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Jen Starsmore

What I wish I could still say...

I've written here many times throughout the last 6 years but not so much recently because I'm fine and seizure free but actually today I realised there are still things I wish I could say and feel like people would be interested to hear rather than feeling like it's more like attention seeking because my diagnosis was 6 years ago and I should have said everything I wish I could say by now.

If we've not spoken about this before, let me 'quickly' fill you in with a bit of the past. I was diagnosed with Temporal Lobe Epilepsy when I was 17 years old. I was at the age where I knew what I wanted to do after I left school, I was ready to learn to drive and I was excited for what my future held. The first seizure that I can remember is one of the most awful memories I have. I was on stage at the local theatre in my town. At the time, I went to a Stage School and I was performing a song from Mary Poppins, I still get a shiver when I hear it. I can remember my heart absolutely racing which was totally normal because I was about to sing a solo in front of an awful lot of people. I suddenly got really hot and felt myself absolutely dripping wet with sweat. I remember being stood in the middle of the stage about to do my solo when suddenly everything just changed. I started hallucinating and didn't understand where I was or what I was doing, I was so incredibly frightened but unfortunately that was my first tiny glimpse of what Epilepsy could do to me. I know what you're thinking and yes, somehow I did manage to do the song and walk off stage. I have absolutely no idea how.

This seizure is the one that got the ball rolling really. Things went from bad to worse. My seizures turned into what I can only describe as the most awful things, ever. My seizures meant that I didn't fall to the floor and shake, instead mine consisted of pulling at my clothes, pulling my hair out, not knowing who I was, where I was, who anyone else was, I would hear loud noises and my vision would go blurry, I would lose control of my breathing and go through waves of screaming and panicking and probably the worst part for me was hallucinating. If, pre epilepsy, I had read that and someone had asked me if I thought that was epilepsy I would have said absolutely no way. How wrong I was!

The one part of my diagnosis that I remember word for word was my Epilepsy doctor calling me and saying "Great news, you have Epilepsy!" I can remember being speechless and not understanding why it was great news. What he actually meant was that it was great news that I finally had a diagnosis and I could start the long journey to dealing with my Epilepsy. The months that followed are all a bit of a blur where I had to make decisions such as staying at home when I went to university. I didn't go out as much with my friends anymore, especially as drinking too much could have become a trigger. I became very attached to people who knew how to look after me when I was poorly including my best friends and my family. It was rare for a very long time that I could go anywhere without them. In and amongst those difficult months were ambulance journeys, scans, injections, medication, doctors and nurses appointments, health and safety plans and a lot of explaining. The happiest moment of those months was when I sat in the nurses office for the first time and he told me that my head must be buzzing with questions and to just fire away. I remember blurting out "Can I still be a teacher?" and with no hesitation he said that yes, I could absolutely still be a teacher. An amazing moment in my life and one that I sometimes still remember as I sit in front of my class today. There were lots of 'worst moments' in those months too but thinking back to that room with the nurse for the first meeting, I asked a bit of a throw away question "Am I still going to be able to be someone's Mummy?". This time the answer wasn't so quick. It didn't take long for him to explain that the process can be a complicated and difficult one but not impossible. He also explained that, like everyone who tries to get pregnant, I don't know what I'm dealing with until I get there. Whenever I think about my future and wanting to become a Mummy, this does panic me and as I've got older I've had more detailed conversations with my nurse about it and it makes me want to scream and cry but I know as always, I'll be well supported.

It's strange to me now that years have passed since those early days. It's been a bumpy ride, a really bumpy ride but I've been fit free for a while now. I know how very lucky I am to be fit free and that this is something that some people with Epilepsy never get the chance to say.

As my diagnosis was so long ago, sometimes it feels strange to randomly bring it up in conversation with people. Some new people that I meet I choose not to tell if it doesn't feel appropriate but recently I've met people who I know will be my friends for life so they know but you always wonder if someone's perception of you will change, luckily for me, it didn't. It's easy to blurt everything out to those people because they've never heard it before so it won't be a "Oh here we go" moment for them. I actually KNOW that none of my family and friends would feel like that anyway, I'm so incredibly blessed with the people around me but I do feel like it would be me droning on...

So I'm here to write what I wish I could say.. What I wish I felt comfortable enough to sit down and say...

What I wish I could say is that I still have to think about it everyday, I still have to wake up and remember to take pills or get snuggled into bed only to remember that I need to go back downstairs to take my medication. It's annoying, it upsets me and it makes me so grumpy. I wish I could say that I sometimes still struggle with the anxiety of having a seizure in front of new people or a new place. Being seizure free for such a long time means that I don't have to run through a plan of action with every new person I meet but actually, sometimes I still want to do that, just to feel safe. I wish I could tell people how nervous I am to meet a new partner and have to explain my Epilepsy to them. My previous partner knew my Epilepsy inside out, even just by the tone of my voice. I want to tell people that I'm worried that no one will ever recognise that again and that no one will completely love me because of my Epilepsy. I wish I could still discuss how scared I am about my future and becoming a Mummy and explaining this to someone who would be future Daddy.

What I really wish I could say... Sometimes I still struggle and feel like the 17 year old girl who had her life flipped round, it still hurts and some days, it's still really really hard. What I actually say? I'm fine, I'm well and very lucky to have been seizure free for such a long time. Why do I say that? Because it's true! But that doesn't mean the other things aren't true.

What I wish I could say? Some days it's not okay but it's okay not to be okay xx

Jen Starsmore
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