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The TakeAway - talking about fatigue with Toni Arfaras

February 05, 2024


Toni had a stroke in September 2013 while she was on a holiday with her family.

Since then, she's had three more TIAs. Toni was assessed as never being able to work due to sensory overload and fatigue. When they kick in, Toni has trouble with her speech and walking. Her maths skills, and spelling and reading have also been affected.

Do you want to know more about Toni?

You can read her blog here: Post stroke fatigue, what it feels like and how I cope.

What is a boom-and-bust fatigue cycle - what does that look like to you? (0.35 secs)

Toni says, “When I do too much, I crash. I am flat out on the couch unable to do anything.”

When people live with chronic fatigue, it's common to see a boom-and-bust cycle. This is when you might ‘do too much’ one day and feel unable to do anything the next, due to your levels of fatigue.

Resources:


What works for you? (1.09 min)

Toni says, “I am now very aware of my fatigue, so I plan not to overdo things. For me, that means scheduling my day to avoid fatigue.”

Fatigue may be a continual sense of mental fatigue, or it can happen when a person is trying to do too much, and the brain is overloaded. This often results in mind-numbing fatigue that can last for several days.

Resources:

Synapse Managing Fatigue. 

What doesn't work for you? (1.35 min)

Toni says, “It can be hard to stick to a schedule. I don’t like to say no, but I am getting better at doing it.”

Resources:

I-REBOUND: Helping family members understand post stroke fatigue.

Have you found using concepts like pacing or spoon theory helpful? (1.50 min)

Toni says, “It’s helpful as a reminder to make sure you don’t deplete your cup. (energy allocation for the day). You need to build up your energy before it gets too low.”

In spoon theory, spoons represent both the physical and mental load required to complete tasks.

Resources:


Reflecting back, what are some miss-calculations you made about living with fatigue in the early days? (2.36 min)

Toni says, “In the early days I thought that resting was sitting on the couch watching TV or playing Candy Crush. It isn’t because your brain must be active. Resting means stopping everything, lying in bed or sitting on the couch and doing absolutely nothing.”

What does the emotional or mental burden of fatigue look like for you? (3.00 min)

Toni says, “I feel like I am letting people down and becoming a burden because I need their assistance.” To do basic things.

“Now I know that I have to be kind to myself and make time for me.”

Is there a difference for you between fatigue and brain fog? (3.33 min)

Toni says, “Yes. Brain fog is when I take on information slowly, but I can still function and take on the information. With fatigue it completely flattens me out. But brain fog can lead to fatigue.”

Fatigue is not just tiredness – it is a physiological condition which affects all aspects of a person’s life.

Brain fog is not a medical diagnosis, but rather the description people use for their symptoms. Brain fog is what doctors refer to as "cognitive dysfunction". This describes problems with closely linked tasks such as concentration, information processing, memory, thinking and reasoning, and making sense of language.

Brain fog is exactly what it sounds like: a feeling something like being shrouded by a thick fog, not quite able to grasp ideas, feeling confused or disoriented, and having trouble concentrating or recalling memories.

Resources:

Some common symptoms of fatigue.

What is your favourite band or song?

Toni says, “I love The Paper Kites, but listening to music can bring on brain fog and fatigue.”

“My favourite song is ‘She used to be mine’ by Sarah Barellis. The words may resonate with other survivors.”


Where can you find help?

StrokeLine call 1800 787 653

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