Have to leave the hospital carpark today. Not keen to drive around. Have to summon the faculties.
Slight improvement in left eye vision again this morning. When the dark willow branches flick ‘just so’ I can read number plates. Then the willows and opaque sludge quickly block them out. But it’s a good sign.
The willows flickering through my vision will be there for many long, tiring, difficult months.
UPDATE 3.55PM
After leaving the hospital I drove to the lake and put in 5 buckets of water. Still unshowered, I wanted to do something unique to Canberra that chewed up some time because I was in no hurry to get to Bungendore rest area and it was very windy.
So I parked at the National Library and walked to the National Gallery.
Wandered around, using my blood blinded eye to view artworks, no revelation. Enjoyed a talk with an attendant, asking about his favourite, which I do every visit. He was black African if a wonderful depth and tone.
Then showered at about 1.15PM, then to Woolies for two day’s food, then here to Bungendore.
The full time car liver is still here, not a pleasant bloke, heard him go off, old, but not like the creep. This bloke heads out each day and back after 3PM sometime.
Woke to the worst crook neck I’ve had in decades. Hurts without moving.
The drive to Queanbeyan was wild, extremely strong winds throwing the van around. Decided to shower which hasn’t helped the neck, shoulder. Told by the attendant rain is coming, got water in Queanbeyan as well.
Mission achieved. Now in the carpark at my usual place so can stay after eye drops. About to have coffee number two and then oats. Hungry from frenetic stressy activity.
My left eye is no better.
UPDATE 11.42AM
Very disoriented. The strong winds making it worse. I hardly know where I am, forgetting so, nor what I’m doing. I feel as though something terrible is going to happen.
Should be better once I’m in the waiting room, with the vibe of care.
Been frenetic trying to get Galvumet. Had the sequence worked out in notes for the trip up next week but (had to) dashed up unexpectedly on Saturday night.
The hospital pharmacy doesn’t stock Galvumet. Hurried up on foot, wind hurling into the eyes – last thing I want – but Garran pharmacy doesn’t stock the tablets either.
Fantastic pharmacist, though. Looked up where to get them and organised to have them come in – by midday.
I walked back quickly, trying to get out of the madness wind, and was back no longer than twenty minutes when he called. So hurry up again I went.
Both trips required an umbrella at hand. Got away without rain but starting now as I type.
I hope the appointment goes well. I don’t want anything to get worse.
On top of it all is the worry about not getting gear linkages fixed and the van stuck in the spot. No mechanic or supplier so far has been able to help, nor wants to, very much. It’s all too hard.
UPDATE 5.55PM
On my support, we’re waiting until the senior specialist can decide what to do. Checked retina with ultrasound and it was fine, so that worry is out.
Slept well with an intermission of a couple of hours. Unpleasant dreams, which is typical.
When I woke again it was light, and I was delighted to see my left eye sight had improved to about 95% blind. Bettrr by about three or four points. I can see now the shapes of objects.
This means a lot because the danger of dark-fog loss of sight in one eye leaves me vulnerable to total loss of sight if I also get a bleed in the other. I’m usually away from people and could have difficulty getting hope – using the phone is out – and I’d be stuck in the one spot not able to take a single step.
The eye I think has been a bit quicker to get that small, critical improvement, too.
All good news, along with not bleeding on top of the bleed.
Now though the dark willow branches constantly flicking around in my vision is extremely tiring and problematic. I’ll have this for six to nine months or more.
And it never fully goes away. They’re still there from the other bleeds. So they’re piling up.
Anyway, good news for today.
UPDATE 8.25AM
Just tried to dummy ring a number and to use insulin with only the left eye open. I couldn’t see the A4 paper that marks injection location let alone dial up the right dose. Couldn’t actually see the paper: blood and shit blocked it out.
There’s a difference between making out shapes generally compared with specifically.
No way I could find a number to ring if my right eye goes. But with time and the flukey flickering in just the right spot I might be able to see and discern the handset from surroundings.
UPDATE 9.45AM
I called the hospital eye clinic (not emergency line) as agreed with emergency registrar Danny? and explained situation. Fabulous receptionist spoke with the doctor and she called back. Appointments tomorrow at 1.29PM.
Thoroughly grateful. Operating so far today only on right eye, too horrible left eye open, so good to stay here in Bungendore rest area and have a break from critical use of vision, e.g. driving.
Have to get through the day. Considering a shower.
UPDATE 3.10PM
Had a van shower about 11.15AM which was good but like everything else I’m doing I’m disoriented.
Been in touch with the mechanic about linkages/bushes, none has any idea where to get them and this bloke is no better. Sent emails to ebay sellers and might have a chance, long shot.
Then walked ip and down the same track for an hour and a half, taking photos and trying to get used to bad vision, no screens.
Did the same eye test as this morning and the vision is worse, back to where it was yesterday and before.
It’s a bad one. I was relaxing in amongst the splendid tall gums of Bodalla state forest rest area, finished dinner, watching the news, dark, then about 6.10PM a black streak slunk across my vision, then more. Hard to discern in the dim light.
I knew instantly what it is. I closed each eye to determine which eye had the bleed.
I knew I had minutes before my eye might fog out, which it did. In that time I threw on shoes and hurried to get the van ready to travel.
Then I called the eye emergency number as many times I was instructed. Instead of it diverting to a registrar (Saturday night?) I got a prick. Some slightly nasty arsehole who didn’t care that I told him right now my eye is bleeding and I need to speak to a doctor as instructed. Several times, flatly ignoring everything I said, where I was, what’s happening, alone, he just said that "the advice always is to present to the emergency department".
He was even saying it as he reluctantly transferred the call, still arguing.
Danny answered if I recall his name correctly.
Anyway, nothing could be done until Monday but he went through some possibilities for then and told me not to drive.
I couldn’t bear a sleepless night in the middle of nowhere and the possibility everything could get a lot worse. I knew from before that at night the swirling black blood isn’t quite as distinctive at night, and adrenalin and fear might get me to Canberra hospital.
I lost sight before I got out of the rest area, so it was a tough drive. Right eye blurred too from the strain.
I’m in the hospital now, typing with my good right eye and seeing if the concentration and effort causes a problem. Trying to get used to the left eye impairment.
The goal I’ve decided is to go to Queanbeyan, shower, food, water, wash clothes maybe (for presentation to drs and nurses) and maybe sleep at Bungendore. Not ideal, but an option to stay.
Main thing is not to panic.
UPDATE SUNDAY 3.45PM
Left the hospital seeing how I could drive in the daytime. Bit iffy but I could do it.
First thing: get water. If I’m stranded I’d need water most of all. Did that at Queanbeyan. Then a shower at the aquatic centre which was divine, and helpful.
Then to wash clothes. The idea was to stay busy, mind occupied, time allocated. All full at Queanbeyan so I drove all the way back past the hospital to Mawson and loaded two machines there.
Then trips to Woolies filling in the time.
The eye is blinded with dark fog as it gets but didn’t bleed again, so decided to enjoy my time unhassled at Bungendore and work things out from there. Could have stayed again at the hospital but Monday tomorrow means I’m extremely limited, stuck in the van in the carpark, although safer.
So I took the risk, drove to my own space, and folded clothes and put on fresh sheets upon arrival.
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