Fatigue can be so draining. So how do you function?

Fatigue affects stroke survivors differently. It can be exhausting and completely draining. Young stroke survivors talk about how fatigue affects them. 

Some of the topics discussed will get you thinking about your own experiences. If you feel any distress, talk with someone you trust—perhaps a family member, friend, or your doctor. If you need support, information or advice StrokeLine’s health professionals are available 9am to 5pm, Monday to Friday, AEST. Call StrokeLine on 1800 787 653 or email strokeline@strokefoundation.org.au. Lifeline is available 24 hours a day on 13 11 44.

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Video transcript

Paula: Oh, fatigue! God. The brain fatigue. The constant, everything is so much harder cos I have to concentrate to look “normal”. Whatever normal means. That, I think is the worst thing, the fatigue. Just some days I’m just so drained. I just, I cannot even function.

Carly: But in that first year, 6 to 12 months, I was dealing with some of the more common problems that stroke survivors experience. Extreme fatigue. Trying to make my way through tasks, simple tasks like making a bed or showering or dropping the children off at school, when I was able to drive again or walking. Those tasks would just put me in bed.

Jodie: The fatigue that you experience is just astronomical. Like I’ve been tire before, junior doctor work, nothing compared to this. But I didn’t actually go into the fatigue. That’s how it should be, it should be said. The fatigue.

Amy: Now, it sort of goes weekly. So it’ll be like every 5 weeks. I’ll just be like “Whoa I’m tired”. I need to nap again. And then I’ll be fine again. And then it’ll just hit me in the head again. But I haven’t found anything that helps. And that’s where I’m struggling. I’m like, why aren’t I better yet? And no one understands. Like “You shouldn’t be tired”.

Paul: Like I’ve been out this morning for a bit of physical rehab, and now I’m sitting down having a chat this morning. And I will go to bed for an hour after you leave. I have to split my day into thirds.

Toni: This morning I’ve done an hours session of Pilates. So I got home at about 11:30am. And I have just laid down on the couch since then. So that I could do this. Because if I hadn’t done that, if I’d gone to actually do something. Then I wouldn’t have been able to do this discussion. I suffer from a lot of sensory overload. And so when the sensory overload kicks in, the fatigue then is part and parcel of that. It’s quite debilitating how it can get in and just wipe me out.

Laine: The most challenging I would say is my pain and fatigue, I think. I’m really lucky that I don’t have major impairments. I walk quite well. I talk quite well. It’s the hidden sort of disability, if you’d like.