An Elusive Solution

Every time I’m ready to share a post I pause and have second thoughts about hitting the ‘publish’ button. The hesitation comes from a fleeting thought that I’m still on the same topic, ‘living with ABI’. The notion that haunts me is ‘how about a new topic.’

What makes me ‘unpause’ and share once again is remembering those who tell me I’ve helped them understand something about themselves. What seems mundane to me, because I live it every day, offers some enlightenment to someone else. Even though readers let me know, that pause still haunts me.

Brain Fatigue is _______ ?

What extends the pause a bit longer are the times when I’m experiencing difficult days. For me a difficult day is experiencing a loss of energy, usually in the form of brain fatigue. That’s what I’m experiencing this week. I call it brain fatigue because I’m not able to describe what is really going on. I experience a build up of pressure in my head. I don’t feel fully alert. I feel a level of anxiety that lacks a focus. This is a partial explanation. The fatigue is a manifestation of other processes in the brain that are taking a back seat.

Manifestations

As part of the brain fatigue I notice a setback in my ability to remember. I find myself once again searching for the right word – usually it’s the nouns that go missing in action, or innocently show up late. I once again find myself forgetting what I set out to do, losing my train of thought, losing focus partway through someone sharing a thought or experience – appearing rude and yes, feeling somewhat annoyed with myself.

Part of the brain fatigue is that it puts me at risk of nightmares. Impressionable events that happen during the day have a likelihood of invading my sleep and forming the background to a story that I would prefer to extricate myself from. The brain fatigue adds a complicating factor of losing my ability to distinguish between reality and dream. So I’m totally unaware that there’s an exit button – it should be labeled “Nightmare exit”.

As part of the brain fatigue my physical agility experiences a set back as well. Walking once again becomes more challenging – keeping my balance on uneven terrain becomes unpleasant, before starting down a set of stairs I hesitate, making sure I’m properly oriented. Loss of agility somehow translates into being unable to relax my body. Getting proper sleep goes out the window because I’m not able to relax – each night being only a partial benefit, then waking up in the morning feeling like I’ve completed a marathon – though sometimes I’ve only slept long enough to have run a partial marathon.

Signage for the Labyrinth at Collingwood Arboretum

Managing to get a two hour sleep (can’t really call it a nap) later in the day is helpful though it means finding the initiative to navigate the groggy re-emergence from sleep. Finding my way to a reasonable semblance of consciousness can feel like moving through a maze. Doing it twice in one day doesn’t lead to a greater level of familiarity because each time the maze has a few new turns and switchbacks.

After a couple days of brain fatigue a combination of frustration and disappointment begins to set in. This makes me inclined to withdraw and shut out much of the world – a smaller world feels more comfortable. While a smaller world has greater appeal my experience prompts me to look in the opposite direction. So I tenuously venture out.

Venturing out

Today, I chose to spend a couple hours with my four year old grandson. When I arrived he first sat with me as we tackled a crossword puzzle he had started. He was excited to eventually have figured out a dozen clues and filled them in. This was followed by a couple games of chess. Then he very much wanted to play Stratego (TM) and very pleased with himself when he won. What wore me down was helping him design and build a layout with his wooden train track.

Daily crossword puzzle

Spending time with him like this is both very motivating while also physically draining. His eagerness to do and learn propels me beyond my immediate condition and share in his sense of wonder and excitement. When I told my grandson I was getting tired he helpfully suggested that I read him a book. After he chose a book he changed his mind and offered to read it to me. After reading it twice he went on to discuss some of his reading exploits.

Catch 22

Meanwhile the recurrence of mental fatigue keeps me from doing some of the things I want to do. The maintenance items that beg my attention continue to wait. Some of the repairs which would have been easy to do pre-ABI are much harder to plan and complete.

Hopefully I’ll get a good night’s sleep in the next day or two. That will be a signal that my brain fatigue is subsiding. At the same  time, proper sleep is key to minimizing the brain fatigue. It becomes a ‘Catch 22’ situation; I need the sleep to clear the brain fatigue, but the brain fatigue needs to clear so I can get some good sleep.

One activity that seems to help me reduce the brain fatigue is cycling. It’s repetitive and things happen slowly – much slower than driving a car. While it’s repetitive, it’s not a boring activity. The scenery changes and I’m moving at a pace that enables me to see things that are just a blur when I’m traveling by car. At this time of the year I’ve been able to scout out some wild grapes that have sized up nicely or spotted some abandoned trees with apples begging to be picked.

