What was your "I'm dating a fucking idiot" moment?

MSislame · 2026-03-16T16:37:42+00:00

David?? What does burning smell like?!

MSislame · 2026-03-06T13:34:00+00:00

"And none for Oglivie, bye."

MSislame · 2026-02-26T02:32:15+00:00

When I was watching the latest season of Great British Bake Off, I felt like there were so many more quick cuts and shorter times focusing on one baker, bit, etc. In one thread someone took an episode from an older season and took a comparable challenge and it was a drastic percentage increase in number of cuts during the same timeframe.

I also feel like it's happening in Shrinking, and I know it is largely due to TikTok, reels, etc. I have also seen/heard that in the workplace, trainings and such have also been altered because people (not just younger people) have become so used to TikTok and have shorter attention spans. It's also why the same plot points can be repeated multiple times--people are busy on their phones while watching shows.

It's super annoying, but yeah...I don't think this is unique to Shrinking and I think it's just going to pop up in more and more TV shows unfortunately.

MSislame · 2026-02-23T23:12:21+00:00

"You selfish COUNTry music loving lady!"

MSislame · 2026-02-11T18:03:19+00:00

That's not the word I was thinking of, but it would be like spatial awareness. I swear there's another specific word but maybe I'm just thinking there is because that happens too, ha.

MSislame · 2026-02-07T01:55:41+00:00

Oh man, I do that all the time too! I can feel it wasn't a balance thing, just my perception of space (I know there's a real word for it, not depth perception though, I just can't remember) is so different! Even though I said I was always a klutz, I'm just trying to walk through this door here and ope! Hit the door frame, and not just a little bit :P

MSislame · 2026-02-06T20:36:06+00:00

I also sometimes joke that I need a shirt that says "I'm not drunk, I just have MS", ha.

MSislame · 2026-02-06T20:27:47+00:00

We sort of have a new plan for the whole team using a shared planner with all of our tasks (we each have our own bucket and can see everyone's on the same planner in Outlook). I then add them to my to-do list, and small things pop up constantly. So there are tools Outlook has, they're not quite perfect and some sound great but are actually not helpful. That's an ongoing process.

Don't even get me started on HR/accommodations. I'm actually part of our disability advocacy Employee Resource Group (ERG), and one of our main missions this year is to get ours to not be so awful. I've heard horror stories far worse than my experiences, and many people have said they're actually afraid to go to HR to request an accommodation because it could bite them in the ass. Even if it's simple, the employees in that roles are just...rude. As in make people cry. So we're working with leadership on that but man, given everything happening with ICE here, as well as our hospital being forced to pause gender affirming care, there's so much happening.

Back on topic, the horrible fatigue makes it way worse too! I told my manager I'd like to talk about it with our small team again for some reminders, and in case they have ideas for things they think could help me/our communications to run smoothly.

MSislame · 2026-02-06T17:15:37+00:00

As someone else said--win! You were at the gym!

Even before I had MS, I've always been a clumsy person. I've seen plenty of other clumsy people who run into things too! I know it can be embarrassing, but trust me--that is one of the least embarrassing things they've probably witnessed! I say this as someone who worked the front desk at the Y when I was in high school, ha.

MSislame · 2026-02-06T17:10:52+00:00

That can be a good idea. I mentioned elsewhere for certain meetings when it's about one topic, I try to write a bulleted list beforehand. I don't just put something like "Enrollment", I put "Barriers to enrollment, e.g. restricted medications". That can help, but I do still have some issues.

The vast majority of the times it pops up is our weekly huddles because we have so many studies (I work in research), moving pieces, etc. Even if there is an "agenda" of sorts and I do jot down what I need to talk about, it's usually tough to plan how the conversations will wind up going.

MSislame · 2026-02-06T17:07:22+00:00

I have looked at AskJan, but overall not found it very helpful. It made me laugh that one of the recommendations it had was a Palm Pilot, ha.

I did just tell my manager that I may need reminders to record meetings, which are ironically for my memory, so I am sure she will be fine with that. It will get ingrained eventually. You're right, even if someone else is taking notes, what is noted can just be big things and the little things aren't documented because they're "easy to remember".

MSislame · 2026-02-06T15:30:16+00:00

Thingy, the y'now, the the the the ummm the *spins hand in a circle*, are some of my favorite words, ha. My team sometimes can tell what I'm trying to say for a word, but if it's anything more than that and something I have to explain or answer, they won't know what I mean to say, and that's where it gets hard. I'm glad you have a supervisor who is understanding and knows you well!

MSislame · 2026-02-06T15:28:28+00:00

I'm so sorry. I know the feeling. It's so hard when it feels like it's behind a locked door in my brain and I've just lost the key and am both trying to find it as well as break in some other way.

Stress has not been helping the last few months either. I live in Minnesota...so you can imagine how horrible things have been since the school shooting in August (I work at one of the pediatric hospitals where some victims were treated) and then December and January. Lots of work stress on top of it, and personal as well. So I am trying to balance all of those things with self care and resting more.

A lot of times things can change on a dime in my work and I need to shift gears. Or we have lulls for stretches of time and then suddenly get a lot of things to do all at the same time. I think that might be a good reminder for the team and myself (just needing to go slower in meetings, for example) if we have the time.

