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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



How I explain what living with a brain injury feels like

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There are so many names for a brain injury; TBI, stroke, brain damage, brain tumour, concussion, PCS… and yet actually describing what it’s like to live with THE most important organ in your body not working the way it used to, is exceptionally difficult. As most of the people we are conversing with haven’t had the bad fortune to experience a brain injury themselves, it’s hard for them to put into context what we are trying to outline. So often I hear from other survivors who feel totally misunderstood by their family and friends who unintentionally continue to diminish what they are having to deal with. Unfortunately, as a society we have been doing this for a long time. Women take the mick out of men for the “Man Flu”, by assuming that they have coped with worse symptoms than the man is suffering with. Men blame a woman’s heightened emotions on her “time of the month”, insinuating that her response doesn’t need to be taken seriously because it’s only a temporary effect due to her hormones. Many of us have worked somewhere where there has been a member of the team who calls in sick more than the average, and although the person may be well liked, there’s still an underlying sense in the team that they are just being a bit lazy and a let down. However, as no one can actually physically feel what an individual feels in a moment of time all of these examples are where people are downplaying the peoples health condition without merit to do so. This is psychological invalidation, even when a person doesn’t recognise that they are being dismissive. Often people need to see or hear it from a third party to be able to consider that it’s not just one person being “overly dramatic”, that it does actually happen to other people too. That’s why I’m going to describe just a snap shot of what living with a brain injury is really like.

Thinking can be like walking through treacle.

If you’ve ever sat an exam and afterwards wondered how you answered any of it because now you’re so shattered you can’t remember even the simple answers, you’re on the right track to what most days can feel like for a brain injury survivor. Women who have had “baby brain” or “menopause brain fog” should be able to relate  to this. Men, the only other comparable example I can think of for you is trying to work with the worst hangover ever, the type where even putting in your password in your work computer feels like the trying to spell “cataclysmic” in Russian.  Whilst these examples are scenarios which will pass and clarity will return, for us clarity is but an occasional visitor. The most frustrating part is that we know the answer is in there and when we work really hard we can find it, but it’s exceptionally draining.

Having a memory which has more in common with Swiss cheese.

A persons memory is always changing as your brain holds on to the things that you use more often, and throws away the memories that you never look to anymore as we don’t have an infinite capacity for them. So we have all experienced a time when someone brings up a scenario from the past that is as clear as if it was just yesterday for them, but we can’t remember it all.  Take that feeling and that is what it feels like when you’re told you have told the same story 3 times in the last hour because you don’t remember that you’ve already told it today.

And yes everyone has done that thing where you walk into a room and ask yourself “what did I come here for?” because you’ve forgotten what you were doing, but believe me that it just the tip of the iceberg of what dealing with a damaged memory is like. In Clearly lost, the snag of brain injury I described what it was like to get lost in my own town. I just couldn’t remember how to navigate between different locations and it took me ages to achieve what I’d gone into town for. It was like when you visit somewhere for the first time but the map isn’t clear and the GPS on your phone isn’t working. You know you must be sort of in the right area but can’t figure out where you’re going wrong.

Planning any social activity means blocking out the whole week.

Fatigue is debilitating and it isn’t just about whether you had a good nights sleep or not. Because an injured brain is having to work so much harder to do even the simple things, social events drain us much faster than other people. Trying to follow the conversation/s, dealing with a different location, bright lights, background noise, it all adds up and we struggle to filter it out the way other people do. I recounted a disastrous experience I had at a restaurant because of these things in Light and noise sensitivity after brain injury and how that put me in an awful mood. I then was good for nothing for days later because I was so exhausted all the time. Believe me, I was ashamed at my behaviour at the time, but there wasn’t anything I could do about it. So if we seem moody and antisocial, please don’t take it personally.

There are some things that can be extremely difficult to do due to extreme weakness.

Unless you’re ambidextrous, most of us have a dominant side, with the other not being as strong or coordinated. But when I say I have weakness in my left side following my brain injury I’m talking about something much more severe than that. A few times I have tried to indicate what this can translate to and affect my everyday life, but I recommend Held back by weakness from brain injury  where I explains how I couldn’t even open my front door! Imagine that, being a prisoner in your own home just because the nerve damage it you stops your muscles from being able to transfer enough force. Or how about not being able to ride a bike because one leg is not able to peddle and you become unbalanced. That’s what we mean by weakness, not unfit coach potato weakness.

Emotions can be sudden and more intense than we are able to handle.

