We fight to improve the lives
of everyone affected by epilepsy

Harry

Harry was diagnosed with epilepsy in 2018, when he was 17. “I have focal seizures where my arm and hand locks up and is unable to move. I'm still conscious but unable to speak or anything. This may progress into a tonic clonic seizure.”

Harry is studying computer science and also works at Sainsbury’s in Belfast.

“I'm currently working every day this week and most of next week and that's all I know so far. For the next few weeks, I'll be working during the morning when we're just open specifically for elderly, disabled and NHS staff for an hour between 8am and 9am. There's always something to do in Sainsbury's to keep me busy, especially in strange times like this. You've always got a customer enquiring about the empty toilet roll shelves. I work on checkouts and the workload can be tough. There is a constant stream of customers who are panic buying (which I try to discourage!)

My memory is always pretty dire due to my epilepsy, especially when the shop is packed out with customers asking me a question every minute. I do tend to forget where items are located in the shop. But it usually comes back to me when I walk about the shop for a bit (or I'll get someone else to find it for me). Working on checkouts, you'll always encounter crazy shoppers, and it has definitely increased in recent weeks as expected. Obviously, people ask when I’m getting the next delivery of toilet rolls. I haven't seen a pack of toilet rolls in nearly two weeks.

I do get stressed by the odd angry customer, complaining about something way out of my control. The thing that stresses me out most is shoppers who don't respect the social distancing advice we have plastered around the store. Some just ignore it and go about their normal day. This puts me on edge, out as I'm worried about contracting Covid-19.

I tend to not to worry, and any of my friends would say I'm incredibly laid back. But when it comes to coronavirus, I have worried a bit more, which I believe is totally normal for someone with epilepsy. I know that if I was to contract it, I would be prone to having more

seizures, as the same happens when I get the flu. But I don't think I'd isolate myself for 12 weeks just because of that.

Obviously, I do have to take all this into consideration when I'm working and know my limits when it comes to my epilepsy. I don't want to run myself into the ground and get so stressed out that I have a seizure and end up not being able to work. I do also believe that keeping busy is really important, as it tends to take my mind off things. Taking the necessary precautions that the government and NHS has advised, such as regular hand washing etc, has also helped to put my mind at ease. I'm lucky to not have had a seizure since November and I'd like to keep it that way.

I usually am fairly good at taking care of myself but I do need to understand my limits. It's very important to get a full night’s sleep, especially if you are on the front lines and have epilepsy. I do try to rest, but it's quite hard when Disney+ has just come out and there are so many films and TV shows I want to watch! In all seriousness, I do believe that the best thing to do is follow the government’s advice and take care of yourself.

Currently, I live at home with my mum and dad. We're all still working as we are in essential businesses; the company my Dad works for helps to fix the water sites in Northern Ireland and my Mum works in an opticians. We are taking the necessary steps and to prevent us from getting the coronavirus. I think it would be a big blow if one of us was to contract it, as we'd all have to isolate for 14 days. We've currently isolated ourselves from the rest of our family, which I think everyone should be doing. It would be especially tough if someone in my house was to catch it, as it would be difficult to obtain my medication. But the doctor gave me a few months’ supply the last time I got my prescription, so I think I'm pretty set up for the next few months. It's very important that everyone follows the government’s advice. We all need to try and stay positive and keep busy. I've forced myself to pick up my guitar again and learn some new songs. But in these times, if you do feel worried, there is always someone to talk to, whether it’s a family member, friends or even Epilepsy Action.

Support Epilepsy Action this Purple Day

Harry
Add your story

e-action newsletter

Stay up to date with the latest news on coronavirus, epilepsy news and events, and how you can get involved.

Subscribe to e-action newsletter feed