Natalie Mackenzie, director of BIS Services, has created a journal to help manage, understand and deal with the effects of fatigue as a result of brain injury. Here, she explains why – and how its impact is being positively felt by survivors
Those working in the field of neuro rehabilitation, I hope, will all share the understanding of the debilitating effects of fatigue post brain injury.
Fatigue exacerbates the other effects of brain injury and can hit at any time, often without warning, and have long lasting effects. A good night’s sleep simply isn’t enough and clients simply do not have enough energy to tackle any of the tasks they need to complete, let alone even contemplate the things they WANT to do, often moved to the bottom of the pile, seen as a luxury.
No matter the severity of the injury, fatigue after ABI is nothing like any of us will have experienced before. The closest I think I have come myself is that post-newborn sleep deprived madness, where little makes sense, and decisions really shouldn’t be made! For our clients, it is all encompassing and can come and sideswipe from nowhere. Even for the most educated and insightful. I’ve lost count of how many times it’s been termed the “descending fog” to me.
The complication of course in brain injury is the challenge of lack of insight and awareness, often leading to a ‘boom or bust’ approach, a push back against the therapy team who seem to constantly bring up this issue of tiredness (this being the client perspective, of course), and the apparent lack of motivation and initiation. All too often though, fatigue management is overlooked, or at times, seen as a reason to cease input to allow ‘rest’ without attempts at an actual fatigue management plan.
Over the past few years, I’ve provided more and more tailored individual fatigue management programs, for new and existing clients, and issues around engagement and motivation due to fatigue had been coming up frequently in staff supervisions. So, we increased internal training, for our rehabilitation assistants and simultaneously, I was being contacted directly from family members and online groups to provide training and education in a variety of formats.
Although I’d always been interested in fatigue in particular, I now had an itch to develop something for those who aren’t able to use our services directly, or those who may fall below the threshold for statutory support but who desperately need help with understanding and managing their fatigue.
When I came across a planner designer who is part of a women in business coaching group that I am part of, I reached out to her to discuss my idea of creating the Fatigue Management Journal. We clicked straight away, as she had a personal friend who had a TBI and she could see for herself the challenges he was facing. She told me what I needed to do, gave me complete free reign on format and design, then she went off and worked her magic in terms of making it into a beautifully designed planner and taught me how to self-publish. It took a lot of edits to get it just right!
The biggest issue I had was making it make sense to a wide audience, with varying severity of brain injury (from mTBI to severe) and cognitive challenges, those with fluctuating fatigue, and individuals who could self-manage and maintain, but also creating a tool that others can use with their support team. I’m pleased to say that since its publication I’ve had a number of case managers, OTs and psychologists use it in their work with their clients, with extremely positive outcomes, and neurologists recommending in outpatient settings. I just love it when I come across another professional who tells me their client has the book!
This journal is designed as a self-management tool (or with support from family or teams) to enable individuals to manage fatigue experience in a controlled and measured manner, allowing self-monitoring skills to be initiated, as well as self-identification of triggers and strategies that can reduce the impact on daily function.
The six-month journal is packed with strategies, reflections and trackers that is completed with the clients’ own words and insights. So many times clients will become frustrated that someone is telling them they are making improvements, but they can’t see them, or they simply feel that person is being kind, rather than honest. There is great benefit to self-completion, even with support, and the fatigue tracker at the back of the book can show clear data of improvements over time. It also helps with the understanding that recovery is never linear, but that trends are generally upwards, over a prolonged period.
This is not a six-month quick fix, it is the start of the fatigue management journey. We all know there isn’t a quick fix for anything in neuro-rehabilitation.
In the journal individuals can:
• Learn how to identify triggers and vulnerabilities
• Implement the strategies of planning, pacing and prioritising
• Understand the impact of different environments and activities
• Monitor fatigue daily with a scoring scale
• Observe patterns of thoughts and mood
• Understand their own optimal recharge methods to manage their cognitive battery
• Learn to celebrate success
• Adjust and predict schedules more effectively
• Have an increased understanding of their own needs and symptoms in order to achieve their goals
Every brain injury is different, every recovery is unique. The journal allows clients that individual journey on their own terms.
There are some strategies that I know work successfully across the board, when they are implemented with guidance and prompts, which is what I provide throughout.
Monitoring the battery
We discuss the analogy of a battery discharge post injury, in a similar manner to the Spoonie Theory or the Pomodoro Method, often used in Chronic Fatigue and host to millions of social media hashtags. I wanted to add a new method in terms of battery management, as this has worked really effectively with a lot of my clients, and whilst the other methods are fantastic for their followers, brain injury really does add some unique challenges and adjustments.
I’m sure you’ve often found yourself seeing the ‘low battery’ alert come up on your mobile phone. If you don’t plug it in then, you notice that the speed becomes quite sluggish, things take longer to load and systems become a bit glitchy. If you have a more modern phone, you may have a low battery feature that automatically kicks in when its needed. When this happens the background functions close down, and only the really important functions remain, on minimal function. Then you’re on ‘red’, and you know you don’t have long before the battery goes completely. You always think you have a bit longer to finish a message or a call. But you never do, it just shuts down. No matter how many times it has happened, you always think you can squeeze our more than you actually do.
This is what is happening with fatigue. Before they can get in front of it that’s it, clients are on shutdown and then completely flat.
The journal teaches individuals how to monitor and manage that battery, so that they are less likely to suddenly find themselves depleted entirely, they can predict when the low battery is coming, what depletes them quickly and how to recharge quicker. Metacognitive skills are sprinkled all over the book.
