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Learning to live again

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Learning to live again

Deborah Johnston

Learning to live again. My story.

I wouldn't have been able to write about my experiences with regards to my brain aneurysm before now, as it is now I feel my true emotions and senses are more normalised.

I'm not saying I'm back to the person I was, but I'm able to think about my passion for writing in a way I haven't been able to, as it's taken three years for my brain to even think about processing any information and storing it there.

I found out I had a brain aneurysm back in 2015 (oops, nearly wrote 1915, I say this because I thought it was 1915 when I woke from surgery, I still get this number blindness). Anyway, I got a letter from radiology asking me to ring my doctor, this I did and the doctor rang me back.

I explained the letter to her over the phone and she just blurted out: "You have quite a large Brain Aneurysm and it's going to have to be looked at by someone in a London hospital."

Needless to say I was in shock, round a friends house, I was just numb, what a way to hear about something so serious! Was I going to die, was it going to burst (my mother died of a brain heamorrage).

Telling my family after I had found out more about it was the hardest thing, it was going to be a risky operation and it was right on the communicating artery.

I was referred to Queen's Square National Hospital for Neurology and Neurosurgery in London. They were fantastic, asking me if I want coils and a clip put into head (meaning it will deal with it completely), or coils put through the groin (a risk that more coils may have to be added at a later date). I opted for the groin, it seemed so much easier to me.

I found out in the March and had the surgery on 11th September 2015. I was told it could burst at any moment and they wanted me in sooner but I had my son's wedding in the June and my Daughter's first born was due in August. I wanted to share these special moments in case I didn't make it through the operation, but every day was like living with a ticking time bomb in your head, I had to deal with these emotions.

The day before I was admitted to hospital I was horrified, there were people screaming in pain, two had brain bleeds and were very poorly. I cried telling my husband Bill I wanted to leave. For the first time ever my husband raised his voice to me telling me I could be in their position (pointing to the patients who were very poorly), if I left I could also be in that condition if it bursts! I listened and settled down for the night.

Deborah in hospital

Deborah in hospital

Believe it or not I was calm the next morning, Bill held my hand while I was wheeled down, he stayed until I was finally anaesthetised.

I woke up in recovery, the lights were very bright, I could hear someone calling my name asking me questions, full name, where was I and what date was it, I replied with 1915, I knew in my head I was right. They were concerned because I couldn't move my left leg, it turns out it was weak because I had laid still for so long and they didn't know about the herniated discs in my back. I knew nothing of this at the time because i was away with fairies so i couldn't tell them, they thought I had a stroke!

I found out later that Bill hadn't been told, he was panicking because I was the only one who the nurses hadn't had an update from.

I stayed in HDU for three days because I was unable to walk and the photophobia (bright lights), and still in the year 1915!

I was discharged a week later, the headaches were a killer, it felt like my head would explode, I was sick of them. I was moody, irritated by others, exhausted and to be honest I felt like I was a different person now. I couldn't watch television at first, or have the main lights on, my sight has been affected, I couldn't even remember things I had just talked about!

Three years on I still have short term memory loss, I cannot go out in the sun without really strong sunglasses and even get blindness with them on if the sun is low. I cannot work out change in a shop, so I need help for all these things, my anxiety is bad I was never anxious before. I have a headway card which tells people of my disabilities, I show this to shopkeepers if I'm having a bad day so I don't get embarrassed by telling them I need help.

I know I'm a different person now, the healing process has been long and I have been told these disabilities will stay with me for life, do people understand? No, they see you as perfectly well and laugh when I get words jumbled (I laugh along too now), but I do get frustrated inside.

I still get really bad headaches too and I like to be left alone to deal with these.

Am I pleased mine was found and treated? Yes I am, I am lucky to come through this, some haven't been so lucky, like my poor Mother.
 

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