#postoperative cognitive dysfunction

90 days of this living hell. I am SO glad I finally have an MRI tomorrow. I just hope it actually shows something useful. 🙏

I wish I could find the words to express how scary and emotional this has been for both me and my partner. But the whole problem is that I've lost my ability to understand/interpret complex language (amongst other serious cognitive problems).

I have tried to stay optimistic, but it's so fucking hard when every one of the past 27 days has been nothing but a blur. I've lost all short-term memory, I cannot tell you a single thing that's happened in the past month. Hell, I can't even tell you what I did this morning!

I am completely unable to perceive time. I have what we call 'time slips' where I lose chunks (usually hours) of time with no recollection of what I did during them. Yesterday I was SO certain something happened 4 days before and my partner had to remind me it had only been the day before.

I can't remember routines. I can't cook, I need help doing housework. I have post-it's all over the house, with step-by-step instructions for even the most basic tasks. There's one taped to the outside of the shower glass, because I was having difficulty remembering the steps of how to shower. Prior to making this instruction sheet, I had gotten stuckin the middle of showering, because I genuinely couldn't remember what came next in my routine. I couldn't even recall of I'd already washed my hair, so I had to start all over again.

Usually, writing would be my coping mechanism. But I have lost the ability to write altogether. I can put words on a page but they're completely disorganised and make zero sense. I can't read either, even my own fics I've read 100x before feel like they're in another language when I try to read them.

Because of this constant state of confusion, I can't drive, I can't look after myself without my partner helping me tons. I have basically lost all of my autonomy.

It is as if I developed full blown dementia overnight. It's so terrifying to suddenly lose all cognitive function.

I feel like I've lost what makes me, me. My partner has had to become a full-time carer on top of their full-time job. Without them constantly checking in with me throughout the day, I wouldn't even remember to eat or take meds or drink water. We've had to put so many systems in place just to try and make sure I remember to do the very minimum tasks relating to daily living.

We have been through plenty of hardships over the past seven years, but this current situation has been the worst, it's a constant test of our relationship. I am forever grateful to have such a phenomenal partner to help me through this rn. I love you so much @phantomhag-666.

He dismissively said my 'likely' ADHD and Anxiety (you know, the conditions I am SO LIKELY to have, they've been medically diagnosed for YEARS. But okay) are half to blame, the other half of my problem, is OBVIOUSLY the pain meds I take (again, for MEDICALLY DIAGNOSED CHRONIC PAIN CONDITIONS).

His advice was: I should be taken off all my pain medications, because that would clear up the debilitating cognitive symptoms. You know, the cognitive symptoms that came on SUDDENLY, IMMEDIATELY following surgery in May....?????

But yeah, sure, I'm sure my female hysteria can be cleared up by taking me off all the medications I'VE BEEN ON FOR YEARS, THAT HAVEN'T CHANGED DOSEAGES OR ANYTHING SINCE 2023.

But she was like "I knew what you meant, no worries. You just want all of your current suffering to stop, which is SO understandable. You don't actually want to die, you want to be able to live again, and until your current pain ends that can't happen."

Been stuck in this living nightmare for over 7 months now. And I FINALLY have a neurologist appointment today. But I'm finding it difficult to care. This appointment will cost us nearly $700, yet I have little hope that she'll offer any useful advice. It's hard to rationalise WHY I'm even putting myself through another specialist appointment at all. 🙃😔

I am conscious, talking, moving through my day. I'll post on here, or do chores, or text people and from an outsider'perspective, it may appear I'm operating normally.

But the thing is, I won't remember any of it. My body is on auto-pilot, even when I'm actively involved in conversations, I often won't be able to recall them soon after.

Yesterday was REALLY bad. I think it's my worst memory lapse to date.

I remembered waking up with my 8.30 alarm and forcing myself to stay awake bc I didn't want to miss a possible phone call from clinic I'm waiting on a follow-up with.

Then, I blinked and lost 3 hours.

Suddenly, Doom Them was sending their morning check-in text to make sure I'd had meds and breakfast. Turns out, it was suddenly 11.30. I had NO memory of what happened between 8.30 and then. I'd been awake three hours, but I hadn't even gotten out of bed. It wasn't until I saw how late it was that my brain finally registered how hungry I was and how badly I needed to pee.

I did my morning routine: took my inhalers, took my BP, changed clothes, used the bathroom, then went to the kitchen.

That routine usually takes 10 minutes..... But glancing at the oven clock, I saw it'd taken me over 40 minutes to move from the bedroom to the kitchen. I made breakfast and sat down to eat.

I blinked again. Another hour and a half lost.

I glanced at the oven again and it was suddenly nearly 2pm. I was still sitting at the kitchen bar, empty plate in front of me, but no memory of actually eating breakfast.

I remember cleaning up my dishes, before going back to my room to rest.

Then, just..... Nothing.

Suddenly, Doom Them was waking me up. They were in bed with me, the room was dark and my sensory lights were on.

