been away for a bit. so i’ve been thinking about this guilt thing with ms. like when you’re having a good day and you feel bad for complaining about the bad ones. or when you need to take a break and people think you’re just being lazy.
i’ve been on ocrevus since 2023 and my edss is holding steady, but the fatigue and cognitive stuff still get to me. what i’ve realized is that it’s not about faking it or being weak, it’s about understanding that ms is unpredictable. some days i can work a full shift, others i need to take a nap just to get through the morning. and that’s okay.
i’ve started tracking my symptoms and triggers, and it’s helped me see patterns and communicate better with my neuro. maybe that’s the key - not feeling guilty, but being honest about what we’re going through.
so unpredictable is definitely the word for ms, and tracking those invisible shifts makes a real difference. i had a patient, years ago, who used a simple log to map her energy and cognitive fog on “good” vs “bad” days, showing how her capacity fluctuated over the week. that kind of comparison, not just overall trends, helped her neuro understand the daily reality of her “guilt” and the need for breaks.
that “people think you’re just being lazy” part hits hard. trying to explain to my supervisor that some days my brain just blanks on simple tasks, even if i look fine, is exhausting. i just log every specific cognitive blank
what gets me is that “and that’s okay” sentiment. it might be okay for us, but it rarely feels okay when you’re trying to explain a cognitive blank to a coworker or a patron at the library.
Fatigue is this weird double standard where people think you’re lazy if you need a break but also expect you to be grateful for good days. “it’s not about faking it or being weak” really stands out to me, because I’ve been there too, trying to explain that exhaustion that sleep doesn’t fix, it’s like a different language to people who don’t experience it.
Fatigue patterns can be tough to pin down, and i’m not sure “ms is unpredictable” fully captures it - you said “some days i can work a full shift, others i need to take a nap” which sounds like there might be identifiable triggers at play, even if they’re not always obvious.