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.

 

 

 

Trial and Error

Our biggest fear after Jason was discharged from rehab (we’ll detail our experiences in future posts I promise!) was: how will we walk the line between respecting his need for rest and trying to add in new responsibilities and tasks?

The three batteries of fatigue concept has helped us communicate about how Jason is feeling and how much rest he needs. That being said it has not been easy. We certainly have had days where we anticipated grocery shopping would use his A batteries only to find that the lights were flickering and the store was overrun with wild children and he zipped right through his A batteries to B and nearly exhausted them.

Talk about concerning. On those days it is SO easy to get discouraged that things aren’t getting better, that Jason can’t even grocery shop anymore, that we’ll never have our life back. Those thoughts come up pretty quickly when you need to send your husband to bed for three days. What we need to remember is that recovery isn’t easy and giving in to those thoughts is not going to make it easier.

We had some of these days while Jason was in rehab and our social worker told us to look at them as successes. We felt confident enough with his recovery to try something new AND we were now skilled enough to recognize the exhaustion before it became overwhelming AND flexible enough to change the plans for the next few days. It is kind of amazing (more amazing if you know my neurotic self) and I’m not sure our social worker knows how many hard days her words have gotten us through.

One of these situations happened after rehab and (discouraged again!) I spoke to a friend that is an occupational therapist and she assured me they like to see people that are willing to try new things. As long as we can recognize the need to change plans if it is too much it’s worth trying for the gains of new activities. So now we make some decisions to go into Jason’s B batteries. Sometimes it’s because we’re desperate for sharing laughter with friends, even if it means the next couple of days will be quiet around home. Sometimes it’s to see if Jason can handle a few hours of organization or computer work to judge his abilities to return to work. While we spent the first few months of this year terrified to let Jason get tired we now use it intermittently to help with recovery and it has been a really good decision for us, at this point in our year.

If you want to start exploring the concept of mindfully using B batteries please do so with some guidance from your doctor or health care team. Make sure you’re at the point in your recovery that it will work for you. Get ready to increase sleep and rest so that you can recover fully into A batteries. Set up back up plans for if things don’t go well (make dinner ahead, have a babysitter on call, arrange for someone to walk your dog). When you start exploring your battery limits with intention I really do think it can add life into your recovery.

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.

The danger of timelines

We’ve almost reached one year post TBI.

If you had asked me when I was sitting beside Jason in the hospital to imagine our life now: I would never have expected us to be doing as well as we are. Some would attribute that to my being a pessimist but I think that’s unfair. I had just read enough articles and studied enough anatomy to know that brain injuries are very scary, very bad things.

And then we went to our first follow up doctors appointment and our family doctor said we could get married 3 weeks post TBI as planned. And then Jason’s neurosurgeon said he was fine to go back to work 5 weeks post TBI. An osteopathic manual practitioner suggested that 85% of individuals are completely normal within 3 months of a traumatic brain injury. One article said anything that wasn’t “cured” 6 months post injury would never get better. Another doctor said our life one year after the injury would be our life forever.

Jason is a remarkable man and so when doctors gave us the statistic about returning to normal within 3 months we both assumed he would be one of those amazing recoveries. I couldn’t imagine our life being awful forever so we both expected a quick recovery and to be back in our routine within weeks of his return to work. It didn’t work out that way and I truly believe those false timelines that were thrown at us made our year (or at least my year) harder than it had to be.

When doctors made decisions about what Jason should be able to do based on their timeline I swallowed my complaints and tried to stop seeing symptoms. When 3 months and then 6 months passed us by and things were still bad I was heartbroken. My husband wasn’t better – this has to mean either he was defective or I was. He wasn’t getting better and I blamed each of us, and I dreaded the rest of our life.

I do believe that that was not the intention when those dates were thrown at us by health professionals. I’m sure they a) believed what they were saying to be the truth and b) thought it would give us hope.

But having lived through this year I feel like each of these milestones set us up for failure. The frustration at not having a normal recovery (how was Jason, a strong, young, intelligent man not in that 85%?), the fear of our future being miserable – those are BIG feelings to deal with. And they shouldn’t have been our burden. We should have been taking each day as it came and dealing with symptoms as they presented. This article could just as easily be called “The danger of listening to your doctor” because we took our doctors at their word and didn’t acknowledge it when things didn’t make sense to us. To be honest, after all the research I’ve done I have no friggin’ idea how these dates were thrown out at us. All the “new” science indicates that individuals with traumatic brain injuries can notice improvements YEARS post injury. The research about neuroplasticity and brain injury recovery periods is compelling and really indicates we shouldn’t be putting any timelines on ourselves.

In fact since dealing with doctors that specialize with brain injuries the only time line thrown out at us was that anyone with a TBI should be off work for 6 months minimum, and only returning when they are ready and on a gradual basis. This information is so far from where we started our story and yet it makes so much more sense. Having lived through our first year I can say I wish we’d never been given a date or timeline for recovery. So if you are suffering, please don’t look at the “big days” that have passed and see how you failed to accomplish what the medical community had planned for you. They’re just days, like any other, and you have a whole lifetime to get your brain back .