The three batteries of fatigue

Here’s the second analogy we learned, this one focusing on fatigue and recovery. It was a concept we first learned about this week while reading The Ghost in My Brain by Clark Elliott  which I will review in a separate post (but my pre-review thoughts are stop right now and go buy it because it is AMAZING).

Every person with a traumatic brain injury has 3 sets of batteries.

Set A – the first to be used and recharges fairly quickly, sometimes needing only a few hours to recover BUT can only recharge as long as Set B and Set C are fully charged.

Set B – the second batteries to be used, when Set A is depleted. This set takes longer to recover, sometimes up to a few days and only if Set C is fully charged.

Set C – the last reserves of energy. This set is only used when Set A and B have been used and when Set C is used you had better be prepared to give in and rest. This set takes up to 2 or 3 weeks to recover so you have to hope whatever you did was worth a few weeks in bed. This set has to be recharged for the other two to recharge so not much is going to happen in your life until you get the rest needed.

For us this was a groundbreaking way of approaching fatigue. If Jason has only used Set A batteries in a day, his ten hours of sleep usually recharges him to get through another day.

If he’s pushed his limits and gone into his Set B battery reserve we need to plan a couple of slow days so he can recover and recharge A and B.

When Jason was working full time he was burning out his C batteries consistently. He’d follow it with 18-20 hours of sleep on weekends which seemed to get him through enough to keep his job but he had nothing else in his life. He never seemed like himself, now I know that’s because he never had any energy, he was always living on his last bits of energy.

This analogy has quickly made it’s way into our shorthand speak of everyday life, if Jason is on set B, let’s reschedule some things so he can stress. If Jason is on set A I can demand he makes me dinner (sort of kidding!).

Fatigue and Weight Watchers

Here is the first analogy we learned regarding fatigue and energy conservation Post TBI. We used it a lot to explain our situation to family and coworkers. ‘

First you must understand the general concept of weight watchers – it is a point system for how much you can eat in a day. You have a total number of points you can eat and foods all have their own point value. You can ONLY eat enough to fulfill your points for the day.

Brains (especially post TBI brains) are similar. You get a certain amount of energy and you can ONLY use that energy. Then fatigue sets in and every other symptom spikes.

Activities such as brushing your teeth, going for a walk (in Jason’s case – this would obviously be different with physical impairments), showering might be carrot sticks in weight watchers terms, maybe one point. They use your brain but don’t seem to be very taxing and therefore won’t immediately suck up your energy for the day.

Watching television and reading might be bread, let’s say two points. Slightly more energy being used but you can still imagine if your day was spent brushing your teeth and watching television you could have a pretty long day (in TBI terms).

Driving to work and working – that’s your chocolate cake. It’s thirty points on it’s own. It’s exhausting and is going to use up most of your energy points for the day. If you’re going to be eating chocolate cake every day you had better only be eating carrot sticks at any other time. And that’s how it is with TBI, if you are working, you need to make significant changes to save your energy in other ways and parts of your day.

Other activities such as family reunions – loud, lots of names to remember, long day out of the house can also be chocolate cake. It really depends on what activities you find the most tiring as to how you apply points to your daily life. The general concept needs to be remembered – no more points than you have for the day.

 

**I am making up the point values as they apply to foods, I actually have no idea how many points the foods I selected are worth**

Fatigue

Understanding the way fatigue effects an individual after a brain injury is, in my opinion, one of the most important parts of recovery. I’ve read about, and witnessed, how all other symptoms can get significantly worse once fatigue sets in.

Fatigue post TBI seems to be different than pre TBI life.

First, it sets in earlier. Where pre-TBI Jason could fly across the world for a few meetings and never miss a day of work upon return – post TBI Jason struggles if we change his sleep schedule by half an hour. Before Jason could survive on 5-6 hours of sleep a night for months on end, he now needs at least 10 hours a night to function. I speak of our experiences but in each book we’ve read the authors experiences mirror Jason’s. In support groups it seems to be one of the symptoms that is hardest to live with.

Second, it set in unexpectedly. Post TBI having to carry out a conversation, or answer emails can prove to be exhausting. It is also sometimes called cognitive fatigue because it tends to be brought on by completing “brain work”. For Jason skills such as multitasking, planning, decisions making, prioritizing, listening to instructions, remembering lists are all extremely tiring now. We have literally had days where Jason might “only” need to make two calls with specific questions for each caller and write an email about the responses and completion of that task might require that he take a nap. These were tasks that were done while also making dinner and training our dog before!

