Fatigue can be life-long. So how do you live with it?

After stroke, fatigue can be life-long. Young stroke survivors talk about fatigue, how it has impacted them and what helps them manage it.

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

Lisa: Fatigue. Yes. Like beyond anything you could ever experience.

Letisha: Oh my God. And I still do. The fatigue for the first couple of years was the worst.

Michael: Fatigue demonstrates, and I call it … and it hits you like a wall. It’s a brain fog. People call it fatigue. People around you don’t understand it. But but it’s just like, my brain just shuts down.

Lisa: I would sleep in until 9 o’clock in the morning. I’d work for a few hours, and by 12 o’clock I just could not function. It was like my brain just went “You know what, that’s enough.”

Kristie: Yeah, I still get fatigue. I even just had a job interview. And it was an hour. And I was just like … I had a headache. And I was just, like, so tired after. I was, like, “oh my god”. It’s your brain, like, constantly trying to form sentences and not getting brain fog.

Letisha: I would spend most of my days in tears because I was just so tired. It was so depressing to be tired at doing nothing. I’d be lying on the lounge doing nothing and crying because I was doing nothing and I was tired. Yeah. That was tough.

Paul: The feedback cycle for boom and bust, for fatigue management, for me anyway, is long. It’s a day or two. So I mean if you go to the gym for example, and you overdo it, you know that pretty immediately if you’ve done something stupid. Whereas for me, I don’t know until the next day, sometimes the day.

Bethany: I found that if I was trying to fit too much in, like trying to do shopping, appointments and cleaning. And then also if I was trying to concentrate a lot on doing something, it’s just, my brain is like “Nah”. It took me about 3 days to recover before I got back to where I could actually do stuff.

Sue: I just managed my fatigue levels. I paid attention to what mattered to me the most. And what mattered to me the most was my young family.

Lisa: The things that I used to do, I can still do them they just make me more tired. And so I’ve got to really be conscious of managing my energy. Your energy management is really important. And it’s worth focusing in and understanding what gives you energy and what takes your energy away. And be really diligent about doing the former and not the latter.