Shelly

Summer 2019 is a bit of a blur for me.

I thought I was going mad or even had dementia (I was 44, so unlikely). I would forget how to do things that I had always done. Once I went to fill up at the petrol station. But I didn’t know how to get the petrol cap off the car I had been driving for 8 years. I had to get back in my car and drive away. I tried again when I got home, and it was simple. I took the cap off without thinking about it.

I was a postwoman and would lose chunks of time when doing my round. Around this time, there were lots of arguments in my house. I kept telling my son and husband that they weren’t telling me things. They thought I just wasn’t listening and daydreaming when they were talking to me. I spent a lot of time just being confused.

It all came to a head one day when I fell whilst delivering the post. I have no idea what happened, but I ended up face down on the pavement bleeding from my mouth, nose, knees and the back of my hands. I still held the bundle of post to my chest.

I knew I had to tell someone what was going on. My GP sent me to A&E for some scans. The first my husband knew about it was when I phoned him from the hospital. I had been too scared to tell anyone until then. I was then told I had complex partial epilepsy and absences. My EEG’s have so far been inconclusive, but my neurologist is sure I am having temporal lobe seizures.

I was devastated. I had no idea what this all meant for me. I had my driving licence medically revoked. Being a postwoman in quite a rural location, driving was an essential part of my job. I was signed off sick and told I couldn’t return to work until I was seizure-free, with no lone-working for 12 months. Then I was medically retired in January 2020. I was heartbroken as I absolutely loved my job, even in the cold and rain.

This diagnosis has been life-changing. I’ve lost my confidence and independence. I was a very social person, but I rarely go anywhere now. This is slowly starting to get better. I got a bus pass but it took months until I felt confident enough to go anywhere, as I was scared of getting lost. I was just starting to go shopping on my own and catching the bus to meet friends when Covid arrived. My confidence took another hit and I barely left the house for 3 months.

As restrictions started to lift, I was lucky to get a new job in a shop. I hadn’t worked for 12 months and would be interacting with people who had no idea about my condition. I was worried they would think I was rude and ignoring them when I had an absence. But work have been very good and have made reasonable adjustments to my shifts. They are very patient with me when I ask the same question numerous times.

I’ve always watched the London Marathon and every year I said, ‘I would love to do that’. I must have applied for a charity place with Epilepsy Action but to be honest I don’t remember doing it! It was a bit of a shock and confusing to get the phone call offering me a place. I had to think about it for a few days and spoke to my husband about it. He assured me that, yes, I did apply!

When I was first sent home from hospital with a diagnosis and some tablets, I found the Epilepsy Action website. It was a great source of information about my type of epilepsy. I’ve directed friends and family there, and when I get my medication changed, I look that up too. I also find it really helpful reading other people’s experiences of epilepsy.

My medication is still not right but my absences are getting shorter and I’m learning to live with them. I still get upset when I forget I have done things or conversations. I feel like I am a burden to my family as I rely on them for an awful lot. I am a nightmare at times, especially when I insist they haven’t told me things and they know they have. But my husband Harry and my son Joshua have been a great support.

Training for the marathon has started to rebuild my confidence and independence. I have done all my runs on my own. As my runs have got longer, my husband has met me en route with water and to check I’m still okay. I am very excited and nervous about London. I am hoping to finish in under 6 hours, but I won’t be disappointed if it takes me longer. I just want to enjoy it.

Shelly
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