Third, it takes longer to recover. This has been the hardest lesson for us (in fact one year later we have only just learned a good analogy for this, it will be a separate blog post!). Previously a quick twenty minute nap might have been enough to recharge Jason if he was tired (usually this only happened after coming back from China or Australia). Now if he’s pushed his limits it takes a 1-2 hour nap. If he stays up a half hour late it seems to take another hour or two in the morning to make up for it.

Fourth, it can’t be ignored. Without fail I have heard this message from people with TBI and strokes. Once fatigued they are done. Pushing through it (as everyone seems to try) tends to lead to a worsening of other symptoms. I know back when we were naive and working with a doctor that didn’t understand brain injuries we tried to push Jason through the fatigue. Tasks would take longer, Jason’s way of doing things would baffle me, and on really bad days Jason would have a panic attack. Jason is not prone to panic or anxiety and in fact tests showed he is emotionally “resilient” but once fatigue has taken over all bets were out the window.

It is really essential to start re shaping one’s ideas about fatigue and rest post TBI to make the most of recovery. It can be hard to understand so we will be posting a few of the analogies that helped us understand and explain to others in separate posts.

Here are a few other links to understand the prevalence of fatigue post TBI (you really aren’t alone in this!):

http://www.msktc.org/tbi/factsheets/Fatigue-And-Traumatic-Brain-Injury

http://www.brainline.org/content/2010/02/fatigue-after-brain-injury-brainline-talks-with-dr-nathan-zasler_pageall.html

 

The things we say

iStock_000020873846_Small

Imagine you were the driver of the car pictured here. You’d probably be more than a little upset at that damage right?

Now imagine taking this car to the mechanic and having your mechanic take a look, ask about the accident and then say “ Well there’s that one patch of rust over the rear passenger tire, I can definitely fix that up and you can drive home.”

You’d probably be ….less than impressed right?

Imagine how you would rant to your friends and family about the ridiculous mechanic, how you’d describe the damage to your car, the sound at the impact, the tow truck that took your car away. Can you even imagine your irritation if these were among the replies:

 

“ I had a flat tire once too, it wasn’t that bad”

“ It probably just needs to go through the car wash”

“You knew you had to get a new car sometime anyway”

 

It would be a little ridiculous. It’s hard to even imagine people being that obtuse when presented with proof of a terrible accident. In fact if you had visible evidence of this damage I doubt you would ever hear those replies. When people can see the damage I find they are much more likely to accept it.

Unfortunately brain injuries are invisible (http://www.changedlivesnewjourneys.com/hidden-disability-after-brain-injury/) and we got variations of these replies constantly. Jason was bruised and bleeding in the first weeks after he was attacked but once those healed most people seemed to feel that his brain had healed too.

Within a few months Jason’s doctor was encouraging him to “man up” and get over the brain bleeds (FYI this was HORRIBLE and nothing can force brain recovery). He did grant some work from home days for Jason when what was really needed was time off and a rehab program.

Friends and even some family, often answered our stories about symptoms with statements like “I get tired too”, “you’re just getting older” or my absolute least favourite “just be happy you aren’t dead”.

I believe that each time people replied that way they were unaware of the effects of brain injuries and were trying to be positive. They thought we really did need them to offer upbeat responses. Unfortunately the reality is those answers pushed us away and made us feel like we were considered overly dramatic. We were struggling to get through each day and when we discovered we couldn’t be honest about our troubles we just felt more isolated.

It’s hard. I know it’s hard. And it’s easy to want to imagine that your friends and family aren’t hurting as much as they are. But speaking as someone that lived through these awkward conversations for months, it doesn’t help to minimize the struggles. The same way giving advice on fixing a flat tire doesn’t fix the truck.

***

Do analogies help you? Check out these links for similar conversations about invisible injuries

http://hyperboleandahalf.blogspot.ca/2013_05_01_archive.html  (the fish are dead analogy)

http://www.huffingtonpost.com/2014/11/13/mental-illness-physical-i_n_6145156.html 

Treatments do exist

 

We lived for 8.5 months with very little medical help. We were confused, depressed, frustrated, angry. I’d done research online and continued to be upset by our doctor choosing to make up his own timelines for my husband’s recovery and to ignore every bit of research that had been done in the last 15 years.

If you’re struggling with getting people to take your injury seriously – we get it. And sadly we aren’t the only ones! This is just one article trying to help brain injury survivors convince their peers about their injury http://synapse.org.au/get-the-facts/when-they-dont-believe-you-have-a-brain-injury-fact-sheet.aspx

Amazingly we fired our family doctor, found a new wonderful doctor and within weeks had our first meeting at Toronto Rehab.

It was without a doubt the best thing that happened to us in our year.

It started with the phone call advising Jason of his appointment, not only did the person on the phone double check that Jason understood everything that was said, but she also EMAILED to confirm the details and left a message on my phone so that I knew to check for the information.

