Notes from the Neuro Café on 5th May 2021.
The session started with a discussion about long lockdown hair, and what would be the appropriate matching attire when venturing out on a mobility scooter, especially if it is a Harley Davidson. Perhaps a ponytail, leather jacket, sleeveless shirt?
Fatigue
The fatigue you may experience after a stroke is one of those things that does not necessarily improve with rest. It is characterised by tiredness, lack of energy and strength and is normal post-stroke.
It can hit immediately or further down the line. You may obtain full physical recovery but you can still experience fatigue. This is the physical impact of stroke on the brain and occurs as your body tries to heal; even the healing process itself can be fatiguing.
Life is demanding if you have had a stroke. You may be coping with all sorts of things - physical changes/disability, learning or relearning skills such as walking, being in a wheelchair and so on. The cognitive load of doing all this is heavier than usual. Also your muscles may be weak from being bed bound, so more energy is required to move and meet various physical challenges.
You may experience emotional changes such as low mood, anxiety or depression which can also have an effect on your energy levels.
Diet and medication (such as medication to control blood pressure) can affect your energy levels, as can changes in your sleep patterns. You may find you have insomnia or sleep apnoiea.
It is a good idea to explain these changes to those around you to help them better understand what you are going through.
Tips to manage fatigue
The good news is these problems generally do get better over time and you will probably find you become gradually more energetic.
Give yourself plenty of time to accomplish tasks. Things will gradually improve as you increasingly build activities to normal levels.
You might like to keep a daily diary to record your activities; look back on it to motivate yourself as you note how you have progressed. It is not always obvious to see how much you have improved since progress is often slow.
Pace yourself - for example, you do not have to do 100 sit to stands all in one go - celebrate your successes and milestones, take your time. Spread out the tasks.
Rest and sleep are very important for recovery. Take naps. Wind down in the evening. Switch off the TV. Read a book, listen to music, listen to a podcast. Drink camomile tea.
Exercise is key in improving fatigue, but make sure you push yourself to an appropriate level. Know your body and when you have had enough.
Food is important - eat healthily, avoid sugary foods.
Some people found they were exhausted by doing physiotherapy. Some prefer to keep to the same exercise routine, others like change, or to change one thing. Everyone agreed that energy levels go up and down and you can be unexpectedly floored after some activities.
You could keep a diary recording your activities, include your mood and levels of fatigue. Structure is helpful. Record the number of repetitions, keep track and work towards a goal.
Fatigue may be present even a year after a brain injury.
Try different activities and see what works for you.
Differences in care
LEGS people had experienced varying levels of care in hospital. Some members felt that staff were too busy filling in forms.
Interesting to note the different perspectives we exchanged - some participants would have preferred to be home and attending regular physio sessions as an outpatient, others found the exact reverse of that.
Returning to work
Returning to work is a big occasion.
If you return to work you might find it challenging at first to perform to a certain standard, or you may need longer or more frequent breaks than before. People are often understanding, but not knowledgable.
You might have to educate colleagues and managers about what you can do; you might need extra time or breaks compared to before. A doctor, therapist or occupational therapist may be helpful in assessing the environment for you.
You could return gradually, an hour or two at a time at first.
A surgeon recollected being able in the past to do just one operation after a serious viral infection whereas before you could do two or three. Do what you can and push yourself a little at a time; build your tolerance. Your health is most important, and you need to manage it.
New Job for Conor, future sessions
We are sorry to see Conor embarking on a journey to pastures new! Conor told us a little about his new role; he will be rotating physiotherapy jobs in different areas in different hospitals. We are all very grateful for the work we have done with Conor. We will all miss him at LEGS and we wish him well! Pleased to report Conor will continue to run the Neuro Café sessions, albeit with a new time of 6pm on Wednesdays. Conor is planning some new outside speakers such as Interact and Laughter Yoga and we are looking forward to them!
Neuro Café next week is at the new time of 6pm on Wednesday 12th May.