"I would sleep in, until 9’oclock 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!”
- Lisa, Young survivor of stroke
Fatigue is common after a brain injury, whether mild, moderate or severe. Watch young stroke survivors talk about their experience with fatigue and how they manage it.
Fatigue affects stroke survivors differently. It can be exhausting and completely draining. Young stroke survivors talk about how fatigue affects them.
“The fatigue for the first couple of years was the worst,” she says. And she still suffers from fatigue 9 years after her stroke. “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. That was tough.”
Letisha also suffers from sensory overload. She says “When I go to the local shops, afterwards I’ll come home and have fatigue for 2 days. One day I’ll be fine, I’ll have lots of energy and then 2 days I won’t”. And as she gets more tired she becomes less tolerant to sound.
Lisa says she has to 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 to be really diligent about doing the former and not the latter.”
Sue managed her fatigue levels by paying attention to what was important to her, which was her young family.
Paul says he has to split his day into thirds to manage his fatigue.
Toni makes sure to plan enough rest when she knows she has to do something. She says “This morning I’ve done an hour 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 [meeting]. 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”.
Michael says that initially his fatigue was debilitating. Nowadays his fatigue is better but he still has to manage it. He says “My brain just shuts down. I can’t follow basic instructions. I just have to lie down for half an hour and then I’m okay.” He says his fatigue is still there and it just comes out of the blue like a fog. “I’ve learnt to accept it. Just take a break.”
I feel sad when she is so exhausted because she’s trying to keep up with this life of being a student, working shifts. I think my hardest point with all of this is that I know what nursing looks like. I know how hard it was, and I hadn’t had a stroke.….
…. She’s carrying on with life. That’s something to be admired. And I listen to her and I respect her…. I’ll check in. You’re being an advocate for their health and their future health. We try and support her by saying we’re not judging you if you need to go for a sleep in the afternoon, just to get through your day. We’ve been learning to respect what her new normal looks like.
- Nichola, mother of Beth who is a young stroke survivor stroke