When we got into the center the receptionist sat with Jason to make sure he understood the paperwork and let me know what was being filled out.

Our first meeting with an occupational therapist and a speech language pathologist was an hour long asking each of us about symptoms and advising us that WE WERE NORMAL!

Then we met with a physiologist who spent time showing us on a model brain where the bleeds were and what symptoms were common with those injuries. He talked us through their program and made sure we were ready to dedicate time to Jason’s recovery. He spent time with us.

The neurorehab program included 2 weeks of assessments and then almost 8 weeks of sessions (2 days a week) with an occupational therapist, a speech language pathologist and a social worker. Jason was also assessed by a physiotherapist but he had no need to have sessions with her. During our time at the program Jason was treated kindly by each person he met and no one ever shied away from questions about his expected outcomes, why some symptoms were occurring or emotional conversations about life at home. I was often included in the social working sessions and his other team members always made a point of letting me know if there were any changes to his schedule.

At one point Jason was examined by a neuropsychometrist to assess his abilities for return to work. Although the assessments were extremely taxing (honestly I think the testing is hard without a brain injury) Jason was really excited to have something concrete to show any changes and help plan his return to work. The neuropsychologist who reviews the assessments  took almost an hour out of her day to chat with me and ask about our home life and make sure that our needs were being met.

The two and a half months we had with Toronto Rehab was hard (the commute alone was tiring -traffic is the worst) but it was a relief to show up every day and know that finally there were people on our team.

I don’t write this to flaunt our good luck at finding an awesome team, although I do think someone needs to brag about Toronto Rehab’s awesome team, but to give you hope that there are people out there that know what they are doing. There are rehab programs and teams that understand brain injury and all the ways it can influence your life. You just need to keep asking for referrals and pleading your case. I know it isn’t as easy as it sounds but it is so completely worth it. Just keep trying until you find a team you fit with.

 

If you are in the GTA and looking for treatment with Toronto Rehab you must have your doctor refer you to the ABI Network (http://www.abinetwork.ca/). This referral system screens candidates and matches you with the best program in the area for your symptoms and injuries.

Links to Toronto Rehab Information sessions: http://www.uhn.ca/PatientsFamilies/Health_Information/Patient_Family_Education/Documents/TRI_Class_Living_with_Stroke_and_Brain_Injury_Workshop.pdf 

and

http://www.uhn.ca/PatientsFamilies/Health_Information/Patient_Family_Education/Documents/TRI_Class_Living_with_Stroke_and_Brain_Injury_Workshop.pdf

The importance of sleep

Changing Jason’s sleep schedule and patterns has been the single biggest influence in his recovery. I’ve mentioned how the early recovery from brain injury involves large amounts of sleep and very little sensory input. Unfortunately we received no feedback from Jason’s physician about the continued importance of sleep so after the first few weeks Jason was only sleeping 6-7 hours a night during the week and 18-20 hours per day on weekends. If we had known then what we know now we would have made sleeping a much more important part of his lifestyle early on in recovery.

The hardest part is convincing yourself that sleep is important and choosing to prioritize a good night’s sleep over a night out or an early morning run. We both had to make changes to our work schedule, we end nights with friends and family early, we refuse to make appointments that require changing our new schedule.

When we got a new doctor she recommended this book by Peter Hauri about sleep hygiene and the importance of sleep. It’s a bit dry but certainly helped convert Jason to prioritizing sleep.

Not into a long read? As recently as June 2015 studies are looking at the link between sleep and memory, this article specifically applies to alzeihmers but makes some other good points about the benefits of sleep. http://www.huffingtonpost.com/2015/06/02/sleep-alzheimers-linked-to-memory-loss_n_7494502.html

http://time.com/3326565/the-power-of-sleep/

If you’re more of a visual learner these TEDtalks are worth watching to get on board with changing your sleep plans.

https://www.ted.com/talks/jeff_iliff_one_more_reason_to_get_a_good_night_s_sleep?language=en (approx. 11 minutes)

http://www.ted.com/talks/russell_foster_why_do_we_sleep?language=en  (approx. 24 minutes)

http://www.ted.com/talks/arianna_huffington_how_to_succeed_get_more_sleep?language=en  (approx. 5 minutes)

Our changes to our routine are coming up in another post, for now take some time to read and learn about sleep and decide what you might need to give up for your health.

 

Keeping community

We’ve taken a significant financial hit over the last year, lost income and added expenses for treatments. We’ve also lost friends and times with family while Jason recovers and I try to hold our house together.

