to do. I won’t go into later experiences in detail, but let’s just say each one of these attributes is a rare and precious jewel, so I wish I’d caught his name to thank him.

Diversion: Putting the F in TFL

At this point I would like to thank Transport For London for their imaginative rebuilding of Whitechapel Station. Since the Royal London itself was rebuilt, there is only one lane leading towards the nested north entrance of the hospital, but at least it was planned to face the entrance of the Tube Station across the road, so on my frequent visits for tests for all my Alex-normal chronic conditions all I and other patients had to do was go up two flights of stairs and through to the hospital in a direct line.

This year TFL has had the genius idea to move the station entrance to such a remarkable extent that, although the train I get out of still emerges directly below the pavement facing the hospital, anyone entering or leaving – a sick person, for example, one who might be in considerable pain or have difficulty walking – now has to go up several extra flights of stairs, walk the whole length of the station west and some way more, then leave at a point way back from the road, then walk to the road and round the corner and up the road before being able to cross the road into the narrow cleft to the hospital entrance. This adds a minimum of five minutes – as timed when late for an appointment and running – but more usually an extra ten minutes’ walk or much more for the more significantly invalided. Good show, TFL! Perhaps you could ask your staff to look out for anyone clutching a hospital letter and give us a good kick down all the additional stairs as a bonus.

Hospital Again

After two days of drugs, pain and exhausted attempts to sleep, obviously I had to face up to both feeling and very visibly being very much worse. I strongly suspected I would not just be sent away with stronger drugs this time, so packed such essentials as my tower of prescriptions and several books, as well as loading my phone with more books, Doctor Who stories, an extended playlist I’d prepared after the last time, and of course that still extraordinarily accurate and topical documentary Carry On Doctor. Plus recharger and plugs. As it turned out, I mostly read JP Martin’s Uncle tales, which I’d recently found as eBooks many years after consuming them at my school library.

On the Saturday afternoon Richard drove me back to A&E. I was there five hours, and I was not happy. This was a busier time and the cheery doctor only passed me in a corridor. There are few things so alienating and afraid as hours alone in a hospital room: my condition may not have been as bad as in 2014, but the communication was far worse. No phone signal in the deep places, either. When they eventually decanted me into a chair and wheeled me round and round and up and up to be admitted into a proper ward, somehow I wasn’t grateful for the excessive speed after the long wait – being dragged and bumped behind an orderly so that I received the maximum excessively painful jolts and couldn’t even see where I was going. I just managed to read the ward number as I whizzed past, but wasn’t helped by the sign headed “Visiting Hours” without any times marked on it.

And so I ended up laid out in a small ward so deep inside the hospital that not only did it not have any windows but that the nearest windows were along enough tangled corridors that I didn’t see natural light again until the following Thursday. This did not have a cheering effect. The evening wasn’t helped by having had literally no food all day and told that I’d missed the evening meal so all they could give me was a packet of biscuits, nor by it taking several requests and an hour to find out when visiting time was. I was finally able to send my distress call to Richard after it had officially finished, but he stayed until they threw him out, for which I was even more grateful than the half-hour in the middle where he legged it out to the nearest supermarket for their saggy surviving sandwiches. Which at that point were awesome (and my husband far more so).

I don’t really want to talk about the next four days. Richard came every minute allowed – and considerably more – that he wasn’t at work. He is the most wonderful man. Be nice to him. He’s frazzled and he needs it.

Thank you, too, for all the people who sent good wishes via his FaceBook, to several people who sent very kind messages (and I’m sorry I replied to so few), and to a friend who came to visit and was extremely nice even when I was at one of my worst points and was shakily and soggily poor company (not least for asking if I could cope with a visitor and then asking if it was time for him to go so I could be alone with Richard). Thanks also particularly to Nurse Tracy, who ran the ward at night over the weekend and was really good at it – the medical side, the reassurance side, and even the little things like bringing replacement gowns and wash-kits before you think to ask for them. If they don’t do that, ask for them. Which brings me to…

Things To Do In Hospital

If you ever end up in the same sort of situation, the most important thing is to fight to stay informed and to ask questions. Particularly if you have a medical history that you know and that they’ve not read (I’m still impressed that, along with two antibiotics that I’m still taking and still being knocked out by, one of the painkillers I was discharged with explicitly warns against taking if you have not one but two of my chronic conditions and, when a doctor suggested I risk it if I really needed it – obviously I really needed it – had as bad an effect as you might imagine).

