As part of Action for Brain Injury Awareness Week, we share Julie’s story, who suffered a stroke in 2018 and was treated at Icanho, Livability’s acquired brain injury rehabilitation centre. She tells us what it’s like living with the effects of a stroke and how counting spoons has helped her.
Before my stroke, I ran my home, had a job and a full social life, drove and was independent in all ways. Within a few moments in the early hours of one morning, my life changed forever.
Over the months since my stroke, I confided my innermost difficulties, hopes and fears for the future, with my amazing family and a very special friend. They have seen at first-hand many of my difficulties in concentration, balance, sensation, thinking clearly, information processing and short-term memory loss, and the emotional challenges these have caused.
I had to learn how to cope with overwhelming cognitive and physical fatigue. Initially I had to sleep for an hour after a shower before I could get dressed. If I was able to get out and met someone I knew, my heart would sink as they told me ‘you look really well!’. Because I looked good on the outside, the assumption was that all was well.
During one of my occupational therapy sessions at Icanho, I was introduced to the ‘spoons theory’. This explains that most healthy people start the day with sufficient energy and relatively unlimited possibilities.
As I explained to family members, when I wake in the morning, I have to determine how many ‘spoons of energy’ I have, to get me through the day. So this could be around 12 spoons for that day. I usually wake up with a ‘morning fog’ and having to adjust takes one spoon. Due to dizziness and fatigue, showering costs me another spoon, washing hair another, and getting dressed another. Emptying the dishwasher and making breakfast and a lunchtime snack would be two more spoons, and would take two hours.
My family ‘got’ this approach to understanding my difficulties. Now when I can’t get out to a busy, overwhelming venue, they say ‘will it take up too many spoons?’ and kindly offer to rearrange their plans accordingly. It’s difficult to turn down invitations, which means often staying at home, but I have to make choices about who I spend my time and energy with and on.
I find I can use spoons theory to measure the progress in my recovery. Now I usually need one spoon to take a shower, compared to three a few months ago. I’ve found the hardest thing to learn and come to terms with is that I have to slow down. An hour of intense concentration is still so effortful, but I would never have been able to do this before I had the opportunity to attend Livability Icanho and experience the amazing wraparound care I received there. I can’t do everything I may hope to do in a day. It’s a long process but I am determined to be the best, although slightly different, person I can be.