Fatigue is one of the invisible aspects of life after stroke. Post-stroke fatigue is not like typical tiredness. Unlike usual tiredness, this fatigue does not subside with rest and many people find that the tiredness does not directly relate to their activity levels on any given day.
Living with fatigue and its unpredictable nature can be very frustrating and for some it can be very disabling. The fact this is an invisible effect can make it hard for family members, friends and colleagues to understand.
It is not currently understood why stroke causes fatigue, although it is likely to be because of a mixture of both physical and emotional reasons. There is currently no specific treatments or medications for post-stroke fatigue, however self-management is key.
What is it like living with this fatigue?
Every experience is different , below is how stroke survivors living with post-stroke fatigue describe their experiences:
“It’s been Two and Half years since my stroke and extreme mental fatigue still affects me every day. It’s inconsistent and unpredictable.”
“I try to pace myself, the fatigue makes it difficult to plan – so I take it one day at a time. If I have plans I must completely rest in the day(s) leading up to them and a few days after any event or outing may be needed for recovery time.”
“It took me a long time to understand that rest means no noise, TV, reading, chatting, etc. Improvements do happen, but they are subtle and take a long time. Be patient with yourself and don’t feel guilty for resting – it’s a necessity!”
“I find the heavy fogginess distressing. Some days my brain feels OK-ish, some days like concrete, some days like wading through mud and on others like walking through porridge. I never know what the next day will be like. I do what I can most days, sometimes pushing myself too hard”
We also asked our members their best tips for managing post-stroke fatigue and we have categorised them into 5 Key Tips.
1. Learn Your Triggers
Every person will have different triggers that can make their own fatigue worse, from the obvious; like working alot to the less obvious such as noise levels or emotional distress. Our members shared their tips for learning their triggers:
“Write down what makes you tired – it’s sometimes surprising.”
“I’ve learned that my optimal number of sleep hours per night is 10. Often, I need to make up hours on the weekends, but after 4 years trying to function on less than 8 hours, it’s been life-changing”
“It is important to learn your own warning signs that you are pushing too hard. For me this can be an odd feeling on my head, my affected hand curls up or my affected eye droops more. My speech gets worse. That’s when I know I must rest.”
2. Plan Your Day
Lots of people find planning their days to work around their triggers can be useful in managing this condition.
“I do activities in morning as I am more energized.”
“Plan your day/week with lots of breaks. Be realistic and pace yourself. Find a way to relax that also helps your brain e.g. Yoga, meditation. Remember It’s OK to say ‘no’.”
“I had the best advice after I went downhill in the early days following my stroke. When I had pushed too hard I did too much and then couldn’t do anything for weeks. The advice was “Do a little less than you think you can do” and then eventually you will be able to do increasingly more without the fatigue taking over”
“I have one day in the week where I rest. It certainly helps me. I work hard, I’m up at 6am and earlier every morning. I’m usually in bed by 7pm in Winter, watching telly and resting.”
3. Rest, Rest, Rest
Lots of people say they feel too guilty to rest or worry that people will think they are lazy. However, lots of stroke survivors say to manage this you must move past these feelings and rest when your body tells you to.
“Rest before you get tired. Take regular rests. Noise cancelling headphones, although expensive, can really help when things become overwhelming.”
“I have a post-it-note on my kitchen cupboard that says:“Some days are better than others”
“Try not to feel bad if you are absolutely exhausted – your body is telling you to rest. If there is too much noise or action going on around me, I now shut down. I must go in a quiet room, remember it is your brain injury causing this, and it’s not your fault, much love to everyone suffering from this”
“When you are tired don’t fight it. Go to bed and rest”
4. Take a Holistic Approach
As with all things balance is key and looking at your lifestyle can really help. Is your diet balanced and does it contain enough nutrients to help combat your fatigue? Are you moving or exercising when you can and to your own pace?
“I pace myself, eat healthy and exercise and have a nap when needed”
“I’m recovering from 2 strokes and 1-2 hours exercise a day seams to help me.”
“I found a sertraline antidepressant had a good impact on my mood. It’s a major trauma you must come to terms with.”
“Personally, balance is imperative! Balance between rehabilitation and rest.”
5. Try to Educate Those Around You
“6 years ago, I had my stroke and getting my head around being tired mentally, but not physically, has been a huge shift in my life. I listen to my body and rest when I need to. I have a routine now where I sleep for two hours in the afternoon. If I don’t I get headaches and confusion and start to make stupid mistakes – the compromise is sleep then I’m OK for the day. If I go out at night I make sure I sleep beforehand. each person does find their own rhythm and our partners can learn our new way of life. But these things need explaining to the people around us. Joining the Different Strokes Facebook page helped my partner to understand me.”