In a spectacularly cheesy way the best help we’ve received hasn’t been the money or discounts people give us because they know we’re struggling. The absolute best support has been when people sit with us and let us talk, and walk that line of letting us have normal conversations and respecting when we need to change the plan due to TBI. There is so much comfort in sitting with friends and family and having a community. Even better when these times were coupled with food because by the time we survived a whole day of living with TBI it was rare either of us had energy to cook.

It’s hard to sit with friends and family in the uncomfortable and hard times but it’s a lesson worth learning. Showing up and talking about the damage, or not talking but also not demeaning the experience, can really help. I love this article written by a local author about the people that show up http://www.durhamregion.com/opinion-story/5675189-neil-crone-writes-about-the-power-of-showing-up/.
It doesn’t have to be any big spectacular plan, just show up.

Shameless bragging

 

Thanks to everyone that read and shared my letter to the attackers! It’s been featured on a few other brain injury blogs such as these:

http://survivingtraumaticbraininjury.com/2015/07/11/tbi-tales-a-letter-to-attackers-jasmine-oldham/

https://brokenbrilliant.wordpress.com/2015/07/12/tbi-tales-a-letter-to-attackers-jasmine-oldham/
These are both amazing blogs that have been running longer than we’ve even been living with TBI. Please take some time to read their articles and learn more about TBI.

So you love someone with a brain injury…

It’s hard to be in the position to support someone with a brain injury. In our experience there is a gap in understanding how the changes in behaviour and personality relate to the brain injury and unfortunately if things like self awareness or word finding are effected you can’t always count on the person with a TBI to make the connections for you.

I can’t imagine dealing with our last year without access to the internet. Google traumatic brain injury and there are a lot of groups and articles that can help make fill in the gaps in your knowledge or lead you to support groups (God willing we will one day be one of those helpful websites!). This article on Huffington Post has quickly become one of my favourites to share because it features quotes from TBI survivors about what they would like others to know about their life. In our experience it hits the nail on the head (all 5 times!) and is a very important read if you want to understand anything about life with a brain injury.

At the bottom of the Huffington Post article are links to other articles by Amy Zellmer regarding her experiences as an author with a brain injury. Grab a tea and settle in to read her very insightful thoughts.

 

One year later

To the men that attacked my husband,

You’ve been on my mind lately. Frankly you’ve been on my mind most of this year. Do you realize today marks a year since you attacked my husband while he was walking in Toronto? Doesn’t it seem odd that your actions almost ended my husband’s life and you haven’t even seen it?

I wonder about you. I can’t help it. When we’re in the city for appointments (don’t you know that all the brain injury specialists are in the same city that this happened) I watch the eyes of the men we meet. I wait to see if they recognize my husband, if anyone is seeing a ghost that they thought they murdered a year ago. I don’t know that I’ll ever stop being curious or watching for you. It just makes sense that we will meet; the police assigned to this case are kind and smart and the world isn’t as big as you might think it is.

My husband and his friends were out for his bachelor party. I know they told you. I know you knew I was waiting at home for the love of my life.And yet my husband and his friends barely talk now. Traumatic brain injuries have a way of breaking up friendships.  Our first year of marriage was spent in doctors offices and rehab clinics instead of vacations and adventures.

I wonder at your group dynamics now and if they parallel ours. Have you pushed each other away because you can’t stand seeing your friends as the monsters from that night? Or do you hold each other close, keeping tabs on each other, making sure the secret stays secret. Which of you will be the next with a boot to the head for saying the wrong thing? And that girl. Does she worry each time you all go out that you’ll be arrested? Or beaten. I wonder if she struggles with panic attacks each time a phone rings? I did. I was re-living the voicemails detailing your attack on my husband for months.

When we meet I hope you tell me you’ve counted the days. I hope that night changed each of your lives and convinced you to spend every day paying penance for the life you hurt. I hope the aftermath, living with that secret, has propelled you from the boys you were a year ago to men. I hope you’ve done something stunning with your life.

Of course I hope you approach the police and confess, I’m not going to lie and say that’s not a wish. But even on my most optimistic days I can’t see any of you being strong enough to step up and accept the consequences. Nor can I imagine any of you with enough compassion to want to put us at ease and offer us closure. (If you want to prove me wrong, by all means contact the police at the 52nd Division http://www.torontopolice.on.ca/d52/ )

At the very least, let this monumental, awful thing that rocked our world rock yours too. Don’t be so callous and immature to not realize the gravity of what happened that night. You stole the life we were planning on. Let that change you. Become better. Make it up to the world. Instead of letting your actions that night define you choose to make it the catalyst for a good life. I hope one day you can look back and say that that night you realized how powerful you were and you chose to invest your life helping others instead.  And I hope when we meet you can tell us that we’ve been on your mind too.

Until then,

Jasmine