Gees! What a ride!

Every brain injury is different, and not everyone will experience the same symptoms. Some are visible, but many are completely invisible to those around us.

These symptoms can change from day to day, hour to hour, and are often made much worse by fatigue, stress, overstimulation (which can be minor), illness, pain, or changes in routine. It all depends on how I wake up each morning. This varies so much and makes life extremely difficult to plan. This link helps to explain it better

https://youtu.be/GDio-hS-M54?si=Xw4YDyaqelgtqu9y

Physical Symptoms

• Constant fatigue – feeling exhausted with little or no energy, even after resting.
• Persistent nausea that can last all day.
• Dizziness or feeling unsteady.
• Neck, head and shoulder pain.
• Constant headaches or migraines, often waking up with them.
• My scalp and head are always tender to touch.
• Balance problems – it can feel like the floor suddenly gives way beneath me. Walking is difficult and I bang it to things often.
• Internal shaking or a constant sensation that my body is moving.
• Looking up for too long, raising my hands above my head, or turning too quickly can make me feel faint or cause me to lose my balance.
• Body pain that becomes significantly worse when I am tired or stressed.
• Difficulty regulating body temperature – I can feel extremely hot or extremely cold without explanation.
• Excessive sweating with minimal exercise, especially when anxious or nervous.

Vision

Vision problems are some of my most disabling symptoms.

I experience:

• Phantom movement, where stationary objects appear to move.
• Visual snow
• Blurred vision or blurred areas within my vision.
• Shadows and dark spots.
• Difficulty focusing.
• Eye pain, dryness and itching, particularly after driving.
• Driving can leave me with a throbbing or whooshing sensation in my head and a “hangover” feeling that can last for days.
• Driving at night is especially difficult.

Hearing

• Difficulty processing sounds, inc what direction it comes from or the distance away.
• I often “zone out” and don’t register people speaking. Especially with background noises
• Difficulty telling where sounds are coming from.
• Ringing or whooshing noises in my ears.

Memory and Thinking

These are often the hardest symptoms to explain because people cannot see them.

I experience:

• Significant short-term and long-term memory problems.
• Forgetting entire conversations.
• Forgetting appointments, information and tasks almost immediately.
• Difficulty remembering what time of day it is.
• Confusion.
• Cognitive slowing.
• Difficulty finding the right words.
• Slow or occasionally slurred speech.
• Losing my train of thought anytime during a conversation.

Because of this, I rely heavily on:

• Phone alarms.
• Calendars.
• Timers.
• Written notes.
• Pill containers.
• Reminder apps.

Without these supports, I would forget many everyday tasks.

Anxiety and Emotional Changes

Anxiety isn’t always linked to something happening around me.

It can appear suddenly and without warning.

Symptoms include:

• A racing heart.
• Feeling on edge all the time.
• Fear for no obvious reason.
• Feeling overwhelmed very easily.
• Extreme anxiety around appointments or changes to routine.
• Fear when my phone notifications go off because I don’t know what news is waiting.
• Unexplained irritation.
• Waves of sadness.
• A heavy feeling in my chest.
• Feeling emotional one moment and completely emotionless the next.

Social Challenges

One of the hardest parts of brain injury is how it affects everyday interactions.

Sometimes my brain simply freezes.

I can’t think of words or process conversations quickly enough.

It makes me feel embarrassed, unintelligent and anxious, even though I know it is my injury—not who I am.

Because of this I often avoid:

• Crowded places.
• Shopping.
• Social gatherings.
• Busy environments.

Sleep

Sleep is rarely refreshing.

I struggle with:

• Falling asleep.
• Staying asleep.
• Nightmares.
• Waking already exhausted.

Appetite and Smell

• Constant nausea often reduces my appetite.
• I have very little sense of smell.
• Sometimes I cannot detect smells at all or they are confused.

Living With Constant Uncertainty

Perhaps one of the hardest symptoms isn’t physical at all.

It is losing trust in myself.

I don’t always trust my memory.

I don’t always trust my thoughts.

I don’t always trust my judgement or my cognitive ability.

Living with that uncertainty is incredibly difficult.

I also carry a deep fear about what my future might look like.

What Helps Me

Over time, I’ve learned that certain things help reduce my symptoms:

• Quiet environments.
• Time alone to recover.
• Noise-cancelling headphones.
• Being at home.
• Spending time outside in nature.
• Dark rooms when symptoms flare.
• Keeping routines consistent.
• Using alarms, calendars, white boards, notes around the house, reminders and notes for almost everything.
• Organising medication in pill containers.
• Giving myself permission to rest without guilt or trying to.

Brain injury is invisible.

Many of us look “normal” on the outside while fighting a battle that nobody else can see.

If you recognise yourself or someone you love in these symptoms, know that you are not alone. Understanding is often the first step toward finding the support, strategies and hope needed to move forward.