#pupil dilation hell

[clatterbane]

Opthalmology appointment update: They were the busiest I've ever seen on any medical visit here so far, but also perfectly respectful and professional-acting dealing with me there too! Which came as more of a relief than it should have.

They didn't even get to any retinal photography today. But, a quick peek into that one eye in particular was enough to get the doctor wanting to get me booked in for some laser zapping before Christmas Limbo arrives! 🙃

Not escaping it with the other eye for now, as I was sort of hoping since I hadn't noticed any obvious signs of trouble out of that one. Yet. But, she was acting like (repeatedly) Haunted Eyeball needs treatment ASAP--and, once again, pretty appalled that it hadn't been lasered well before this!--which was honestly pretty worrying.

So, I am now booked in for my first laser treatment on that eye next Wednesday. 😰 At the desk, they actually wanted to schedule me back this Thursday (!), but that was a no go with the schedule packed full of medical disruption until I thankfully get a (too brief 🙄) break starting Friday.

Tomorrow morning: Head for Endocrinology again at early o'clock, to get set up with that 24-hour blood pressure monitor. I do totally intend to inform them of the ongoing migraine, from getting plunged back into Pupil Dilation Hell today. But yeah, that should be extra fun all around. Great timing! 😒

The next day: Hopefully just take the device back to them and not have to stick around for long, scheduled for the same early o'clock. Probably remind them of the freaking migraine likely skewing results.

Up next week: Eyeball Laser Wednesday, which I'll apparently have to get to and from on my own since Mr. C was already scheduled to do something else important. 😬 Gastroscopy Thursday in Lund. Then freaking GP Phone Appointment Friday, to follow up on their fucking monkeying around with my neuropathy pain meds. Which is making everything else suck more.

All the rest while dealing with no doubt at least another Pupil Dilation Hell migraine, plus (hopefully temporarily!) fucked-up vision and whatever other aftereffects from the laser zapping. With any luck, I will get SOME break between migraines, but we'll just have to see.

I know they're apparently really wanting to get as much as they can out of the way before Christmas Limbo. In a way, I am glad they're not just continuing to neglect some urgent looking problems. And at least nobody has been actively treating me like something stuck to the bottom of their shoe so far.

But jfc, it would all be So Much even if I were not autistic. 🥴

Honestly barely holding myself back from screaming meltdowns whenever I let myself think about it, and dealing with some pretty disturbing thought loops about now.

But, what are you going to do? ¯\_(ツ)_/¯

[clatterbane]

Tomorrow morning's delight: an opthalmology appointment! 😬

Which I am extra dreading, after repeatedly getting hold of that one blamey paternalistic fuck back in the UK.

(And just generally getting treated as subhuman by staff--and witnessing more than one big screwup in action--at that particular hospital clinic. A really fucking weird atmosphere, when eye doctors had seemed about as nonthreatening as you can get before?)

Not particularly looking forward to the minimum several days of photosensitive migraines afterwards, either, though at least it's not summer. 🌞

Plus, there's no way I do not need some kind of retinopathy treatment now, in at least that one eye. (Still out of pocket for now, just as icing.) Not only given the repeated Haunted Eyeball episodes, but also after seeing the referral notes and how much worse that eye had apparently gotten without their bothering to tell me.

(Besides the general NHS approach of treating people like mushrooms, IME? And the general shambolic state of that particular opthalmology department? It's easier to get away with ghosting and neglecting patients while the health service falls completely apart thanks to the Tories and added pandemic, if you don't even inform them of their need for treatment! 🙄)

Mechanism of worsening diabetic retinopathy with rapid lowering of blood glucose: the synergistic hypothesis - BMC Endocrine Disorders

Insulin treatment has been associated with a paradoxical worsening of diabetes retinopathy since many years in European cohorts. Recently, t

Yeah, that's another fun thing! 🙃 To go along with the treatment-induced neuropathy.

On the plus side, though? At least this shit does not seem to be getting worse still. And the damage ought to slow way the hell down/somewhat heal itself, now that I am getting appropriate treatment for the diabetes. My control is actually looking pretty good and stable, now that I do have some freaking insulin in my body. (Storebought is fine! 🥴)

But yeah, I fully expect to be going back to get my eyeball(s) poked with hypodermic needles and/or zapped with lasers in the somewhat near future. With local anesthetics not working right for me, of course. 😬 Since they do seem to have a much more functional healthcare system here.

Pretty well resigned to that, for years now--and the risks there are looking so much better than, you know, eventually losing my vision! I would really like to continue seeing, thanks.

What I am more concerned about in advance, though? Hoping they WILL NOT treat me by default like all of this is just punishment for being an unrepentantly Fat Stupid Lazy Noncompliant Bad Diabetic Yank Slob--without bothering to even find out what's even going on. And I ought to show suitable gratitude that they are even charitable enough to see me at all, and do whatever the hell they choose to do for "help".

Nobody could possibly deserve that package of bullshit. On top of trying to deal with serious medical issues, no less. Here's hoping that the attitude will, once again, be different at this place!