Cycling, or an activity like that, involves using all my muscle groups. Walking would accomplish the same but I prefer the scenery to change a bit faster. By exercising my muscles it makes it easier to relax when I lie down. The beauty of cycling is that I can make it as easy or as strenuous as I like. Running is not an option as the jarring motion of each step causes a headache to surface in short order.

In working with my brain coach, the goal is to avoid sensory overload which easily leads to brain fatigue. I’ve been coached to become my own detective in recognizing which activities contribute to sensory overload. What puzzles me is that I’ve been unable to determine the cause of my most recent encounter with brain fatigue. And so the detective work continues. And so the training with my brain coach continues.Intriguing and a blessing.

Ambiguity with Swimming & Sleeping

Summer rejuvenation

The risk of swimming for me is not the risk of being carried out to sea by an undertow. This is not a matter of my swimming ability because I tackle open water knowing my swimming limitations – I’m a novice at best.

The risk of swimming is a matter of getting in over my head. Well now, that sounds like I just contradicted myself. Let me explain.

Swimming puts me at risk of Sensory Overload

Most summer days going swimming means going down to Victoria Beach and attempting to get into the frigid waters of Lake Ontario. Attempting this puts me at risk of experiencing sensory overload. Adjusting to a major temperature change, air temperature 15 Fahrenheit degrees warmer than the water temperature, is the significant factor. Add to that the intimate nature of water against one’s skin and the effect is compounded. With ABI regulating temperature differences is a real challenge. If my sensory loading for the day is low my risk of getting in over my head is unlikely. If my sensory loading is higher than I realize then I definitely run the risk of experiencing sensory overload.

Swimming is a great way to Minimize Sensory Overload

In my experience since living with ABI I find swimming an effective way to minimize the likelihood of experiencing sensory overload. Swimming seems to provide a combination of benefits. Moving around in the water is soothing and relaxing in a way the off loads my sensory build up. At the same time swimming provides the opportunity for a vigorous workout. The vigorous workout allows me to relax and get a much better night’s sleep. Being a novice swimmer entering the water invariably becomes a vigorous workout.

My Conundrum

Invitation of sand, sun & surf

Unfortunately swimming will have one of two opposite effects on me, depending on which day it is. There are days were I very much would like to go for a swim, anticipating the relaxing benefits. When I am unsuccessful in getting into the water, I am doubly disappointed. Being unsuccessful in my attempt to enter the water means I have reached sensory overload and will need to take other measures to reduce the effects. If I succeed in getting into the water it is a double blessing. I know my sensory loading is under control and the activity will further reduce my sensory load for the day.

Fooled again

Recently I went swimming with the anticipation of enjoying the benefits of a successful swim. I arrived at Victoria Beach, and following a familiar routine of acclimatizing my body to the water temperature I did experience a wonderful swim.

To my disappointment I did not sleep well that night. At one point I experienced a troubling nightmare. By morning I woke up fatigued and having only managed seven hours of restless sleep. This was far below my optimum of nine hours a night.

Sand formations below the rippling surface – Georgian Bay

The difficult night after having had a successful swim left me quite puzzled. What went wrong. If my sensory loading had been too high I never would have made it into the water. I tried to replay the previous day to try and understand what happened after my mid-afternoon swim that wreaked havoc on my night.

The only thing that came to mind was some news that a friend of ours had shared with Jane and I. Gradually I recalled my response to taking in the hurtful news. As the story unfolded I was beginning to feel overwhelmed. After listening and responding with questions for about ten minutes I quietly walked away. I did not excuse myself because I didn’t want to interrupt the sharing.

A half hour later as Jane and I were driving home we briefly commented about the loss and hurt that our friend had shared. We reflected on it for the ten minute ride home. For the rest of the day I didn’t give it anymore thought.

Since my ABI, I have been experiencing nightmares occasionally, something that was totally foreign to me pre-ABI. Each time I have experienced a nightmare I can trace it to an event from the previous day.The trigger events are either one of suddenly feeling vulnerable or as in this case an event of significant loss. I was unaware of the depth of the loss and how it had touched me till I went to sleep. It was in struggling to shake a nightmare in the early morning hours that I awoke to the depth of the hurt that I had vicariously experienced.

I count it a blessing, though it is a strange experience, to have intensity of my empathy for another person’s loss affirmed in my sleep.

