Fatigue (A stroke side effect)

One of the worst side effects I live with from my stroke is the side effect of disorientation and confusion.  At first, after my ischemic stroke to my spinal cord, disorientation and confusion occurred frequently.  Over the years I have learned life hacks to prevent both the disorientation and confusion.  For the most part, these life hacks work – last weekend at a Toastmasters speech competition they failed.

One of the first lessons I learned was that side effects are the lovely parting gifts one receives when you survive a stroke.

As if the loss of my abilities to run, walk, stand, turn myself in my own bed, feed myself, dress myself and control my own bladder was not enough of an impact on my life, I also learned that I was now more susceptible to fatigue.

I was quick to learn that fatigue would occur more easily than it did before my ischemic stroke to the spinal cord.  This was not acceptable to a person who has ADHD and was constantly on the go from before sun up until almost midnight every day before my stroke.

Post ischemic stroke changed fatigue for me!

Before my stroke, I would only feel fatigued if I had burnt the candle at both ends for multiple days.  When fatigue did hit me pre-stroke I would just feel tired and a few extra hours of sleep would remove the fatigued feeling that was draining my body of energy.

I no longer need to push myself non-stop for a few days before feeling fatigued.  Since my stroke fatigue usually sets in when I am over stimulated for long durations of time and/or when to many things come at me simultaneously.

But wait…there’s more!

If the fact that fatigue can frequently occur with additional trigger scenarios, now fatigue can lead to serious disorientation that can quickly be accompanied with /confusion.

When I experience disorientation and/or confusion, I have been told that I have a glazed over look on my face and in my eyes.  Although no one has come out and said this to me, I perceive myself as speaking slower and sometimes slurring my words.

Warning signs means quick action is needed.

The first person who learned how to spot the warning signs before disorientation and confusion set it was not me, it was Kimberly (with the help of her mom, a retired nurse).

Truthfully, I do not know what she observes, but she usually can tell I am going to have an episode of disorientation before it hits me.

It took me awhile, but now I can tell on my own (often before Kimberly) that either I am going to become disoriented soon or at least it is possible if I do not act.

I did not want fatigue, disorientation and/or confusion to limit my life.

At first, the solution was to avoid any activity or situation that could overstimulate me.  This meant that I could only do one or two activities outside of my apartment each day.  I also was forced to avoid noisy environments (such as crowded stores or any place that had large number of people conversing.) These limitations were not acceptable to me.  That was when I decided I was not going to allow my stroke to set limits for me, I would set my own limits.

I pushed myself, doing a little more each time I went out in public in an attempt to lvie my life on my terms – not by the limitations of a stroke.

Life hacks that I use to help prevent fatigue, disorientation and confusion for me.

Crowded and noisy environments still trigger disorientation and confusion.  Fortunately, it does not happen as quickly or as frequently an it did after my stroke, however it can still happen.

I have learned that in a noisy environment if I can focus in on one conversation – one voice – I can either prevent disorientation and confusion from setting in or at least delay it.

Kimberly knows this helps me, so when we are in a crowded area and I start to shut down (become quiet) she will talk to me.  It doesn’t matter what we talk about as long as I am engaged in a conversation I can usually avoid the uncomfortable experience of being disorientation and confused that always leads me to feeling left out of activities I want to participate in.

When I am not with Kimberly or anyone else who knows me, and I am in a noisy environment, I will pop my ear buds in and start listening to my 80’s music library form my Google Play Music account.  That always helps until I can get out of that noisy environment or until someone I know can engage me in a conversation.

Last weekend I failed to use my life hacks, and I encountered an epic fail..

Nothing in life is failure proof (expect maybe death) including the life hacks I have developed to help with fatigue, disorientation and confusion.

Last weekend, I had a long day.  I started by getting to my Toastmasters meeting at 7:30 in the morning.  The meeting started at 8.  During the meeting I had a role.  After the meeting there was a brief meeting on how to use Pathways to achieve your Toastmasters goals.  Then it became noisy and chaotic as e had to clean up the room and get on the road to a competition in Springfield.  We carpooled with our mention to Springfield and visited the entire trip.  We stopped at an Applebee’s in Springfield (on Primrose) to have lunch with a group of a dozen fellow Toastmasters.  Of course, we all visited.  Adding to the noise level was the other customers in the busy bar and grill.  Next stop was the Toastmasters speech competition at the Library Center.

The noise level in the auditorium at the Library Center as loud as there were over 25 Toastmasters conversing and networking before the competition.  During those 30 minutes before the competition I had to find where I needed to be for the briefing of ballot counters (I was to be a ballot counter for the competition).  With a little help from Kimberly (she was busy at her own briefing as sergeant at arm), I found the briefing meeting.

I sat in during the briefing – and that was when I felt it coming on – a huge wave of disorientation and confusion.

After the briefing, I found somewhere that was somewhat quiet to sit.  Kimberly found me, and she knew instantly what was wrong.

I was so fatigued and dealing with the after effects of being disoriented, that I did not know when to leave to help count the ballots.

Next weekend, I am going to Kansas City for the spring conference of our Toastmasters district.  I plan to better pace my activities and remember to utilize my life hacks.  Hopefully I do not have a similar problem there.