I was on the bus the other day when the driver sped up to beat a light only to slam on the brakes. I went flying across the seat. Turns out I have a concussion and a back injury from it. I already have acquired brain injury from brain surgery thirty years ago. I feel horrible. #Concussion #Pain
It’s pretty hard at times to see others move on with their lives. It’s pretty hard at times to feel like you are losing touch with everyone else’s reality. It’s pretty hard to deal with limitations that others don’t have to continuously factor in. Finally, it’s pretty hard to feel as though you’re being left behind. I believe that it‘s not intentional, but saying that all of the above isn’t true – to any varying degree – would also be a mistake.
I’ve come to learn that life doesn’t stand still when encephalitis and brain injury crossed my path. It can sting for sure to see others move on, but if you keep shifting your focus back onto what’s really important, magic can occur in your world too.
How has chronic illness affected me?
I have rummaged a fair bit about all this over the past few years. Tears have flown time and time again and to be honest, they can still flow at times. However, I’ve sort of decided to process all that anger, sadness and frustration in a more positive way. I truly feared that the way I had been handling this aspect of my life could keep dragging my mental health down and this could no longer be an option. I’ve come too far in so many aspects of my recovery to let this be my own demise.
The question was how do I change my ways?
Well I believe that I am allowed to feel what I feel at any particular point in time…I think that sweeping emotions under the carpet wouldn’t be the way to go either. However, I believed that there was room for improvement when it came to seeing my emotions take over and lingering for a prolonged period of time. It came down to me realising that it’s not about what others may or may not have done as I have no control over their decisions. It’s about making conscious decisions to invest time and energy in what works for me and my own priorities in order to help me realise my short, medium and long term goals.
I’ve spent a fair amount of time figuring out what those goals might be over the past few years and I simply cannot afford letting my emotions cloud my judgment to such an extent anymore.
Strategies to help manage lingering emotions?
Writing and journaling are probably top of my list. They help me process my emotions in a more positive manner, help me get rid of the clutter and shift my focus back onto what really matters.
Time in nature is another one. Observing all the beauty that nature has to offer makes me realise that things aren’t so grim after all. It makes me feel more grounded, it slows the avalanche of thoughts and it helps me appreciate the simple things that are too often taken for granted.
Deep breathing…something so simple, so accessible and – BONUS ALERT – absolutely free of charge. Deep breathing has a way to calm those strong emotions. Once the intensity of those emotions is under control, it becomes easier to focus on what’s truly important in the great scheme of all things and to not stew so much on past events. Deep breathing activates the parasympathetic nervous system which in turn allows your frontal cortex to re-engage and view things more rationally.
Exercising is another strategy that I use consistently. The intensity or type of exercise does not really matter as it’s more about moving my body, oxygenating my blood and doing something that makes me feel good. It’s also about making time in my busy schedule for self-care and myself.
Read the full story: www.weirdwonderfulbrain.com/post/brain-injury-processing-str...
This topic came as a suggestion from a follower and brain injured friend. To be honest, when I read that suggestion, I was surprised that I hadn’t taken the time to write about it earlier as connecting with others has been such an important part of my journey.
As we know, brain injury can be very isolating and we can often feel misunderstood by others. For many, it is an invisible injury so grasping the extent of the cognitive and identity changes that have occurred isn’t that straightforward. Although the perception of others can play a role when thinking of connecting with others, I also think that we individually seek some understanding , some clarity about what the future might hold and a sense of normalcy, so this is an aspect of connection that we also need to bear in mind.
My personal journey with connecting with other survivors
In the early days of recovery, I was given so little information about my diagnosis, my recovery and its potential outcomes and I remember feeling lost and scared about it all. I wanted to connect with other people who had had encephalitis to get reassurance, but also to get a true picture of what life may look like going forward. I eventually hopped on social media and looked for existing support groups. To my delight, there were quite a few and I started following them all. By reading the posts and associated comments, I was getting a heads up for what things may be like, but I found that many of the groups that I was following weren’t necessarily solution focused. I knew that no two brain injuries were the same, but the pictures painted were often grim and left little place for hope at times. That being said, I did come across some fabulous individuals that I’m in touch with today.
After a while, I put some of the online groups on the back burner as they could be generating more anxiety than comfort if it makes sense. Dealing with my personal anxiety was overwhelming enough at times so I had to make this call to best support my mental health and overall recovery.
Attending face to face brain injury support groups wasn’t convenient for me either as I wasn’t allowed to drive, I lived in a rural area of New Zealand where buses weren’t accessible and most of my free time was taken up by medical appointments or resting. I sort of went MIA for a while and although I was feeling very isolated, my desire for connecting with other brain injured people had gone dormant too.
That desire for connection eventually came back and I started reaching out to different people recovering from brain injury once again. I wanted to build connection based on honesty and authenticity, but I also wanted those connections to spark some hope and to be solution focused. I wanted those connections to support recovery and for them to be conducive of helping me & others move forward. Around that same time, I had just started my blog so when writing a blog, I knew I had to find a way to be relatable yet install a sense of hope too.
It is a very fine line to walk between too little or too much honesty.
I eventually came across a few more individuals with lived experience of brain injury and who were seeking similar type of connection. I think this was a pivotal moment for me as it opened up my eyes to a whole world of opportunities. It reminded me that there are so many brain injury survivors out there also seeking understanding, direction and connection. From there, there was no going back, my train of thought being: “if it helps one person out there, it’s worth reaching out.”
