Pushing through the fatigue barrier…

Most stroke survivors experience fatigue in some form. Like many debilitating symptoms of stroke, fatigue is an invisible symptom. You can’t touch it, can’t see it, you can’t smell it and definitely can’t eat it ;). But it is always there in my head, lingering like an unloved guest.

‘Fatigue is a term used to describe an overall feeling of tiredness or lack of energy’ (Oxford dictionary). This article at the Stroke Foundation has a great general resource of fatigue sufferers, but this blog post tries to articulate my own experience about fatigue after my stroke.

I am eight years post-stroke now, but I remember the early stages of my recovery at Caulfield hospital rehab. I remember I was very alert and awake most of the time but the fatigue was ever-present. For example, I remember that my parents said that they often try to visit me but sometimes I was fast asleep - especially when I started ramping up with my therapy program. Also I was nervous about having more strokes in the future and this fear was a burden - especially when I was very fatigued - however after my angiogram (about 9 months after my stroke) and the result was clear and not at risk of future strokes, it was a huge relief.

My oldest son, Oscar, was still a baby (7 months) after the stroke occurred, so I was used to being tired so it was very hard to pinpoint the times I was suffering from post-stroke fatigue or I was generally tired. The best way to describe my fatigue in the early stages is I had a blurred mind or brain fog - obviously caused by the stroke and my induced coma medication after-effects. My brain was severely damaged by my stroke, so my rehab is an ongoing battle.

I'm proud that I worked hard with my rehab and I benefited a lot, however this work resulted in an overloaded brain - I think the word is ‘neuro-fatigue’. I remember that I yawned a lot during my therapy sessions - especially speech therapy and occupational therapy. Actually I felt bad for my therapists because I was conscious about my appearance - e.g. trying not to yawn, be a good patient and to explain that I was not bored (obviously it was not on purpose !!). Basically recovering from a brain injury requires lots of brainpower to process and understand things.

Speaking of speech, I sometimes still struggle with group conversations - following the conversation - or missing key information with my speech and aphasia, and if I am tired, my speech deteriorates. Same thing with exercising - if I am concentrating on the exercise and speak at the same time, I struggle. It is like a multitasking effort, and like many skills, I need practice and repetition.

About 14 months after my stroke I started having epilepsy seizures - this was a huge dent with my confidence. Even though my angiogram result was the best possible outcome, I was scarred from this and I have anxiety about having more seizures. If it’s a heavy day and I can’t have a nap (because of no time, or other reasons), in the back of my mind I’m thinking “I’m very fatigued, I hope it’s not a seizure coming up”. Main reason is because if I do have a seizure, I lose my independence (not all of it), things like not being able to drive or not pushing myself with my therapy. This fear makes me more conservative however every mini-milestone - like travelling to London and Paris without a seizure - makes me more confident and relaxed.

What strategies did I use to overcome my fatigue issues?

Drinking tea:

One of my strategies is having a cup of tea! I’m not addicted to this but I find that one cup of tea in the afternoon really helps. Maybe it is an addiction - I look forward to 5:00 for my cup of tea. Maybe it’s the caffeine or just the routine of having my cup of tea (and a cookie!). Yes, I have a sweet tooth…

Nana-naps or power naps:

I usually had a ‘nana-nap’ most afternoons to recharge my batteries. Usually around 3 or 4 in the afternoon I am feeling fatigued. My method was using a sleeping mask, listening to soothing music (with a very low low volume) on my radio and setting a sleep-timer for 15 minutes. Most occasions, my method worked nicely, but is definitely not full proof. During heavy days of therapy, I fell asleep pretty quickly in my bed, and if not, my brain only needs a 15 minute power nap to switch off my brain. After resting or sleeping, I am more awake and alert - ready for the second part of the day. This clears my head and makes me less anxious - like a cloud has lifted.

Before my third son (Charlie) was born 10 months ago, I actually decided to train myself to cope without sleep. I abandoned my regular afternoon nap. Sometimes I was tired, but I thought this training was essential - so I was ready for the lack of sleep that comes with a newborn baby. Gradually I got more confidence - and now I rarely have an afternoon sleep, because I’m used to it. Overall my fatigue levels have improved now - maybe I’m used to it, the fear factor is less, and I’m comfortable being tired and fatigued. I can be tired without being fearful.

More recently I feel more confident to challenge myself - for example working with my running, podcast or my public speaking - I can cope working on this at night even without a nap. I still feel fatigued, but I can cope - it’s a manageable level. In fact, doing my podcast interviews with really long conversations, I definitely noticed the fatigue creeping in. Overall the podcast was really beneficial for me - almost like the perfect brain training exercise - but a negative was the fatigue. I feel proud though, that I was able to push through the fatigue and do this. It was challenging, it helped me improve my speech and outweighs the fatigue. The same with physical activity - if I have a run and I’m tired - I can cope without collapsing.

Eight years ago, I was not aware of why I was fatigued - but I have realised that every effort and doing “normal things” - like walking, speaking, going to therapy - and even looking at screens (eg watching TV, using my phone and computer) - causes fatigue because it involves using my brain. Granted the connotations of being fatigued is a negative, but I feel it’s a good thing overall. Simply because if I test myself, I will improve quicker - after all, the overall goal with my recovery is to improve my quality of life.

Managing fatigue is like a marathon, not a sprint. You have to train yourself and work at it. My fatigue is definitely improving and I will love it to remove my life, but in reality, it is very unlikely. Overall, I am pretty lucky though - even though I’m fatigued most days, I never feel that I can’t go on, so I am very thankful for that.

All the best

Paul