Did that Really Happen

 

Sea Star on the Move

A sea star or sand dollar might take about ten minutes to move half its body length. This is what’s so amazing. Before seeing the sand dollar below I had no idea that they even moved. Without mindful observation I was just seeing dark sand dollars and white, sun bleached ones. Once I realized the dark ones were alive, I found many more that would leave a trail as they scavenged the ocean bottom.

To improve my quality of life, while living with ABI, involved recognizing signals that my body gave me as being significant. To recognize my body signals is as significant as realizing that a dark sand dollar is a living, moving organism.

Sand Dollar on the Move

In the past half year I have become more in tune with the signals my body sends me. What is most beneficial is recognizing the signals soon enough to allow me to take measured to avoid sensory overload. Early on I would not recognize the early onset of sensory overload and would stop participating in an activity once I had ‘crashed’. The problem with living that way is that it would take me up to 4 days to recover from a crash. While recovering, life comes to a grinding halt due to elevated levels of fatigue, headache and convincing myself to take measure to not contribute further to the sensory loading.

In time I have become attuned to some of the early signs. Since the early signs are subtle, they are easily overlooked if I am intensely focused on an activity. At other times I miss the early signs because the onset of sensory overload comes on gradually and the fatigue which builds up gradually dulls my awareness of impending sensory overload.

Unfortunately, with an Acquired Brain Injury (ABI) the signs are initially quite subtle. If the pain registers as immediately as hitting ones finger with a hammer that would make detection easier. However, if the side effects of an activity while living with ABI were as obvious as experiencing a pinched finger, it could signal that I’m in a catastrophic state. I base this on the notion that the greater the pain the more urgent the remedial action must be to prevent serious or life threatening harm.

In the past year and a half I have gradually begun to indentify and make note of some useful early warning signals. Here is an inventory of what I have learned:

Humming (visible)

This was one of the first signals that I recognized as an early warning. I would find myself humming or more accurately, just vocalizing to create a vibrating sound. The vibrations were soothing or relaxing. At first when I would vocalize I failed to make the connection that this was a signal that I was approaching sensory overload. Eventually I made the connection but that didn’t mean I recognized it every time it happened.

Eyes watering (partially visible)

This was also one of my first signals I recognized as an indicator that I was reaching my limit. If I didn’t heed it at this point I would soon find myself in tears. That’s much harder to miss.

Walking pace (partially visible)

This one dawned on me about five month into ABI. I was shopping with Jane, pushing the grocery cart and found it took concerted effort to keep up with her. When I would take a side aisle to retrieve an item I noticed that my pace was much slower than usual. By the time that shopping excursion was done, about forty minutes in all, I was in sensory overload. Even though this experience made it clear that this was a useful signal, time and again I would fail to recognize it.

Losing focus (partially visible)

Initially when I would lose focus I would think I had lost interest in what the person was talking about. At first that seemed no different than pre-ABI. Gradually I began to recognize the loss of focus as a signal to remove myself from the situation. Attempting to appear interested and forcing myself to concentrate on what was being said would eventually catch up with me. This could entail listening to a story telling, a drama reading or some other form of a verbal presentation.

Double vision (invisible)

At certain times I have noticed having double vision. The first couple times it happened while I was driving. The first time I figured it was a result of not wearing my glasses. When it happened again I was puzzled. I have been able to determine that it is related to driving. That is the only time I have experienced the onset of that signal. I have not been able to make a connection between the length of time I have driven or the type of roads I have driven.

Restlessness (visible)

This signal is somewhat similar to being unable to focus except that this signal included physically needing to change positions or move around.

Increased level of breathing (visible)

It took me a long time to recognize this signal. The subtlety with this signal is that it’s very normal for one’s breathing to change as one’s level of activity changes. I stumbled across this one day while dealing with some details of setting up for a picnic. While the setting up did not involve lifting anything heavy, my rate of breathing would indicate that I was moving some heavy weights around. Then, out of curiosity I checked my pulse rate and found it was at a level that indicated I was doing a low level activity.

Headache level (invisible)

After having gone through a few months of natural healing, the intensity of my headaches was starting to fluctuate throughout the day. I began to recognize the change in intensity of my headache began to relate somewhat to the demands the activity was placing on my body. My headache would indicate that the demands were becoming too high. The changes would happen whether the demands were physical, cognitive or emotional.

Mental fatigue (invisible)

At times, when attempting something complicated, I would find myself just not able to get my ‘head around it’. I knew I had to back down from what I was doing. At times my mental fatigue is accompanied by a “buzzing” sensation in my brain. This sensation is different than the tinnitus or constant ringing in my ears.