[clatterbane]

Now at the health center, just got the dilating drops! 😬

At least a 20 minute waiting room break to let the fun begin, so I took the opportunity to roll my already kinda overloaded ass outside for a decompression break in the drizzle.

At least they did use the weaker concentration--and no phenylephrine!--so with any luck I won't be in for much over a week of Photosensitive Migraine Hell this time. *fingers crossed*

[clatterbane]

Also, as a backup option since I ended up with no prescription sunglasses, heading into another at least a week of Dilated Pupil Migraine Hell tomorrow? 😱 I got both of these!

Wasn't sure which might work better with these frames, so I ordered both some cheapo clip-on and over-glasses wraparound polarized shades to try. Which thankfully did arrive today.

So, hopefully I will at least be going into that damned appointment better prepared. 😩

[clatterbane]

Finally getting as awake as I'm going to, I think, and I'm not entirely glad since the migraine is really starting to tank up. In a dimly lit room after 11 p.m. now 🙃

After we got home from the hospital this afternoon, after decompressing some I decided to take about a 3 hour nap. Which turned into almost 7! I didn't even register turning the alarm off. Must have really needed the rest.

So, that was discombobulating enough, before discovering I'd woken up too late to reasonably order in food from anywhere as planned before Mr. C needed to go to bed. He's an adult totally capable of feeding himself if he doesn't get too caught up gaming like this evening, but I still felt kinda bad.

Threw together some quick emergency pasta whether I felt like it or not, and was actually gladder than I expected to have that. Must have also been needing food more than I thought.

(I also embarrassed myself by keeping Touretty-saying that I wanted to die, and I think he wanted to tell me to forget about the food ffs--but was afraid of making the situation worse. 😒 He's certainly seen enough weird behavior before, but still. Just to make things more fun for everyone.)

Starting to feel on a slightly more even keel now, after getting some food in and making a cup of coffee. Low blood sugar couldn't have been helping earlier.

But yeah, too much disruption all around today. I almost want to go back to bed now, but don't think it would really help. Hopefully tomorrow will get back closer to normal. Except for the next couple of weeks' stay in Migraineville.

[clatterbane]

I was really hoping to get new sunglasses before I had to go back for another retinal exam, but it didn't end up happening.

(Wanted to get new glasses all around, but the shades are kinda pressing right now.)

The regular glasses are way out of date, and the sunglasses are actually from the prescription before that. ☹ A noticeable difference, and not in a good way.

It's this kind of very British day, and I am still needing to wear them inside the house. As an indication.

Doubt the extra eyestrain from like 2008 prescription does much good for the migraine situation, but hey. Better try before the next time.

[clatterbane]

Once again, it feels kinda mean. But, I can't help but wish the medical staff who want to act like I'm just being ridiculous (and/or making shit up) would get to spend at least a week straight in Migraineville. Pretty well out of commission.

See how they like it then.

Preferably after getting some corrosive substance put in their eyes 😬

[clatterbane]

The good news from that hospital ophthalmology appointment earlier this afternoon: The situation has apparently not changed as much as I was afraid from last time. Yes, there are some retinal changes, but it's not to the point of needing laser treatment yet 👍 The cotton wool spots in one eye were apparently new, but not as big an immediate concern. Supposed to go back for followup in 4 months.

Also, they didn't act quite as shitty with me overall this time, with Mr. C along. (As I was kinda hoping, yeah.) He was still acting surprised at some of the behavior he did witness, so indeed once again it probably wasn't just me imagining things weren't right.

We didn't end up waiting nearly as long this time, either. The whole thing took around 2 hours. Last time, it was at least twice that. It was still nice being able to go pee when I needed to, with someone else there. (And I did need to once.)

The not so good part: Pretty much everything else.

They acted like I was just making shit up again with reacting badly to the dilating drops, even with him backing me up on that and the photosensitive migraine from it. They obviously didn't care, if I weren't just lying for whatever reason you would lie about something like that (?)

So, I didn't just get two types of the stronger drops again there (including the phenylephrine which I am also obviously sensitive/allergic to something in), I also ended up with one eye double dosed because it wasn't dilating fast enough for the actual ophthalmologist. I've been told multiple times before that it took longer than expected to work, but guess that guy was in some hurry to get me out of there 😒

So yeah, hopefully it won't stay stuck that way even longer than the other eye 😵

I'm already having stronger blurry vision and migraine effect getting started up than the last time, besides the sandy burning boiled red eyeballs from direct irritation from the one type of drops. That part will hopefully not last more than a few days again, at least 🤞 Hoping I won't get more sensitized to whatever it is, with repeated exposure.

That recent trip to Migraineville had me stuck in looping suicidal thoughts for around a week. (And of course you can't say that...) Really not looking forward to the next couple of weeks, after the stronger drops today. From past experience.

On the plus side, I shouldn't have to do that again for months. Time to worry about forcing myself through it again later.

And hopefully I'll be at lower risk of just going blind in the near future now, without any monitoring or treatment. That prospect had me pretty concerned for a while there, not too surprisingly, after I got tossed off ophthalmology before. And started noticing some vision changes.

Time for an overdue nap soon. Pretty rough day so far.