Living life... with a brain injury

Disability3

In this guest blog, Liz talks about how through blogging she has been able to share her views and help others to relate to the trials and tribulations that are linked to living life following a brain injury. You can read Liz's blog here and follow her on twitter @brokenbrainliz

   
I tend to blog about life.  But... How do you write about life?  Where do you start?  Does life start when you are born, or when you actually start living?   Since coming out of hospital in December 2011, (even though I am writing this IN hospital), I have actually started to live. I have started living life... living life with a Brain Injury. Part of living life has been to ‘get back out there’ – relationships don’t always last, therefore I have started to use online dating as a way to get back into the ‘real world’.
Fish3
                        As they say “There are plenty of fish in the sea” It’s just a shame that there are not more dating websites where you can write what you actually want to say. They all start the same:
 Name: Liz Molly Oldershaw Age: 25 Gender: Female Location: South Brent, Devon Intent: Wants a boyfriend Profession: Volunteer Height: 5’2 (157cm)                                  Education: Bachelors Degree (Psychology)                                  Personality: Princess                                  Star Sign: Sagittarius                                  Eye colour: Blue                                  Hair colour: Brunette But they tend to leave out some important components; the characteristics that people really need to know about you before they really know you, the features that are not visible to the human eye: Medical History: Anti NMDA-r Encephalitis – diagnosed in June 2011 – Hospitalised until December 2011 – ITU 14 weeks  - 3 months rehabilitation– Relapse June 2013 – In recovery…(ish)… Treatments/procedures: Plasma exchange, IVIG, lumbar puncture, Hickman line, tracheotomy, MRI, CT Scans, EEGs, prodding, poking, drugs, drugs, drugs…You can read more on my 'Drugs' blog here Medication: steroids, immuno-suppressants (Mycophenolate, Azathioprine…try saying them outloud…), anti-depressants, melatonin, vitamins, drugs to make the side effects of the other drugs bearable... Affects of the illness: fatigue, memory loss, lack of inhibition, word finding difficulties, steroid fatness (‘moon face’) and acne, along with all the other side effects from all the drugs, scars, lack of empathy for others, reduced self-confidence, depression, seizures, insomnia, flashbacks, constant hospital appointments, complications in physical, mental and emotional health… 
      Maybe I should have this as my profile picture instead?          And that is why I started blogging. I wanted people to know why I am who I am. It is not just the physical aspects that I feel I need to explain; it is the behavioural changes I can see in myself, my constant need for naps and the encouragement needed to do everyday things. When you meet me it may not be obvious that I am recovering from a brain injury, but through blogging I have been able to explore what living with a brain injury means to me. Anti-NMDA-r Encephalitis is just one of many ‘invisible illnesses’.
Tree1
On the outside I may look like my Plenty of Fish profile suggests: a young, short, brunette girl from Devon that enjoys volunteering; but, it is only through blogging that I have been able to come to terms with living with a disability that people cannot ‘see’. Having to live with a hidden disability can be difficult.
LookSick1
For me, getting people to recognise what it is like to live with a brain injury is extremely important. And this lead to the birth of my ‘Living with a Brain Injury’ blog. Through blogging I have been able to share my views with others that are going through something similar and enable others to relate to the trails and tribulations that are linked to living life following a brain injury.
That moment when you meet someone and you both actually UNDERSTAND.  Imagine this but through blogging.  That is what I love about it. I am able to be in contact with other people that are going through something similar and moan and complain to my hearts content. Another reason that I decided to start my blog was to make sure that I was able to tell my story, my way. Take a look at this short clip where my sister and I were on BBC Breakfast. As you can see, the lack of understanding about what living with a brain injury is like, lead to the presenters asking all the wrong questions which left me feeling upset and deflated. “If you can’t remember your family, how does that affect the relationships you have with the people you love?” Really?? You’re asking someone with a brain injury that already has memory problems that question on LIVE TV?? I am so thankful that I have had many opportunities to raise awareness in the media about Encephalitis and the effects of brain injuries, but it has been a constant frustration not getting across exactly what I wanted and having my words changed and distorted to fit the story that they were trying to make. "Woman who lost all her memories following deadly brain swelling which left her unconscious for 14 weeks is re-learning her life with photographs" "Driven insane by your own immune system: One woman's terrifying story reveals how rogue particles in your brain may trigger mental illness" You can read more on my 'Media Mania' blog here Being able to talk about what it is like to live with a brain injury through my blog has been great for my own personal journey. I have been able to discover other charities that are linked to brain injuries, read other blogs about people with brain injuries and it has helped me to vent my frustrations, allowing me to come to terms with my new life. It is through The Encephalitis Society that I have really been able to grow. I have been able to realise that life is worth living.                                           My happy life is here to stay. 
HappyLife
They have given me so much support throughout my recovery, from allowing me to become a Regional Representative, where I have been able to learn more about Encephalitis and take part in the Family Weekend and then even spend a week up in their offices doing work experience (you can read more on my blog), to being able to call them up when I am feeling a bit rubbish to get help and advice. You can call The Encephalitis Society support line on 01653 699599. And it is through blogging that I have been able to come to terms with what living life with a brain injury is really all about. This year Liz is taking part in her own personal challenge which she has called "£2014 in 2014".   She will be taking part in as many different adventures as possible for the Eden Dora Trust.   The Eden Dora Trust was set up to provide support to children and their families/carers affected by encephalitis and acquired brain injury, you can find out more on their website here.  If you would like to support Liz in her challenge you can visit her just giving page. You can read more of Liz’s story and how encephalitis has changed her life in this news article: “Liz forgot everything, now she's learning to live again"
Share page
Print page
Follow us