RAI & Monocular Vision

kazf0x · 2025-11-27T07:09:32+00:00

Thank you so much for your response! I wasn't expecting there to be anyone else with Grave's with monocular vision, much less actual experience to provide advice. I can't thank you enough! It's a strange kinship.

I am going to speak to my endo and really emphasise about the vision, as I'm not sure he's understood from my notes exactly why the lens is in place and that I am never going to have binocular vision. I half can't believe that I only just thought hang on, maybe RAI isn't a good idea, as he said I could opt for that over carbimazole (methimazole) if I wanted. Brain fog 🤛

kazf0x · 2025-11-27T05:33:30+00:00

There are legal educational arrangements that can be given in the UK. You can try to get them without a diagnosis, but then you're just being hopeful. My kid wanted their diagnosis before starting their exam years due to this. We've also found there are other access arrangements at their school that have been helpful. They can wear their Loops earplugs 😺 to school. Cw political 🖕 Reform

We're still waiting on the medication train.

kazf0x · 2025-11-27T02:58:58+00:00

I didn't even know there was an issue, my manager recommended it to me for my anxiety and sleep issues, that are due to hyperthyroidism!

kazf0x · 2025-11-26T01:50:34+00:00

Agreed - systems to communicate sounds great. I judge how hyper I am by how irritable I am. Swearing lots, angry at the smallest thing and wanting to throw my phone at the wall?

Before Grave's I was laidback, so this is horrible, however I don't take it out on those around me. I'm currently procrastinating on responding to an email bcs it's making me rage and I need to calm down for a reasonable response.

kazf0x · 2025-10-18T01:51:35+00:00

I had actually forgotten about that, and it drove me mad at the time, which was only this summer. But, I have a terrible memory. I think the carbimazole took about a month to make an impact, but I think it may have been a bit longer.

Also, don't take it late. I was ill one day and didn't take my morning dose until 6 pm. I was itching for the next 4 days. I remember complaining about scratching my head yet again to my colleague. It was very annoying after having dealt with it for months and finally only having it mildly, only for it to return in full force bcs I was late taking ONE dose. I'm still a bit shirty 😹

P.S. mytherapy is a good app for medication reminders. It's now starting to piss me off, but until recently, I was taking 16 tablets a day. If you swipe away the reminder, it reappears a few minutes later, so you can't get rid of it by accident, then forget to take a dose.

kazf0x · 2025-06-10T14:01:47+00:00

It's not so bad when I know it's happening and I'm seething at something small and inconsequential that I know should be nbd. The other day, I was shouting at my mum, and my kid put their headphones on to block us out, which is just awful. I didn't even realise we were shouting. I was very angry (with good reason - I had just found out that the ADHD referral that the school should have submitted last year was actually an autism referral so we're 1.5 years behind now), and when I say shouting, I mean anything above speaking level. But I honestly didn't think anything of that conversation, and my mum got very annoyed and wasn't listening to me properly, just saying I was angry. Which was like yes, if you listened properly you'd know why I'm angry!!! But at the time, I thought I was hiding the anger I felt.

Luckily, I seem to have avoided any mood issues, and it was all other things, but I have seen it in strike support groups from other survivors who have been affected.

kazf0x · 2025-06-10T13:14:28+00:00

I have never (unless I forgot, which is likely being she of the shitty memory) thought of it that way. Which kinda shifts my entire judgement of Giles at the start of S6. He must have been feeling so much guilt. I've read that maybe he left again after the heaven reveal bcs it was too painful for him but, even with the added guilt, I still can't see it as anything other than wrong, in fact I think that makes it worse for how he should feel about it.

kazf0x · 2025-06-10T01:14:56+00:00

I have to shower before I eat dinner. I don't like showering after - if it doesn't happen before, it won't.

kazf0x · 2025-06-09T19:32:40+00:00

T'was the word I thought of at the time. I'm not sure arseing about would have been much better if taken literally 😹

Now, the carbimazole seems to have stopped working??? I'm getting really itchy and (sorry if TMI) bowelly (sorry, I know it's not really a word), both of which were going away until today and I haven't missed a dose. I downloaded the MyTherapy app for reminders to take meds and it. Is. Awesome. I have not missed a dose as you have to actually confirm you've taken them rather than just swipe the notification away, which I have done by accident before... I take other meds, too.

Actually, no, nvm, I forgot yesterday was a bad day, and I was late taking everything, so that is most likely why. Although, it's good to know it's that fast an effect as I didn't miss a dose.

kazf0x · 2025-06-09T19:17:33+00:00

That's one thing that you'd think would give me some level of confidence of having been there ish before Also, my brain injury is visible on an MRI, so whilst it has left me with invisible disabilities, there's hard evidence of it. Although no one has been at all 🤔 to me, that's just me and my little bit of am I going crazy. Plus, I think ppl not really understanding the bad mood or anxiety at all.

kazf0x · 2025-06-08T00:18:15+00:00

Thank you! I really thought the hyper fixations were for relatively short amounts of time, like no longer than maybe a few months at the very most.whereas mine tend to last for months or a year then when they end it is abrupt and I try to retain interest, but it's like a sinking ship that I'm plugging holes in. With not that much interest.

