LIVING WITH SPOONS

There are many physical effects that brain injured survivors struggle with.

Today I want to share with you the limited number of daily activities survivors are capable of accomplishing.

If boundaries are not established, this will lead to energy crashes.

At the Brain Injured Group (BIG), members like me are taught the Spoon Theory. The theory is that well-rested brain injured folks start their day off with 12 spoons. Getting showered and dressed can take up two spoons.

Making a meal can take away two spoons. Having a phone conversation can deplete two spoons. Five spoons are gone after a grocery shopping trip. A survivor can use most of their spoons by noon. Then what for the rest of the day?

It could mean a lengthy nap, quiet down time and no spoons left to clean the house, make dinner or socialize with a friend. Depending on the amount of daily activities done in a day, a survivor may wake up the next morning and have only six spoons, three spoons or none.

I still struggle with pacing myself. There have been many times I have been in bed for three days recovering from trying to be productive after all 12 spoons were gone for the day.

These are called energy crashes and they are a common symptom which is grossly misunderstood.

With brain injury, it takes survivors so much energy to focus and complete tasks that prior to the injury was a piece of cake. Family, friends and employers often have difficulties understanding how exhausting it is to have a brain injury and only nr capable of accomplishing a fraction of the tasks we did before.

Family members in particular have a difficult time with this because they are used to survivors being there for them unconditionally.

Kids, including adult kids can become frustrated, angry and resentful because their brain-injured parent cannot meet their needs. This is a normal and natural response.

As survivors grieve the loss of who they once were, so do the people around them. Brain injured survivors are often regarded as lazy, unmotivated, selfish, not trying hard enough to get better - the list goes on. Survivors become stressed very easily and this can cause the spoons to disappear very quickly.

For me, any type of stress, negativity and drama causes me to flood or shut down.

Flooding is a whole other topic which I will cover in my next column.

In order to conserve spoons throughout the day and evening, survivors have to be regimented in their schedule.

Generally, I am capable of doing two outings a day, like attending an appointment, grocery shopping, meeting a friend for lunch.

My calendar is like my bible.

I look at my calendar before I schedule appointments and outings in order to avoid overloading myself.

Last minute requests do not work because they have not been planned into the schedule. I inform people that I need at least 24 hours notice and even then, I may not be able to accommodate their requests depending on what’s going on in my world.

Most days I’ve spent my 12 spoons by 5 p.m.

As a result, I rarely go out in the evening because I don’t have the energy to socialize - or even talk. When I’m exhausted, I slur my words like I’m intoxicated from alcohol. I often don’t return phone messages, texts or emails after 5 p.m. because my day is done.

For the purpose of survival, it’s vital for brain injured survivors to set boundaries with the people in their lives.

This is so extremely difficult to do because accepting the new normal for the survivor and others can take a long time.

Say if us survivors had a bandage wrapped around our heads, it wouldn’t be an invisible disability and perhaps the people around us would acknowledge our limitations. I

’ve experienced many incidents of people not respecting my boundaries and for us survivors this is extremely frustrating and upsetting.

Even trying to educate people on the effects of brain injury can be an uphill battle.

I’ve learned to expect that some people will get it and others won’t.

As difficult as it is for survivors to wrap their heads around their new normal, the people in their lives experience the same. For survivors to maintain balance (physical, emotional, psychological and spiritual) and healthy relationships can be an ongoing struggle.