Portrait: Sophia
When I was 25 years old, I suffered a cardiac arrest, as my heart went out of rhythm due to a complication called long QT syndrome. I had to have a pacemaker and an ICD implanted as my heart was in great danger of going into cardiac arrest again.
Where Sophia’s story starts
When I was 25 years old, I suffered a cardiac arrest, as my heart went out of rhythm due to a complication called long QT syndrome. I had to have a pacemaker and an ICD implanted as my heart was in great danger of going into cardiac arrest again. Luckily, I was with a family member, my aunt from Greece, as she came to London to visit me when I was an inpatient in the hospital.
Experiencing a second cardiac arrest
A year and one month later, I sustained another cardiac arrest. I wouldn’t be here today had it not been for my friend, also a person receiving treatment in hospital, who knocked on my bedroom door to check and see if I was okay. She told me I was blue and she alerted the staff to help me. This was in March 2020. Almost four years later, I discovered SameYou.
My main symptoms
Three of the most bothersome symptoms I have experienced following my hypoxic brain injury include:
- Memory loss/forgetfulness
- Extreme fatigue lasting 6-8 months each year
- Impulsiveness.
I was in a brain injury unit from June 2020 until February 2021, where I was then transferred to a brain injury care home. I lived in two care homes, an intensive one, and a second one where I was allowed more independence to go out at certain times of the day with rehabilitation assistants to go shopping, go for walks and explore new parks.
What brings me joy in life
I enjoy wildlife photography, and often go to parks around London to take photos of wildlife. I also enjoy going to the cinema and watching new films every now and then. I do a lot of this with my rehabilitation assistants, who work with me every day. They help me walk my two cocker spaniels and remind me to do certain things I forget to do. I also enjoy art and painting; I even bought an easel to paint on.
The people who stood by me when it really mattered
My biggest sources of support include my parents and my friends. In my recovery journey, my biggest source of success involves my newfound passion for art. Also, whilst I used to be extremely introverted and lacked confidence, I now am much more interested in talking to people and being able to see my friends. I now volunteer once a week at my local Oxfam charity shop and really enjoy my time spent there.
The things I struggle with the most
As for the lows, I still really struggle with my impulsive spending and even lost control of my finances. I now have a financial deputy and find this very difficult as I now have a weekly budgeted amount of money sent to me, and I find it very challenging not being able to buy every nice thing I see online or in a shop.
I also struggle when I have no choice but to spend many months of having so little energy that the majority of my days are spent watching Netflix on the sofa in my living room.
What’s missing in my recovery journey is being able to speak with other survivors of brain injury.
It would be nice to share experiences and stories. I think a weekly meet-up in a safe space to talk and give feedback to one another would be helpful.
'Recovery is a marathon, not a sprint’
My advice for survivors includes practicing the following on a daily basis:
- Patience (recovery is a marathon not a sprint)
- Gratitude
- A positive hobby that brings joy or an interest in learning about something
My advice for caregivers is to also practice patience and to have a person or people you can share your experiences with if it ever gets stressful.
A quote I use to help in my recovery is...
Don't let the fear of the time it will take to accomplish something stand in the way of your doing it.