No sleepy, no talky

I’ve posted some professional opinions on why sleep is so important post TBI and lots of ideas for how to make sleep work for you. Today I wanted to write a bit about how a lack of sleep presents itself in our life. Jason often tells people that fatigue is the first domino in his symptoms. Once fatigue starts to set in all his other symptoms tumble out, a year into this life I’m starting to be able to pick out the order of symptoms he commonly has and the warning signs to put an end to our activities.

If Jason runs himself to exhaust his A batteries in a day we can usually notice some symptoms. The first thing to go is usually his words. He’ll start interchanging words, missing words completely (in his case often nouns), or just drift off in the middle of sentences. In general he doesn’t notice these things which makes communication frustrating at times. More than once I’ve begged for nouns to be thrown into the conversation because I’m completely lost. At this stage there are also usually some concentration limitations, instead of verbal cues for things that need to be done we absolutely need to write down Jason’s list.

When Jason gets to his B batteries and uses them up concentration goes out the window. Jason might start out trying to get a glass of milk and end up cutting the lawn. Based on Clark Elliott’s book we make the comparison that Jason’s brain is like a computer and when he gets to this stage of fatigue it’s like new computer programs are opening up and he can’t close the window/program until he’s completed the task. So while he may want a glass of milk, if he looks out the window and sees the lawn needs to be cut that thought may take over and between fatigue and the learned fear of forgetting to do something he wants, cutting the lawn becomes priority #1. Weirdly, around the transition from B to C batteries Jason loses some ability to initiate tasks. It’s a thin line between being so tired that he switches tasks too easily and so tired that he can’t switch to a new task. This often happened at the end of the work day, knowing that he had to get to his car, drive home and be awake until dinner, he would often become stuck at his desk. I can not explain how these two things can both be signs of fatigue but they are and it seems like when Jason speaks to others with concussions or traumatic brain injuries they know EXACTLY what he means.

Once C batteries are being used and depleted it’s a bad situation. In another weird dichotomy Jason usually flips from anger (which was never an issue in his life pre TBI) to anxiety pretty quickly. The anger was really prevalent during the first 5 months when we weren’t receiving any care and he was working 50-60 hours a week in a management position. I’m sure there were a lot of other factors contributing to the anger such as denial of symptoms and confusion due to the lack of information we had. The anger now usually comes out at our cupboard that has cookie trays (does anyone know how to store those without them falling out if you need one?). Anxiety is more common at this point in our life and we do everything we can to help Jason find a way to rest before a panic attack becomes inevitable.

While these are purely our experiences we’ve heard from many others with traumatic brain injuries that can track their progression of symptoms and fatigue in a similar fashion. Almost 100% of the time everyone agrees that symptoms get worse with fatigue and that tracking early symptoms and planning a rest period can prevent full break downs.

Sleep deficits

This infographic was gaining a lot of traction in the TBI support groups I’m a part of this week:

Sleep deficit

 

Created by Science.Mic this infographic focuses on the effects of lack of sleep on the brain. Most of the symptoms discussed are already issues for those with brain injuries – anger, lost memories, risky decisions, head in the clouds are some of the most discussed among TBI survivors. They struggle with these things on a daily basis so one could expect that they feel these symptoms all the more with a lack of sleep.

Sacrifices for sleep

Yesterday I wrote about the gains we’ve experienced by using Jason’s B batteries intentionally. Today I’ll talk about all the things we do to make recovery possible, no matter which batteries he is using.

Sleep became key in Jason’s first year of recovery – a fact that we didn’t fully understand until the OT we hired to work with us privately had us keep activity journals and made note of how many hours he seemed to sleep for us to have a good day. Early in our time with her she asked us to have Jason get 10 hours of sleep a night, plus an hour nap, plus an hour wind down time before bed.

Seems reasonable.
Until you do that math and realize that’s 12 HOURS in bed per day!

12 hours.

Do you know how much you can do in 12 hours?!?

