Who am I?

I’m a stroke survivor and Student Dietitian with the University of Newcastle. I have been dealing with post-stroke fatigue for over 12 months and have found asking for support to be incredibly helpful. I am one of the most stubborn people out there and tried to push through the fatigue many times resulting in tears of frustration, sadness and anger. Though I know our symptoms will differ greatly I hope that my ongoing experience in learning to accept my new normal can help you or someone you care about prosper.

One of the most difficult things stroke survivors say they have to deal with is post-stroke fatigue. Most stroke survivors suffer from it and I think would benefit greatly from understanding how to keep living on despite it.

Energy Budget

Imagine you have only 5 tokens each day of “energy” and everything you do that takes effort uses one up, this is your energy budget (also called spoon-theory). Like any budget, it is important to accept you are not a millionaire and to know what expenses are coming from your account. After a stroke, our budget is almost always smaller, but we still have one!

Energy Expenses

Feel like you just can’t deal with people anymore? Lacking interest in activities? Your body gets exhausted from doing basic tasks? Struggling more with emotions? This is very common for stroke survivors and is put under the name “post-stroke fatigue” but can actually be a number of ingredients adding up to one big exhaustion cake:

• The brain trying to repair in its own way (neural fatigue and neural plasticity)
• Stroke Depression or Anxiety
• Muscles become tired more easily
• The brain takes more energy to send the same signals
• Needing changes to your diet
• Needing changes to exercise
• Needing changes to your sleep-pattern
• Over-doing things
• Response to necessary medication
• Your environment is hard to navigate

…are some of the many things that can contribute to post-stroke fatigue.

Accepting who you are *now*

What is important is to embrace suffering from these symptoms with self-compassion, yes, it does suck sometimes and it is important to let yourself feel that way. At some point, you will need to challenge those thoughts to stop them from spiralling out of control. I feel it is important to accept your new life as you are now by acknowledging the bad and staying positive in your ability to move forward. Try to think about what is still important to you in your new life and focus on those things. Instead of staying caught up in how difficult something is, become excited about the process of each small step.

The more we can understand and accept our current circumstances the more we can move forward and see where we need a little extra help. “Accepting a negative thing is a positive experience” - Mark Manson.

Watching people fail

I work at an obstacle course and watch many people fail to complete a climbing challenge. They try to force themself to finish, expecting their body to hold out despite being told to take breaks. The people who beat the obstacle are those who stop, taking breaks as often as they want, before continuing on. I feel the difference post-stroke is that sometimes this means emotional breaks as well as for the body.

This is a great example of how we all have limited energy tokens each day for our bodies and mind to work with. By accepting that you become tired easily you can accept how you might fail and allow yourself to take breaks with the idea of winning the long game, taking things slow and steady to win the race and knowing when to ask for help.

Final note

If you are feeling any of the symptoms mentioned here I urge you to contact your doctor and consider seeing a qualified therapist (either counsellor or psychologist) to talk about your issues and make a custom plan to budget your energy each day and embrace your new life.