How to Keep Going #EpilepsyMentalHealth
We can all agree that having a seizure disorder sucks. No one wants it. Even if you are seizure-free with meds or after a surgery, it’s still somewhere in the back of your mind. If you’re not seizure-free, even with meds and after a surgery, it’s a little closer to the front. And whether you’re on a good streak and then a seizure comes, or you are having seizures day after day, it can be hard to keep going, to get up off the floor (sometimes literally) and remember that you are bigger than your seizures. But, you are.
Anxiety and depression are really common mental health issues when you have epilepsy, and for good reason. Here are some tips that I have found help me keep going, day after day, even when a seizure comes. These tips have helped me get off the floor, and kept me here.
1. Remember that there is always something to live for. Maybe you have kids. They need you. Maybe you have a partner. They need you. Maybe you have a cat. Your cat needs you. Do you have friends? Even just one friend? That person needs you around. I’m not asking you to get out of bed or get showered or dressed. I’m asking you to just stick around for one more day. Day by day. There is always something to live for.
2. Keep a journal. Write down your feelings. Draw in it. However you best express yourself, a journal can help you get those feelings somewhere tangible. I don’t mean that you have to get a fancy, handmade leather-bound one - you can just use a sprial notebook - but having something to write in or draw in when you are feeling your big feelings is good.
3. Call someone. I have called my best friend while sobbing and stayed on the phone with her while she drove to my house. I was a hot mess, and she stayed with me and talked me off a ledge - made me some tea and listened while I ranted and raved about how unfair life was. And, life’s not fair - let’s just get that out there right now. If it was fair, there would not be epilepsy. But, having someone to call who will be there for you in your lowest moments can be a life saver.
4. Remember that science is not going backwards. I’m 43. I’ve had epilepsy for about 43 years. When I was first diagnosed, there were maybe three or four epilepsy meds. Now there are more than thirty. There was no such thing as SEEG monitoring when I was a baby; no laser ablation; no RNS. Now, not only are there so many more options, but more and more are coming. I’m holding out hope that one day, something will make me completely seizure-free - maybe a new med, a new way of mapping to get actual firm margins, a new surgical technique. It might be coming, so I’m staying hopeful.
I have so many other tips: get outside (exercise = less depression), always have rescue meds near (reduces anxiety when you know that you can help yourself), watch a funny movie, find a support group (I lead one every other Wednesday!), take deep breaths, just do something - anything - that you enjoy doing.
Stay with me, folks. I’m going to keep this blog going, so wait until you see what I write next week!