Do you know how much my husband does in 12 hours? This was a man that slept maybe 6-7 hours a night if I made him. We were going to lose at least 5 hours of working time in Jason’s life per day. You know how people are usually saying they could get their to do list done if they had an extra hour or two in a day? WE WENT THE OTHER WAY. TIMES FIVE.

I say this not for sympathy, but so that if you are in this position, trying to decide if you can make your sleep requirement work for you, you know that we get it. We have been there and we hated it and that’s okay. The truth is you can’t afford not to meet your sleep requirement.

Here are some of the things Jason gave up for sleep:

  • serving on two volunteer community groups
  • website design for himself and family and volunteer groups
  • nights with the guys
  • late night television
  • going into work 5 days a week (an hour commute each way plus a full day in the office meant he was never home)
  • early morning workouts
  • dinners with friends that start after 6pm

Obviously I did not need to adapt Jason’s new sleep routine but for us it was important to have something normal in our relationship. So we decided to go to bed together and then I just wake up early and have the house to myself for a few hours in the morning. There were still changes

  • I couldn’t work late if I wanted dinner with my husband
  • I lost my workout buddy (Jason)
  • I had to take on more around the house because I had more hours in the day

If you’re faced with this decision I really encourage you to whine about it, and rant about it, and then make the changes and get your sleep. Even looking at our sacrifices listed out, it was still the smartest decision we made this year.

 

 

 

Spoons and fatigue

The spoon theory link was sent to me by a Facebook friend around month 8 of life post TBI. It is actually about a woman trying to explain her life with Lupus to a friend but I think it fits in nicely with this series on fatigue.
She explains it far better than I could so head over to her blog and learn about the spoon theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

The broken phone lines in your brain

Sticking with our theme of analogies regarding fatigue here’s one we learned when we needed to explain why thinking can be so fatiguing. This is not to say it’s the only reason, but it does allow you to create a relatable image for friends and family.

Imagine you are making a call from Toronto to Denver. The phone companies have built towers and lines that make that call easy, straightforward and quick. Now imagine one of their towers breaks. Your call ends up needing to be sent through towers in Texas and Florida to be sent back up to Denver. That would take longer, and use up far more energy.

Neurons in the brain function similarly. You may have been able to listen to instructions and write them down at the same time in the past. Now some of the neurons that are needed for those actions are damaged and your brain compensates by using other pathways and neurons. It may take longer and use up more energy but eventually you will have some variation of the instructions written down.

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 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.

 

What happens if you don’t rest?

I’ve already mentioned the newer protocol for after a brain injury – complete rest, no stimulation (visual or auditory). This sounds painful and we were really fortunate that Jason managed to sleep for most of his first 3 weeks out of the hospital. The no stimulation piece is really hard to enforce when people are awake and bored and sick of lying in a dark room alone.  Very early on in his recovery we got to see how essential rest was to Jason’s recovery.

On his first full day home July 7 – Jason got up to go to the washroom and then I had him sign some paperwork for short term disability. Without exaggerating this was maybe 7 minutes out of bed. Within a half hour he was throwing up which is a huge red flag for brain injuries. Fortunately my sister in law was with me and we were able to wrangle Jason into the car and get to the hospital. We were informed that that 7 minutes out of bed with having to walk, and read some papers and sign some papers – was enough to over stimulate his poor healing brain which caused the vomiting. 7 minutes and what any of us would consider low stimulation. Post brain injury you have to completely re set your expectations.

A few days into his seclusion Jason became unable to tolerate light in the house when he walked from his bedroom to the bathroom. This meant all windows and doors had to be closed and covered so that he didn’t experience sharp, shooting pain from the light. I refer to this time affectionately as “when I lived with a mole person” or “the time I was bruised all over from running into things”. This was not a sign of him getting worse – intolerance to light and sound seem to be quite common symptoms post brain injury and I think that’s why they have the recovery protocol that they recommend now.

To give you a long term point of view Jason was sent back to work 5 weeks after his brain injury and maintained 5 days of work a week from August 2014-March 2015. Once we got in with the rehab team at Toronto Rehab they speculated that some of his symptoms might not be as severe had he taken the recommended 6 months off to recover.