And then, Covid hit and really took things to another level. All of a sudden, everyone could relate to this feeling of isolation and it really confirmed to me that the need for connection is essential in life…potentially even more so for people who have been and will carry on facing health challenges once Covid has been and gone.
Read the full story: www.weirdwonderfulbrain.com/post/connecting-with-brain-injur...
Knowing our limit after brain injury…well here is a million dollar question right? Although the threshold and some of the associated triggers are likely to vary for each individual, there are some common blocks we can build on when trying to answer this question. In this blog, I’ll try to explore some of the things we can do to identify and explore those limits.
It’s not a sprint it’s a marathon
I know the concept of OVER slowing down may be hard to grasp for many survivors, but you have to be patient when it comes to brain injury recovery. The brain injury has created many more detours for you to get from point A to point B so allowing yourself more time to complete a task or reach a goal can be really beneficial.
Breaking tasks or goals in smaller steps may also be very useful. Several reasons why this may be helpful:
More efficient and targeted use of your brain energy
It’s likely to be less overwhelming for the brain to process
Gives you lots of milestones to celebrate along the way
Can work wonders in keeping your motivation levels up
I used to be able to do it all and live life at 100mph, learning to slow down has been one of the hardest things to get my head around. I eventually grew to appreciate that slow and steady gets me places, but every now and again, I still need to remind myself of that.
Repetition is key
You may not be of the belief that repetition makes perfect, but it can sure lead to improvements. If you are trying to improve a skill following brain injury, let it be physical or cognitive, it can drain your precious brain energy really quickly at first and even lead to intense fatigue. It’s important to increase repetitive skills gradually. Thanks to neuroplasticity, you can form new pathways, but it also requires time and effort to do so.
I’d encourage you to prioritise and make a plan addressing the skills you would like to improve. If you have a rehab team, they can assist you and potentially draw a plan for you. If you don’t have the support of a rehab team, talk to your GP, he is likely to be able to help, or at least point you in the right direction. Another suggestion is to keep a record of what you are doing everyday and track a few specific skills that you are working on. It doesn’t have to be an exhaustive record, actually the simpler the better (e.g.: tracking minutes, number of reps, etc.). In addition to visually noticing improvements over a period of time, keeping a record has the added bonus of keeping you consistent, accountable and motivated.
Brain injury recovery isn’t linear. I used to be really disheartened when I’d have a set back. It felt as though all progress had been lost. Keeping a record in my notebook has allowed me to keep my focus on the overall trend. It helped with my motivation levels but also in keeping my mental health in check.
Identify your triggers
In time, you will be able to identify a range of situations that typically increase the intensity of your symptoms and/or that drain your brain battery at a much quicker pace. Identifying those situations ahead of time might allow you to better prepare and manage those situations.
Discovering what doesn’t work and then what works best for you in certain situations takes time. Learn from each attempt, check in with peers or specialists to get ideas and guidance about what could be worth trying, adjust consequently and give things another go.
If a given situation remains challenging, it might be that you need to gradually build resistance to it. Remember, it’s a marathon not a sprint.
Noisy settings were really challenging for me and would tend to deplete my brain battery in a matter of minutes. I could take days to recover from grabbing a meal with friends at a restaurant. Using ear plugs has been really beneficial in lessening the draining effect that noise has on my brain. Something so simple has been a real game changer for me.
Read the full story: www.weirdwonderfulbrain.com/post/knowing-your-limits-after-b...
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I prefer to use this platform to check-in with this vast community, as seen in the many hashtags I have added below.
On a personal level, I am currently dealing with childhood trauma that stirred after suffering Post Concussion Syndrome. I have sustained multiple concussions throughout my life. So, now that I have a Traumatic Brain Injury, I have to addess the layers of trauma and severe PTSD, which I have learned to live with as a survival response to my abusive parenting. But right now, I seek information about guilt.
I am having bouts of severe guilt that stems from the shame that plagued my young life. So, I would be pleased to read your short personal experience with overcoming deep debilitating guilt burst. I do ask that you not share links to articles, videos, podcast, interviews, and books. I really want to read your short personal strategies used to alleviate the bouts of guilt I am experiencing.
Thanks for reading!
I’m a very smart person. I have a nice job teaching at a college program for people with intellectual disabilities. However, I have problems processing sudden multi step directions and tasks, and I always have. Because of a mild brain injury I acquired at birth, I have slow processing speed. So, I’ve always needed to establish a fewer set of steps for important tasks, since I was little.
Hence, the decision by the powers that be to require everyone to go through multiple steps to access a website, email account or bank account is a real issue for me. Although I do not wish to have my identity stolen, I think a simple password of my choosing should be sufficient. One of the techniques that I try to use to cope with my learning impairment is to use the same password for everything. Requiring me to add a number, a character, or whatever else a particular program has decided to require, and then demanding that I check my phone for an additional security prompt, and then making me identify all the pictures with cars, etc, means that I struggle to access information that I need to do my job and connect with other people.
Therefore, I should be able to choose my own level of account security. If I don’t want to add a bunch of extra characters to my password to make a particular account more secure, the powers that be should allow me to make that choice.
The technocrats with increasing power in our society need to give consumers the autonomy to decide our own risk level. They need to recognize and consider the needs of people with different learning styles, intellectual disabilities and emotional disorders when they design their software. For some people, a simple password that we create ourselves is a critical accommodation for an impairment.