Journaling works to create conscious awareness around patterns, behaviours and thoughts. By being more aware of triggers and patterns of how we cope, we can make moves to adjust and plan with them, rather than against them. I’ve had many people contact me to simply say that once that reframed the idea of just wanting fatigue to go away, and they learnt to ‘manage’ it, as they would another symptom, that they really started to feel more in control. Acknowledging the permanence of some level of fatigue is a great step for many in their rehabilitation journey.
Educate to understand
There are a number of things to consider when embarking on understanding fatigue, and the first 50 or so pages of the book are all about fatigue education, teaching individuals the causes, examples of co-existing conditions that can impact, the effects of medication and environmental factors and more.
I suggest that they take at least four weeks in the beginning to log and learn what their triggers and vulnerabilities are, what the look like, and probably most importantly, what they FEEL like. Those of us experienced in working within the complexities understand, but here the key is to find a balance between educating and overwhelming. It’s not designed to be an encyclopaedia after all.
There are pages at the back of the journal to jot down ideas and thoughts as well to refer back to in daily review. These spaces are also useful for brain dumps at any time of day., as well as a serving as a memory aid.
Learning what doesn’t work
Being aware of unhelpful responses to situations, or feelings of fatigue takes practice, and we don’t want to dwell too much long term on the negatives. In order to learn what does work, we first need to explore what doesn’t
I encourage the readers to think of this stage as gaining an understanding as to what maintains the fatigue rather than what reduces it. The comment I hear most often is “I just power on through”. It doesn’t work.
Individuals are encouraged to consider these responses that might not be acting in their best interests. Are they becoming short tempered? Are they withdrawing, cancelling social events? Are people around you telling them that they are doing things that they don’t notice or cannot recognise in the moment? The journal allows this reflection and learning that can be noted, monitored, and most importantly referred back to when things may seem more challenging, due a number of factors.
Planning, Prioritising and Pacing form the basis of the planning. However here we take a long period to learn what this looks like and how to anticipate, which is really tricky. I encourage individuals to really pull back and start planning in time blocks, and sticking to them with timers and alerts, only increasing as fatigue improved. Education around chunking and other strategies is provided, as well as the benefits of much smaller short term attainable goals. We want to encourage task completion, not a sense of failure looking back at what hasn’t been achieved that day.
Prioritisation and family delegation is important in the process, and there are worksheets to enable the reader to take time with their unit to delegate tasks and responsibilities clearly, so that prioritisation can begin.
Planning how to manage the battery in advance is key here, and the period of learning triggers and challenges allows this part of the process to come in to its own. Here we look slightly further ahead to large tasks and can work backwards in a visual manner, which is much easier for our client group.
Individuals can learn for example, not to plan a dinner out with friends on a Friday evening after a day of attending a heavy medical appointment. They begin to gather information and increase understanding that rest and recharge after the appointment in order to turn up to that event with energy to enjoy and participate. Is needed Readers begin to learn that those types of appointments are cognitively demanding, especially if they are novel or if there is a significant amount of travel. Individuals are prompted to plan accordingly, keeping the Wednesday and Thursday light on activity with low level tasks, so their battery is as optimal as possible for Friday. This tapering, where you pull back where possible on tasks in order to be at your best for the big event, will have a positive impact on fatigue scoring and prompts to do this are included in the weekly plan.
It is also important to plan appropriate goals. Ones that are achievable rather than insurmountable. SMART goal planning is an effective means of doing this, and in many ways is a whole new journal in itself. However, an overview is provided to ensure individuals understand the benefits of such goal planning, and prompts and templates are provided.
Points
I am a big fan of this approach, and have used it with many clients, and her it is particularly useful in the early days when individuals are discovering the activities that use more cognitive energy. There is a page in the journal for tasks and assigned points. Points change as fatigue improves and people become more able to integrate the Ps into routines. It also helps understand the benefits of rest or recharge for winning back points.
Tracking
I love a graph. So, I provided space at the back of the journal to track your fatigue. This is a really powerful technique, as it is there clear in black and white how things are progressing over time. I can be easy to become stuck in a pattern of negative thought that nothing is changing. The only way you can see change sometimes is through tracking.
Each day the reader tracks their average daily fatigue score. Patterns begin to emerge and there are the daily and weekly reviews to refer back to, to see why there was a change, and what made that period more fatiguing or more energised.
Sleep hygiene and recharge education to enable the reader to learn about setting down good habits, as well as understanding that rest does not always mean lying in a dark room runs through the journal.
It’s so important that users can see what works for them, and that what works for one person might not for them, again the individual nature of the journal is paramount. I’ve included some mindful colouring each month as well, to encourage such practice. Some clients involved their children or spouses here, which is a wonderful collaboration, and a perfect reminder of their support network on those tougher days.
The journal provides six months’ worth of daily diaries, weekly reviews and weekly planners. It’s a big book but it means that there can be consistency, there’s less likelihood of it going missing under a pile and there is a good amount of data available to the user. Each week has a motivation quote and the reflective practice becomes one of the most important elements. A benefit of self-publishing too is that changes can be made, and new editions created based on the readers needs and feedback. I’m in the process of creating a version for children, which will be full of fun and engaging activities to allow the whole family to be involved!
It has been a privilege to provide the resource and hear about the impact it is having on individuals living with the challenges of brain injury fatigue, any progress to me, no matter how small is huge progress.
The journal is available to buy here: https://www.amazon.co.uk/Fatigue-Management-Journal-Strategies-understanding/dp/B09B3LS6Z6