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'My symptoms were all invisible, so how could anybody understand what I was going through?'

A first hand account of living with a brain injury, by Linda Collins.

Linda Collins Recovering from a TBI

ON JULY 31st 2014 I fell off my bike, landing helmet first on the side of the street.

At the time I knew I didn’t feel quite right, but I didn’t have a scratch on me so I just thought to myself :”I’ll be grand.  I’ll get through work, get a good night’s sleep and I’ll be back to myself tomorrow.”

Later that day I found myself sitting in front of a doctor being diagnosed with a severe concussion. I would later discover I had suffered a mild traumatic brain injury (TBI), also known as post concussion syndrome (PCS).

What is a TBI?

Like anyone else in my shoes, I didn’t really know what a TBI was. Is it serious? How long will my recovery take? What can I do to get better? There were so many questions.

But unfortunately there are no black and white answers. Everyone’s brain is different.

Over time I identified my most severe symptoms; what makes them worse and eventually what helps to ease them. But it really is a waiting game at the beginning. Which is extremely difficult. So my first piece of advice is to be patient.

What are the symptoms of a TBI?

My most obvious symptom initially was the pain. I had a constant, pounding pain in my head. So I started to keep a headache diary to help identify if there were any triggers for making the pain better or worse throughout the day.

I noticed that I needed sleep, and lots of it. The more I slept the less severe the pain was. My brain needed time to recover.

I struggled to concentrate. From work, to socialising, to doing my food shop. My brain couldn’t cope, causing the pain in my head to amplify, leaving my brain exhausted.

I became very emotional. It wasn’t a normal day if I didn’t cry at least once, be it from the pain or the overwhelming feeling of trying to cope with something I didn’t fully understand. I became extremely anxious and struggled to leave the house. Everything in the ‘outside world’ seemed to make my symptoms worse – noise, light, concentrating, the list goes on.

An invisible illness

I had to stop working. I couldn’t socialise. I felt isolated, alone and clueless. My symptoms were all invisible, so how could anybody begin to understand the turmoil I was going through everyday?

How do I explain how I am feeling to people and expect them to believe me when I look absolutely fine, maybe just a bit tired?

I felt like I was falling to pieces, but I knew I needed to stay positive. I would learn to manage this illness. I did everything in my power to find what works for me and my brain.

5 ways I manage my TBI

  1. I make sure my brain is getting enough rest. In the beginning this meant sleeping for more than 70% of my day. But now this means getting 8 hours sleep every night and taking time throughout the day to just ‘switch off’. Be it with a walk, practicing mindfulness, or taking a nap.
  2. I stick to a routine and plan my days in advance. This helps my brain to relax as much as possible and be ready for whatever life or work throws at me that day.
  3. I exercise every day. I go to the gym, go for walks or runs, or practice yoga.
  4. I have a healthy and balanced diet. I eat four big meals every day, plus snacks to make sure my brain is always sufficiently fuelled.
  5. If I’m having a bad day, I talk to someone about it. It can be the most disheartening feeling in the world when something as simple as a change of plan can cause all of your symptoms to come rushing to the surface. But don’t bottle it up. Learning to manage your mental health is crucial when learning to manage your TBI.

This is just some of what I have learned throughout the last four years of my recovery.

Linda Collins documents her journey at patiencelivingwithabraininjury.com where she also shares more tips for recovering from a TBI.

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Linda Collins  / Recovering from a TBI

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