Encephalitis

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    Processing Strong Emotions After Brain Injury

    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...

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    Connecting with Encephalitis Survivors

    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...

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    Three Chronic Woes #chronicallyill #ChronicIllness #overwhelmed #Neuroendocrinecancer #ME myalgic encephalitis #EhlersDanlosSyndrome

    How do you cope when it is ALL coming at you at once? I was once a very independent, successful, super type A, corporate America gal who was so capable. Three chronic illnesses later I am exhausted, always battling brain fog, and my past coping mechanisms no longer work. Very quickly my life has spiraled out of control & I am feeling in such utter chaos that I don’t know how to right the ship. #hopeless #needhelp

    1 reaction 13 comments
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    Apprehensive

    So today I went to my gastroenterologist and found out I need further evaluation to rule out conditions before settling on ibs and treating that with antispasmodics they said I definitely am a zebra with the complexity of issues autoimmune cardiac mental health and so forth And though I said it in jest it's actually covering up insecurities and paranoia that I'm a fraud and my illnesses are not valid despite true symptoms and extensive meducstins and hospitalizations and procedure ice come to doubt myself because of doctors initially saying fibro and myalgic encephalitis don't exist as a teenager when I just wanted to feel better regardless of it's was mind or body driven but with the schizoaffective this has be become a deep seated paranoia that my doctors are out to expose me as delusional for there own laughs reality testing tells me this isn't true but feelings hard to shake the tests are producing a lot of anxiety like are they giving me placebo is this all a test I know it's just my diseased mind conjuring up these thoughts but his do you other "mighty warriors" cope and quell the obsessive tape of uncertainty playing in your head #schizoaffective #POTS #ChronicFatigueSyndromeampME #granulomaanulare #Zebra just want be back on the Oregon coast so ill try to meditate on that to get to sleeo

    3 comments
    Living with myalgic encephalitis can be challenging. You don't have to do it alone. This is a safe space to talk to people who get it.
    Living with myalgic encephalitis can be challenging. You don't have to do it alone. This is a safe space to talk to people who get it.
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    Be Fearless

    What to know more about side effects after encephalitis. #Encephalitis

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    Has anyone experienced trauma from childhood chronic illness?

    I try searching for stuff about it online, but it’s usually like how trauma can cause chronic illness. So the experience feels isolating.

    I’ve been chronically ill since the age of 5, starting with PANDAS (often called BGE). Which is basically brain damage caused by strep throat that gives me ~lovely~ mental and neurological issues.

    And, of course, in true chronic illness fashion, I have since gained more diagnoses, including PTSD.

    And I feel like the actual chronic illnesses that have plagued basically my entire life + how they (and I) were treated because of it: medical neglect, medical abuse, bullying, loss of a normal childhood, etc, has led me to develop a unique type of trauma.

    #PANDAS #PANSPANDAS #PANS #bge #Encephalitis #OCD #Tourettes #PTSD #CPTSD

    6 comments
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    Autoimmune encephalitis

    Anyone else have this awful disease? I feel so alone