In Unstable emotional lability after brain injury can be tense I outlined how our responses to situations can be disproportionate, and nearly 7 years after my accident I still have these moments. These days I am able to recognise that the situation doesn’t warrant the scale of emotions that I’m experiencing, but it’s still a challenge to calm myself down. Recently I was totally livid about something so miniscule that I knew I had to go walk it off. But it was 1 o’clock in the morning, so rather than wonder off in the dark, I did hundreds on circles in my tiny garden with the security light behaving like my spot light. (Sorry to my neighbours if I woke you up and confused you.) It still took about an hour for the episode to pass. All the while I was telling my concerned partner how I understood I was being ridiculous (I was so embarrassed about how stupid the thing was that I wouldn’t even admit to him what had upset me so much) and yet I was still fuming.


I could go on all day seeing as a brain injury can impact EVERYTHING, but I thought I should keep this succinct enough for non brain injury survivors to be able to take it in.  The important point is that although we might not always be able to describe what we are going through, we need your compassion, not judgement. Believe me, we WANT to feel better, think faster, be able to control our emotions, but sometimes we just can’t. We know that can be difficult for others to deal with and we appreciate your support and understanding. Bear with us, our good moments do still visit and it’s worth the wait.

How do you describe what living with a brain injury is like?


21 replies on “How I explain what living with a brain injury feels like”

To me, it’s like the old VHS machine frozen, and then advancing frame by frame as I try to work through something.

I can be going normal speed, processing well, and then nerves become over-stimulated (too much noise, too much in my visual field, movement), the frames of my life video freeze for a moment, and then move s l o w l y forward until I can recover.

I will come home, and go to bed immediately and sleep for 14 to 16 hours when that happens…

That weakness for me includes at times a perpetual feeling that I am seasick in a rowboat and can’t get off. It means I have pushed my luck for sure. The near normal days are a treat but that twinge of loss still rises up and at times and I know I ignore all the warning signs, push through really setting myself back.

Oh Elaine, that sounds really horrible, but good way of describing it. I think most people can appreciate that.

I live my brain injury like this. When I was born, there was an incredibly talented woman living in my brain. She stored the things I learned, my memories, emotions, things I loved to do, how to do things and the names of people, places and things. She knew where everything was! We were a great team! Then after my head injury she quit. She was replaced with a young girl with no work ethic. She generally comes to work in my brain everyday, but doesn’t always want to work. So often she’s not willing to look for things when I need them. That’s an unfair description. Sometimes she’ll look, but at her own pace and sometimes she just finds something close to what I need and decides that it’s good enough for now. Everything I need is stored in my brain. It’s all there carefully stored away. That girl just doesn’t have it in her to find it and give out to me when I need it.

My body was so broken, that at the time of my brain injury, I barely felt the hurt in my brain. It is a constant pain, but when you are in a car accident and the rest of your body is hurt, your brain kind of takes a back seat to all the pain you are going through. Now, 23 years later, my brain rarely hurts, then I have to figure out the reason it is hurting, not fun. But, since this pandemic started, it seems the right side of my body is mirroring the pain my left side went through 23 years ago. So, I still hurt.

I’m 22 years out from my first tbi and 7 from my second. The symptoms change over the years! It’s so frustrating! Finally get used to dealing with one set of problems and then there’s a brand new set! We all have GRIT! It takes grit to get through this!

I’ve been cross-trained for 43 years and only remembered this year. I was 4. My family confirmed it after watching me suffer for years. I’m so grateful to be backed by the right story. Thank you for this, I wish I could share it on my page!!

The best description I can come up with would be, my “cursor” is often missing from my mental computer screen.

The icons are there, you just have no way to open them.

My short term memory bank is written on a classroom chalkboard and that damn janitor erases and cleans it
often and thoroughly. I still can’t figure out who gave him a pass key…

On my “ normal” days I’m like everyone else. On other days:
I feel like I just got off a rollercoaster
I feel like I’m going on 2 hours sleep
I feel confused and slow
I feel rude because I’m quiet and not talking because of above feelings but I look normal so no one knows
Sounds like everyone is yelling when they’re talking in normal tone
I’m trying to understand every conversation going on around me
I wish I could disappear because I feel out of place

I hope your friends and family understand that you can’t help how you are when you have these episodes.

A year ago, I hit my head into the pavement pretty hard with a helmet on. After a little bit of surgery on my fractured skull, I appeared to look fine but it’s what happened behind the scenes that only those close to me will understand. CAT scans are standard but after my physiatrist requested an MRI, they discovered diffuse axon injury.
I’m hope that the “hardware” is well on the way to being healed but the memory, mental fatigue and anxiety seem like they are not getting better. Brain injury recovery requires a LOT of patience!

Patience is definitely important. The cognitive issues do seem be the ones that many find difficult to deal with.

I am eight years into my brain injury, and feel like I have walked in a messy room for something but don’t know what I need when I get there. So I wind up cleaning up stuff hoping that I will know what I came into that room for. It is still confusing and makes me feel truly not alone on this journey. Thank you for being here.

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