robyn's story

My name is Robyn, I was diagnosed with epilepsy at the age of 23. I am writing this for those who might be going through the same situation or have a family member going through a similar situation.

This is my Epilepsy journey

On the 26th of January 2019 it was an ordinary Saturday I was up and ready to get the day started heading to my sister for breakfast. As we were leaving the house I had my first seizure. Not knowing at the time that I was epileptic or that it was a seizure. Lucky I was standing opposite my father and as one half of my body went numb he thought I was pulling a funny face at him. But soon realized something was wrong when I collapsed in his arms thankfully. Him not knowing what was going on shouted for the gardener to help carry me to the car. (Let’s just day I was left with a lot of blue marks from the man handling) my father rushed me to hospital the said it was just an isolated incident and kept be for a few hours drew bloods and let me go the same day.

On the 13th of March I had my second seizure this is when my parents were both home I was just about to leave the house and drive to work. Lucky again I was close to a bed. It is just a split second where I feel things go numb but then I’m completely gone. Blacked out. It takes me a while to feel normal again a lot of my memory during that time is completely gone. My parents rushed me to hospital again because now they wanted answers. I mean I was minutes away from being behind the wheel of my car. I gave my ID all my details to the nurse and I did not remember giving any of that information. I was admitted to hospital that day. They did all the blood tests and checks and everything came back normal. I had a CT scan came back normal. Because I had no seizures I was discharged the Thursday afternoon. The physician however diagnosed me with epilepsy and I started getting treatment for that.

Even though I was on medication epilepsy affects everyone differently and medications are trail and error process. I felt like a lab rat. I was on anxiety medication and epilepsy medication.

On the 22nd of April I had another seizure which resulted in me having to change medication. I started the new meds and after 2-3 weeks I got an allergic reaction high fever swollen face rash all over my skin. It got to the point where I was rushed to the emergency room again (will never forget that injection in the ass) worst experience ever.

And then the lab rat was at it again having to start new medication with new side effects and making sure my body gets used to it and adapts to it.  Or better said controls the seizures.

I got new medication had to deal with all that anxiety again. And finally found one that worked for me. Better said 2 that work for me it’s a combination of meds. This definitely had some side affects to my colon causing heartburn and indigestion. But my body had to adjust.

I was unable to drive for 6 months, not able to have any caffeinated products ever again and no gym. Yes I was always a plus size female but I went to gym 3-4 times a week I was still studying so I would be with all the stay at home moms doing step classes and workout classes. This took a knock on me mentally watching my body go from a 14 to a 18 or 38 to a 42 it was tough having to buy new clothing.

After 6 months seizure free I was cleared to drive this was the best and the worst feeling in the world. On the one hand I was so excited to get my independence back, to be me again but then that anxiety and fear crept in as I got behind the wheel I had to take it slow and ease back into it again. I still felt to uneasy to workout as my hands was always shaking due to a side effect from my medication I got tremors. I only started working out January 2020. During the time I really got time to accept and love my body.

I went for an MRI scan which my medical aid didn’t cover, let’s just say 2019 I spent a shit load on medical bills and on an intern salary that was challenging. Spending R5000 on one test when I earned R6000 was tough, just for a one line email saying your test came back with nothing.

Let’s not talk about the home life I couldn’t make any funny sound then I would have someone running to my room. I couldn’t shower with the door closed as a 23 year old I felt like I had no privacy. It was so annoying.To this day the fear is still there every day it is something I am aware of because it was not anything that could be explained. There was no reason nothing I could do to stop it and I hate note being in control of my actions.

Let me back it up a bit so in 2019 I decided to work and study full time. I had an amazing internship lined up from 8-4pm everyday and then my honours degree classes from 5-9pm four times a week. During that time I made the decision to put my health first and stop my internship and just study full time. I must say today I regret that decision as I’m struggling to find a job in my field. I wish I did my degree part time and finished my internship. Work experience is more valuable at this stage. Nonetheless at the end of 2019 I had to start the job hunt again found a job as a data analyst at a fashion company but actually I’m a trainee planner doing size ratios, distributing stock to stores according to what store sells bigger sizes and who sells more smaller sizes. Printing the labels that go on the garments. Doing weekly sales reports by store by category. Doing weekly sales report on each garment of clothing. I’m happy I have a job as I know it’s tough to find one in our economy but I’m so worried I made the wrong decision in 2019 and now I will be stuck in retail because that’s the experience I am getting.