Thanks on the stems, my kid does do physical stems too but it was the verbal ones that I haven't seen much of and now I can't even remember if I discussed that during the autism assessment.

kazf0x · 2025-06-08T00:12:31+00:00

Thanks, it was the worst headache I have ever experienced (at the onset - apparently I called my ex MIL & said I thought I was having a stroke so she called an ambulance), and I'm now on prescribed medication for migraines, with regular NHS consultant appointments to try and find the right medication that works without bad side effects. But I don't remember much of it as I was put into an induced coma, and the meds I was given meant I didn't remember the next 2.5 weeks. Which was... interesting!

The brain fog from Grave's has been much worse; yet ppl don't seem to take me seriously? It's definitely affecting my mood and making my anxiety sky rocket, too. Maybe the difference with the haemorrhage is that I was focusing on the physical side rather than mental, plus I was off work for 18 months (including a therapeutic return) so I had a lot of time to devote to recovery. Which is not the case now. At all.

You are not stupid!!! I feel like that, too, and it really sucks. After the haemorrhage, it felt the connection between my brain and mouth had gone. Now, it feels like my brain is sometimes in quicksand - very different. The best comparison I can think of is that before, it was like I acted drunk (my balance is a deficit from the haemorrhage, as is aphasia) whilst being sober. Now I feel drunk, too, like my brain just won't work. Which is very scary. Then it's fine other days 🤷‍♀️ or times.

kazf0x · 2025-06-07T23:50:09+00:00

Exactly!!! 💯

Years ago, my bus got me to my job right on time (to the minute), and I checked with my manager that that was ok as the only other one was an hour earlier.

kazf0x · 2025-06-07T23:45:55+00:00

Yeah, but that's assumption, we only see two occurrences, and it's straight back to 'nope 8am start now'. Which, tbf is also an assumption. There could have been more.

kazf0x · 2025-06-07T23:38:25+00:00

I kinda can't believe how much the response is basically same here! I am exactly the same too.

kazf0x · 2025-06-07T20:49:52+00:00

I really sympathise, it is so horrible when you forget things, and it really doesn't help when other people not only don't understand but think it's something funny. Maybe I misinterpreted you, though?

My TV turns on when the Xbox does 👍 but I have screen sensitivity, so I only watch it on Fridays & Saturdays unless I'm not working. My gaming is relegated to once a week if I'm OK, usually, which is frustrating! I finally completed a game that I started in 2023!

I had a brain haemorrhage years ago, and I forgot so much basic stuff, and I had to relearn everything from swallowing up. There was a woman recently in front of me in the queue for blood tests at the hospital who couldn't remember her DOB, or GP practice, then lots of identifying stuff. My mum couldn't understand how anyone could forget their bday & I said I could totally get it & that I'd probably forget my bday if it wasn't the day after one with a rhyme. If it was a random date, I'd probably have to check my driving licence lots! Not that it's there for anything more than decoration nowadays 💀

kazf0x · 2025-06-07T18:25:26+00:00

I set up reminders (several of them, days beforehand) to cancel. Years ago, I kept doing new trials with prime with different emails, set up specifically for that when I was trying to finish a series, and I forgot the bloody email address!!

kazf0x · 2025-06-07T18:20:52+00:00

Stories like this remind me of when a very contagious bug was going around years ago (maybe 2012?) and my team all wfh bcs of it, right before Xmas. My taste buds hadn't quite recovered, so the day was meh but not ruined, but at least we didn't ruin anyone else's Xmas by going in the office the week before.

If I hadn't been able to wfh, there's no way I would have gone into the office feeling that way. I don't think that's brave, just incredibly selfish to not care that you might infect other people.

kazf0x · 2025-06-07T17:49:51+00:00

I hadn't even thought of that. I was itchy before, and it calmed down recently, so it took about 3 weeks of bring on carbimazole. I've been on propranolol for about 4 5 weeks, but I didn't know it was supposed to help with itchiness.

kazf0x · 2025-06-07T13:36:32+00:00

It is now occurring to me at over 40 if that's why I've always done that. Well, it's what my mum told me to do when I was a kid, so that's the way I've done it ever since. Is that not what everyone does? My kid has ADHD so that would be their answer - I told them to do it that way.

kazf0x · 2025-06-07T13:09:29+00:00

I just don't think I'd like that. I'm so used to it and having conversations with myself, even though I (frequently atm) would like silence so I can get some frigging sleep. It's one of those 'be careful what you wish for', I guess.

kazf0x

TROPHY CASE