Social withdrawal (visible)

At times I’ll recognize myself withdrawing from a conversation. While this happens occasionally in a one-on-one conversation, it is more likely to happen in a group conversation. A close friend or spouse is usually quicker to recognize this signal before I do. The best way to counter this is to walk away.

Emotional sensitivity (partially visible)

This signal is not an easy one to gauge. One factor in my response to a situation is the emotional intensity of the event. One helpful point of comparison is seeing how others are responding to the same event. However, that has its limitations because everyone comes to an event with a different background. I know that attending a Remembrance Day ceremony is emotionally very intense for me regardless of where I am on the sensory loading scale that day.

Visible and Invisible signals

I refer to these indicators as signals. As signals, some of them are behaviours that happen in response to how I’m able to handle myself in certain situation. Some of the visible signals are only noticed by a careful observer because they can easily mask as neuro-typical behaviours. Though some casual observer might notice that something is ‘off’ but not realize what is happening.

Even though some of the signals are visible an acquaintance wouldn’t necessarily think anything of it.  If someone notices me withdrawing from a conversation or humming they wouldn’t necessarily see it as something to point out to me to make me mindful of how I’m doing.

With the high number of signals I have identified over the past year and a half, it might be surprising that I often miss the early warnings. The main reason is that many of these signals are not like an in your face PA announcement. The signals are subtle and don’t stand out from other sensory input I’m processing.

I have posted these signals on my kitchen wall. I hope that seeing them listed will help me be more mindful of these signals as they surface.

Being attuned to my early warning signals is my most reliable means of improving my quality of life. The complicating factor is a condition which is called anosognosia, being unable to recognize my own condition. Living with ABI means there are times that I`m not aware of my condition. That is when I need to trust the observation or sometimes the intuition of my caregiver. Sometimes I accept my caregiver`s decision without comment. Other times I engage in a discussion to convince her I’m fine with attending a particular event. At times I think I`ve won the debate only to realize later that I actually lost.

Setbacks help me heal

Imagine the potential setbacks

Recently Jane and I chose to attend a wedding for a niece. Accepting the invitation meant making a five hour trip, arranging for overnight accommodation,  and attending the wedding ceremony. I knew I would have to monitor how much I could participate in the ceremony and celebrations.

Since attending this wedding involved a lengthy drive we decided to make it a short holiday rather than a quick drive up and back. This seemed reasonable on the face of it, as we had recently completed a successful three week holiday involving some long distances.

In hindsight I realized that having made one successful trip does not preclude that the next trip will be successful. All trips are not created equal. The success of the first trip gave me a laissez faire attitude about the need for careful planning for this much shorter trip.

The success of the major trip lay in the extensive details of the planning. (You can read about it At Risk of Over Planning) Most notable was the flexibility of most aspects. Arrival dates and times were flexible. They were easy to change without serious penalty or disruption. Sites to visit were not pre-booked. The trip involved just the two of us. Social interaction with anyone else was either optional or incidental.

Looking back on the recent wedding trip, it most notably lacked flexibility. The trip was structured around a schedule. Secondly, the ceremony obviously was in a venue determined by someone else. Thirdly, attending involved extensive social interactions. Weddings have expectations. For the sake of the bridal couple you want everything to go well, including guests blending in and having a positive and memorable time.

Tale of Two Trips

(If you are looking for a quick read, jump to the ‘Lessons Learned’ near the bottom.)

This ended up being a tale of two trips. Other than both being called trips, in all other aspect they were different. The contrasts were most notable in the outcomes. The first one included episodes of only minimal sensory overload. The second trip was an experience of ongoing sensory loading. The planning for the second trip was rather neglected. Like the behaviour of a neglected child the outcome should not have been a surprise.

We did not get the car properly packed the night before. That meant doing some last minute packing. To compound the matter, some last minute tasks needed attending on the final morning.

I ended up starting the trip with some unnecessary sensory loading. Making a rushed mental inventory, hoping we hadn’t left anything important behind should have been completed the night before.

The change in the means of travel from a pickup to a car ended up being rather significant. The car was harder to pack and organize than the pickup truck. The handy labelled tote boxes didn’t fit in the car. Therefore things were harder to find when needed.

Trying to remember where things were packed added to the cognitive sensory loading. Making successive attempts to locate things compounded the matter.

Having  upgraded our accommodations from a tent to a cabin, we thought it would be enjoyable to share it with another couple we have traveled with in the past. While this turned out to be a pleasant experience, it did not give me the necessary psychological space.