I thought, it was morning and they were getting up for work. I figured all of the previous was just a vivid dream. How else could they have suddenly appeared next to me in bed???

They noticed how disoriented I was and explained I was already asleep when they got home from work, so they asked if I needed to nap longer. I apparently said 'yes', so they laid down too and set a one hour timer.

The hour had just ended, so that's why they were waking me up. It was 17.30 - - and I had absolutely no memory of even going to sleep in the first place.

I explained this and said, "I must have slept a really long time because last I remembered, I'd just finished a late breakfast?"

Doom Them: Couldn't have been that long, because you were texting me when I went to the pharmacy to get your mouth medication.

Me: My.... What?????? I don't know what you're talking about?

Domm Them: The medicine for your oral thrush. I went to the pharmacy to get it on the way home.

Me: Wow!! Thank you, baby!!! That's so thoughtful of you to organise that.

Doom Them:......???? I didn't? You organised it all, then text me to ask if I could pick it up. Then, when I was there, I was texting you questions and you were replying?????

By then, I was fairly certain they were pranking me, because I had absolutely no clue what they were talking about.

But, by piecing together things with what they knew, what the pharmacist said, and with call mad text logs in my phone - -

At some point in the day, I had apparently called our pharmacist, explained I had oral thrush from my new inhalers and asked him to set something aside, so my partner could come by later. Then, I had text all of this to Doom Them when I asked them to pick it up.

And yep. Sure enough, I had also replied to their texts when they were at the pharmacy.

AND. I. HAD. ZERO. MEMORY. OF. ANY. OF. THAT.

Reading the texts was so jarring. Clearly they were sent from my phone, but it was like someone else must have sent them, because I didn't remember any of it.

Following that, I scrolled through whole conversations I had with other people yesterday, none of which I remembered. I replied to emails, did a couple of admin things around the house, had taken my lunch meds at some point - - but I wasn't aware of any of it a mere few hours later.

I cannot put into words how terrifying that is. How discombobulateing and disorienting it is to have proof you've done something and yet, have absolutely no recollection of it. It's like being black-out drunk, but I am 100% sober.

A little later, when Doom Them went to make dinner, I got up to use the toilet and take the mouth drops, so I could eat too.

After the bathroom, I came in the kitchen and asked if they'd checked if there was ham. (Bc we had just been talk about me having a sandwich)

They looked at me like I had 3 heads. And said "Yeah.... There was ham.... I already made you a sandwich and brought it to you????"

It was at that point, I registered that they were somehow MIDWAY through eating their dinner???? But to me, they'd only just left the bedroom MAYBE 5 minutes ago???

Turned out, they'd gotten up first, made me food, BROUGHT IT TO MY BEDROOM, then went to eat themself.

In the time it took me to do what I needed to in the bathroom, I'd already forgotten they brought me food.

I had walked into the kitchen, ready to make myself a sandwich..... But there was already one made by my partner, sitting in my bedroom, completely untouched.

Not all days are THAT bad, but overall, I don't have ANY specific memories from the past 100+ days. I remember everything prior to surgery, including stuff that happened the morning of!! I remember specific conversations we had while waiting on the surgeon. I remember everything with perfect clarity.

Everything after????? Is just a void.

I try and write my day down as it happens, or post stuff like this, less because I think anyone else cares... And more because, I know, by tomorrow, I won't remember any of it. I will think, "I should post about that really really bad amnesia day..." and I will inevitably find this post, already documenting it. But I won't remember making it.

That happens over and over and over. I cannot express how grateful I am to have a partner, and friends, who don't get annoyed when I repeat the same things day after day, all because I didn't know I'd already told them something.

I'm just so damn tired of this brain soup. I want my life back. I want my cognitive function back!!! I want to be able to answer when Doom Them asks how my day was, or when someone asks a simple question about something that happened recently.

I just want answers and so far, all we've hit are dead ends.

On a scale of the worst pains I've ever dealt with, I rank optic neuritis right under complex stage IV endometriosis.

I am so miserable. I have to wear my rx sunglasses all day and keep my curtains closed and turn all the colour and brightness settings down on my devices. And that barely helps.

Currently on day 2 of a 18-day course of oral steroids. Taking 1000mg daily right now and it has barely done anything for the pain.

Having a massive hour-long meltdown yesterday didn't help matters. 😩

95 days of medical mystery hell and no one can give me any answers as to why.

I know it doesn't do me any good to lament over things I can't change, but fuck, not a moment has gone by that I haven't regretted my choice to have surgery. It's not like I did so without serious consideration.

I couldn't stay on my previous treatment indefinitely, and this seemed like my best option. But out of all the possible side effects i discussed with my surgeon, no one could have forseen the drastic, life-changing, impairments I've developed post-op.

My gynae surgeon is literally so perplexed and horrified, she seriously told me this could wind up being a case-study into the rare complications of surgical menopause in people under 40.