If a doctor seems to contradict another doctor, ask and give evidence-based back-up to your questions. They probably won’t listen to you, but there’s a chance the next one will when they contradict again. I’m glad that they hit on the right treatments eventually, as a week after discharge I’m showing slow but noticeable signs of improvement, but when you have a different medical opinion and complete reversals every day you must pay attention, because there’s a strong chance you’re the only one who is. My particular winner was the specialist who came up with the best antibiotic but at the same time seemed fanatically in favour of a medical procedure that I’d previously been and was subsequently told would be a disaster. He was also the doctor who told me with utter certainty what had caused my condition and simply repeated himself in the most dismissive way possible when I asked how his off-the-peg assumptions squared with actual individual medical facts and clinical records that not just contradicted him but proved what he was saying was impossible, including those from two and a half years of follow-up tests and operations by his own department. I am not a trained doctor, but I am at least able to grasp that an operation in January 2015 and the continuing complications from it may indeed be among of the banes of my life, but they did not cause the condition that first hospitalised me in July 2014 and to which they were themselves all consequences. Perhaps I shouldn’t have been surprised by a doctor whose firm and unalterable convictions were based on time travel, but I wasn’t reassured by him.

If you’re at your lowest and weakest and most in pain, if two other patients strike up a loud and extended vitriolically homophobic conversation (one led it, but the other went along), you should probably do something. But I’m f**ked if I know how to summon up the spirit to do it rather than just both feeling more vulnerable and isolated than ever and feeling grateful you’re isolated in a corner constantly inside curtains and can try to pretend you’re not in the same room.

Cannulas are the work of the devil (they’re a sort of tap fitted into you so they don’t need to find your veins with fresh needles every few hours). I find they bruise hideously in the hand and much less so in the arm, but both will be painful all the time and far more so when they snag on your gown or as you turn in fitful sleep. When your blood pressure is measured every four hours of day or night, learn not to be too disturbed because there’s nothing you can do when each new nurse says, alarmed, “Did you know your blood pressure is very high?” and when it starts flashing and saying “Emergency” on the readout be patient when they switch to the other arm in the hope that reading will be a crucial few points lower and they don’t have to call a doctor. But especially, if your cannula is in the crook of your elbow, tell the nurse loudly every time and when they don’t listen, push the blood pressure armband further up your biceps before the pressure closes on the needle in your arm and risks breaking it.

If you’re cold, and in an air-conditioned ward with only a thin gown and a thin sheet you probably will be, ask for a blanket and keep asking when the nurse’s face suggests you have asked for a statue of yourself in an ermine wrap. If you are still cold, ask for another one. If you are to be trundled on your bed to another floor for tests, ask for blankets in advance. Assume that you might, for example, be about to be left in a much colder corridor for an hour and a half while waiting for the scanner. Whatever you are in for will not be improved by catching a chill. This might mean, for example, that you are shuddering uncontrollably while the doctor who’s just peeled back your gown and gasped, “Oh! That looks very painful” is trying to keep a steady hand, and that, for example, your temperature and pulse might rocket that night and the nurses have to give you extra medication while you ache appallingly and sweat your entire bodyweight.

Most importantly of all, fight your British instinct to answer ‘Are you feeling all right / better / comfortable?’ with ‘OK / fine / not too bad / embarrassed shrug’. You must gaze steadily at the medical professional and say the words ‘Very bad. I need some morphine.’ Or you will remain in an even greater level of pain than you will be when stuffed with painkillers.

Also get up the bottle – especially if the doctors have ticked you off for not drinking enough fluid after no amount you drink can make up for your massive dehydration after another night pouring sweat on a plastic mattress – to ask for more water and keep asking in the three hours after breakfast in which the jugs have been taken for cleaning and the nurses believe they will return instantly by house-elf while patients discover replacements will only arrive at the next meal. Unless you doggedly keep asking.

Doggedly keep asking.


And that’s it for what I’ll say. I’m out. I’m hoping not to go in again. I’ve had two short walks since I was released and both were so painful and exhausting I was knocked out for a couple of days afterward. I am still in a great deal of pain, somnolent from all the pills, and in either a foul or just a hopeless mood, and very grateful that my husband somehow puts up with me. My health has now been increasingly poor for twenty years and after this year I am very much more fed up with it than ever.


Here’s hoping that my personal 2016 goes into the bin and takes with it all the bonus health disasters so that by a few weeks into the New Year I can enjoy the giddily flourishing vigour of Alex-normal.

“All component parts are functioning normally, master.”
“I don’t believe it. I don’t believe it! All component parts functioning normally – ha! Puh. You mean to tell me that after all we’ve been through, the systems are functioning perfectly?”
“No – not ‘perfectly’, master. Adverb attributed was ‘normally’.”

K9 reporting on the Doctor’s broken-down TARDIS, Doctor Who – Full Circle

Labels: Carry On, Doctor Who, Health, London, Music, NHS, Personal, Pictures, Richard, Tube, Uncle