The additional social interactions adds to the sensory loading as does the need to adjust to new routines. Retreating to a tent or cabin would normally be an opportunity to alleviate some of my sensory loading.

With a wedding, someone else chooses the venue and plans the celebration format. The banquet hall meant engaging in polite conversations, having background music and listening to stories and presentations.

The music, the crowd of people talking, the presentations were all sounds that would reverberate off the walls. Even with musician ear plugs, the sensory loading hit me full force within 20 minutes. By the end of the first course I was fading. Fortunately Jane noticed. Being distracted by the busyness of the event, I had failed to be mindful about checking in with myself. Taking a 15 minute walk reduced my sensory loading enough to get me through the dinner part of the event.

The next morning we hosted a brunch for the extended family. As ten o’clock approached about 20 people descended on the picnic area outside our cabin. As we started the brunch I soon realized I was approaching sensory overload. I took my plate and walked away.

It was too early in the day to handle the busyness. Engaging in conversation was out of the question. I was mindful of the fact that I had shed very little of the sensory loading from the wedding celebrations of the previous night.

The brunch lasted about an hour. By then the deadline for vacating the cabin loomed large. We had already requested an extension so this was like an eviction ultimatum. I struggled to help move things out of the cabin and get things packed with some semblance of order.

It was not even noon and I was already close to my sensory loading limit. The cognitive demands of interpreting instructions related to clearing out the cabin and packing the car was pushing me close to sensory overload.

When we left the campground we had about a ninety minute drive ahead of us. We had made plans to visit at my brother’s cottage for a few days. I knew I was better off not doing the driving. Since the drive was relatively short I thought it was quite easily manageable. All seemed to go well. We had made one short stop. That left us with about a hour to go. The last part of the drive was eight kilometers of gravel roads with various sharp turns and steep hills. About two kilometers before we reached our destination I was fully into sensory overload. At that point I had lost the ability to think clearly enough to suggest pulling off to the side of the road. Continuing in this way for the last two kilometers compounded the effects of the sensory loading.

Travelling the gravel road, combined with the acceleration and braking to navigate the hills and turns put me into vestibular sensory overload. Adding that on top of an already high sensory loading, I was not able to speak coherently, never mind trying to come up with any logical suggestions like ‘stop the car.’

DisAbility rail chair from boat to cottage

We went ahead with the plan to stay at the cottage for four days. I came to realize over the period of four days that my sensory loading was not being alleviated. Being a guest in someone else place is not the same as camping with the two of us. Routines are unfamiliar, you want to be accommodating to the host. The cottage was accessible only by boat. The ride across added to my sensory loading, once again putting me over the top.

The challenge in getting across the lake added to the vestibular sensory loading which unfortunately topped up my sensory loading. The boat ride was a new experience since my ABI. Had I known how quickly it put me past my limit, this visit to the cottage would have been vetoed in the planning stage. Being in familiar space with familiar routines is a key part of alleviating sensory loading.

Lessons learned

Ready to capitulate to the demands of the Bay of Fundy

The trip had put me through a ten day stretch of living on the edge of sensory overload. Ten days on the edge did not occur without inadvertently dropping over the edge multiple times. When my environment pushes me beyond my ability to absorb and process the sensory input my ability to function operates on a very narrow bandwidth. What often compounds the issue of sensory overload is the inability to recognize how to exit from the situation.

I have developed strategies for exiting places and situations that I know could cause sensory overload. When I know a particular place or type of event will put me at risk of sensory overload I will plan an exit strategy ahead of time. It’s the new or unfamiliar situations that present the real challenges.

Dropping over the edge of sensory overload means I have lost my ability to take control of my situation. There is a helplessness. The helplessness comes from not knowing how to exit from the situation. When I reach my sensory limit, my ability to reason, think logically, or problem solve is seriously compromised. I also lose my ability to speak coherently so it’s hard to let someone know I need help or how to help.

Our next trip will be a one week stay with my son and daughter in law. I need to heed the following parameters:

1. Keep each day flexible. Leave room to alter plans in response to my status.
2. Keep socially demanding situations brief
3. Keep a regular sleep schedule
4. Allow time and space to alleviate sensory loading; brisk walking or cycling
5. Attempt new activities in small doses
6. Eat regularly, meals and snacks
7. Take a break every hour when traveling

Lessons learned; the better the planning, the better the experience. Healing doesn’t just happen. It seems like I need to be an active participant in my healing journey.