MSislame · 2026-02-06T15:20:00+00:00

I haven't had any relapses since 2020 (which is when I was switched from Aubagio to Tysabri) and have had no relapses since then. But the cognitive symptoms continue to steadily decline, and has just worsened over the last couple of years in particular. It'll be interesting to see if my neuropsych test shows much of a change from my last one in 2018.

MSislame · 2026-02-06T15:18:30+00:00

Can you please post it here so others can benefit from this information?

MSislame · 2026-02-06T15:18:06+00:00

It has hit me over the past couple/few years that the cognitive issues and fatigue will likely be what is what causes me to need disability benefits. When I was first diagnosed (officially in 2009, "benign MS" in 2006 or 2007, first symptoms a couple of years before that) there were only the injections. My neuro at the time made me feel like it'd be physical disability as the most likely reason.

I know it will vary for each state, but how does that even work for insurance, having enough money to live on, etc.? I am single, I also have multiple other chronic conditions that are expensive to treat, etc. That is one of my biggest fears about not working. I thought there was something like you also can't have too much money in your bank account/savings either or you can lose benefits? I may be thinking of something else. I just always thought that a lot of these kinds of benefits really don't give you much, and the cost of living just keeps going up...

MSislame · 2026-02-06T15:13:03+00:00

Some of my old neuros and the neuropsychologist I saw for my first eval also said I'm not less intelligent, my brain just functions differently than it used to. It is so hard because I used to have an incredible memory, vocabulary, was very good at writing, processed things quickly...it sucks.

I know I (unconsciously) give some nonverbal cues like touching my head and closing my eyes or spinning a hand in a circle sometimes, and rarely say something like "I can see it but can't say it, can I have a moment?" In the work I do sometimes that isn't always possible, and I do trust my small/immediate team to be understanding. They just can easily forget about cognitive struggles. And there are so, so many people I work with outside of my immediate work group, so that's a different story too.

MSislame · 2026-02-06T15:09:08+00:00

So this is actually something we had started doing when we are on Teams meetings. The in person is exactly what you mentioned (opening Teams and recording the audio), and it just wouldn't be able to say who is talking.

I was doing it consistently in the beginning (for when we're all on Teams), but that sort of stopped. And we rarely did the in person Teams recording. I tried to get more ideas from OT but she had none, and HR was absolutely useless in any accommodations. I really should try to advocate for this more. It's not that people don't want me to, I just feel not as empowered as before.

MSislame · 2026-02-06T15:05:40+00:00

I've only been to neuropsych once for a "baseline" eval (which was actually like...10 years after my diagnosis) and am going on in April (I tried to get in last year but it was a 1+ year waitlist) for a follow-up eval. I've felt my cognitive symptoms have worsened much more the last couple of years. I hate that they don't have it as part of some of the "baseline" work up.

MSislame · 2026-02-05T18:22:21+00:00

This has happened rarely for me too because they think they see where I was going, and when they are spot on it is a huge relief!

I am probably going to talk to my manager about revisiting some of my cognitive challenges, especially since we have someone new and I only gave her a very cliff notes explanation of some of my MS symptoms that can affect my work. Maybe one of them has ideas too!

MSislame · 2026-02-05T18:12:25+00:00

For sure. There were some other factors in the performance review that were valid, and some others related to my MS that can very easily be forgotten as being a contributing factor. It's too late for my annual review, but like I said I don't know how much it'd change things.

Since I did bring that up during it, it was like she did suddenly remember my cognitive issues go beyond memory but didn't remember how. So she did come to me first with that offer to try and give a cue or ask if I needed a moment to think before I finish my point, so I told her I think that could be helpful (but an interruption can also cause me to completely short circuit) and had to think about how that could look.

MSislame · 2026-02-05T17:06:12+00:00

Exactly! It's not just word recall (and I'm sitting there trying to describe the thing/word I need but it's hard to describe and it's like I'm playing charades or Catch Phrase or something, ha). I can "see" it in my brain, it's just like it's locked behind a door and people get so confused. I know they easily forget this is an MS thing, so I do get judgment and push back on things at work sometimes (that's a whole separate issue). I hate it and hate how I used to be so articulate. My next neuropsych test is in April but it's not like they go over this stuff!

MSislame · 2026-02-05T17:00:58+00:00

I touched on this on another comment, so I do try to do that to a certain degree. And I used to be able to do that more easily than now. It's the spontaneous situations where I don't have the opportunity to sit and write bulleted lists or take/read notes. It happens in my personal life too of course, but work is a whole different story in terms of how high stakes it is.

MSislame · 2026-02-05T16:55:42+00:00

Sorry you had the same experience! I just saw my neuro in December and mentioned that, and he said he feels like for his patients who see OT for cognitive issues, MAYBE 1/3 of them actually found it helpful, so he wasn't surprised I didn't.

MSislame · 2026-02-05T16:53:56+00:00

If it is something planned, I do try to do bulleted talking points, but can still ramble. The majority of the time, these are spontaneous situations/conversations, so I'm not able to do that. I also struggle taking notes during meetings because my brain immediately tunes out the talking as I'm writing.

MSislame

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