Post-stroke fatigue: what it feels like and how I cope

By Toni Arfaras

I had my stroke on a Wednesday in September 2013 at the age of 46. We didn’t realise I was having a stroke.

My husband and I were on holiday, and I'd woken up to feed my dog around 6am. I went to the toilet and fell against the wall as I was walking out. I had an experience of looking down on myself from the ceiling. I called my husband to help me back to bed and I felt nauseous and had a small headache. I thought I must have been coming down with a bug. My head felt too heavy for my neck.

Over the next few says I continued to feel unwell, but a stroke was the furthest thing from my mind. I slept most of Sunday, my husband wanted to take me to Emergency, but I thought I would recover.

On Monday I went to my doctor and the tests showed weakness and loss of sensation. I was booked in for an MRI the following day.

Getting a diagnosis of a stroke rips your world out from under you, your family and your friends. I will always remember the exact moment that I heard the words, ‘you have had a stroke.’

Since the first one, I've had three more TIAs (mini strokes). I was assessed as never being able to work. Sensory overload and fatigue are major issues. When they kick in, I have trouble with my speech and walking. My maths, spelling and reading have all been affected.



We asked Toni a few questions about coping with fatigue.

Please describe what fatigue feels like for you. 

When you mention the word fatigue a lot of people relate it to being tired, but it is so much more than tiredness.

Fatigue cannot be slept away; in fact, I find my brain is so overwhelmed with utter exhaustion it can’t create the mechanism required for sleep to occur. I lie on the couch with my eyes open but not seeing anything. Although my body is present, I might as well be invisible and the same applies to my surroundings.

At times, I have laid on the couch, but I am unaware when people walk into the room or, if I have responded, have no recollection later.

Sounds might be happening around me, but they reach me having travelled through a tangled mess encased in a thick soupy fog.

Essentially my brain is in ‘go slow’ mode. Imagine a snail crossing a concrete path at half speed and that’s how I am receiving information. My lack of ability to take in information is followed by trying to understand what has been said or seen before I attempt to formulate a response. Decision making has to be abandoned as my judgment is compromised and I am unable to assess situations.

I think fatigue affects me cognitively more than physically but, in the same way I can’t sleep, it feels like the message from the brain to my limbs struggle to get through and it becomes hard to move body parts.

Do you also get brain fog; can you describe how that feels too – is it different than fatigue? 

I think the way I have described how fatigue affects my brain is a bit like brain fog, but I don’t have to be fatigued to experience brain fog.

When experiencing brain fog, I sometimes think of it as being a marionette; there is puppeteer above me in control of the strings which results in my movements feeling deliberate, heavy and slow. My thought process slows down, reaction time is increased, and I am an observer to what is happening to me; I am aware of these changes but unable to stop them.

With brain fog, voices can appear to be travelling through a black hole and take on a different timbre and I really must concentrate to understand and respond.

What activities trigger fatigue for you?

There are no activities that trigger my fatigue. Rather it can be caused by a culmination of doing too much in my daily life or when I try something new. For example, I do Pilates twice a week and when I attempt a new movement, I often experience fatigue that same day. If I have experienced sensory overload for an extended time, then fatigue can set in too.

What do you do to manage your fatigue and brain fog when it is triggered?

When fatigue hits, I can’t do anything about it and must succumb to the message it is giving me, which is that my brain needs a break. I know some people say you must push through it, but I don’t think you can push through fatigue and that’s one of the things that differentiates you from tiredness.

To try and reduce the frequency of fatigue, I am very aware of how I schedule my time. If I have a StrokeSafe presentation I try not to plan anything else for that day. If I have a social occasion in the evening, then I don’t plan anything for the next morning. I try to take time out to allow my brain to reset. The reset is a lot easier to achieve than getting over fatigue. Sometimes it can be as simple as sitting in a quieter spot and having a cup of tea while other times I will fall asleep.

What is the best advice that you have ever been given to manage fatigue and/or brain fog?

After I had my stroke, I took part in some research that was looking to reduce the effects of fatigue following stroke.

Something that has stayed with me was being told that the brain has sustained a serious injury, and my brain needed time to recover.

At the time I thought resting meant lying on the couch with the TV on or playing Candy Crush. The researcher explained to me how much brain activity is involved to process everything these activities require. They suggested I create a space where I could sit for five to ten minutes every hour with no stimulus to distract me.

When I started it seemed like such a waste of time, but after doing this for a couple of weeks I noticed my fatigue had decreased. Over time the duration of the break decreased and the interval between the breaks increased. Whilst I no longer do this on a regular basis I now recognise when I need to implement the strategies and will escape to a silent space.

How has fatigue impacted your life? 

I am very conscious of not overloading my days and weeks with things to do. I must weigh up what is important to me and prioritise those things over others. It can be a real balancing act as I hate feeling I’m letting people down but can only do my best.

How has fatigue impacted your mental health and emotions? 

I think at the start I felt a bit guilty about taking time out, but I’ve learned you have to be kind to yourself and your body. I’ve accepted this is how my life is and so I make allowances for what I need to do to give me the best of each day. I don’t need to feel apologetic when I need to take time out. By taking that break I am able to function and live my life.

What does your family do which helps you when fatigue is triggered? 

When my son was younger, I explained how during a stroke a piece of the brain the size of a pea died every 12 minutes, so he used to ask how the mushy peas were if I was zoning out. They all know I am affected and will sometimes say go and take a break if they can see I’m struggling, or they will offer to complete the task I was attempting.

Does your art or hobbies help you with fatigue or brain fog? 

I find my art can be quite relaxing, but it can also induce fatigue. If I am doing something that I am used to doing, then it becomes almost meditative but if I’m learning a new technique then I must take regular breaks and only do it for a short time.

After some lessons I come home and brain fog hits and then I’m out for the rest of the day. I’m lucky in that I don’t have people relying on me for dinner etcetera, so I’m not stressed by it occurring. I get so much enjoyment from my art that I’m willing to accept that as a tradeoff for doing it.