I wanted to talk about something that those of us with epilepsy all deal with but maybe don’t talk about as often as we should: what to do after you have a seizure.
Like always, I’m never the first person to write about or comment on this situation. In fact, most non-profit sites emphasize the things we need to do in order to recuperate after a seizure. These lists of things like diet and exercise can be helpful, but they don’t always talk about the emotional side of having a seizure.
Addressing the emotional aspect of having a seizure is just as important as addressing the medical aspects of having a seizure. There’s always that moment when you do all of the preventative care to stop seizures and then you seize anyway. It’s frustrating. It’s confusing, and while we have a lot of literature about post-seizure first-aid, we don’t have a lot of discussions about how to care for your emotional self after a seizure.
This topic has become somewhat relevant to me in recent months, and in response to my increased seizure activity, I have been developing a step-by-step process of what to do with my feelings after I seize.
To celebrate New Year’s and the goals many of us will make in the next few days, I wanted to share my process of what I (try to) do with you.
1. Assess the Damage
“Damage” could mean many, many things. It could mean that you hurt yourself from having the seizure and need to address those physical concerns. It might just mean that you’re incredibly tired and need to sit down immediately or else you’ll fall over (see step 4 for more details). Whatever that means for you, take a moment and think through everything: do I have all of my limbs? Is anything broken? If all is good, then you can move on to the next step. If not, seek appropriate medical care.
2. Ask the Important Questions
This is one that’s familiar to many and many would consider as the first step rather than the second. Ask yourself who you are, where you are, what you were doing, what do you need to do and what day it is. Depending on the severity of your seizure activity, you may need to ask for help from someone you live with and/or someone you trust. If you genuinely cannot answer most or all of these questions, obviously seek out the appropriate help relevant to your situation.
3. Consider Your Stressors
Now that you’re done with assessing the physical situation, now comes the hard part: self-care.
After making sure that you’re safe and all things are accounted for, now is the time to think about why you seized today. Have you been taking care of yourself? (I’m not exactly a guru when it comes to this department, but it’s always worth considering) Have you been sleeping? Have you eaten today? Are you stressed for any particular reason?
It’s important to say that where this aspect of the list is concerned, I am a massive hypocrite. I am one of the biggest offenders of creating my own stressors. Because I’m a hypocrite, I think it’s important to say that it’s important to be accountable and remind yourself that there are some factors of having a seizure that you do have control over. You can’t change the fact that you seize, but you can make your life a little bit easier by addressing some of those concerns.
4. Sit or Lay down and Destimulate
I’m someone who can be exhausted before, during, and after a seizure. My seizures take a lot of effort and energy to recuperate from, and my recommended hours of sleep is ten to twelve hours per night (which, as you know, doesn’t really happen).
You don’t have to sleep per se, but just lay down and turn off all of the lights. Close your eyes and breathe. Listen to music or YouTube videos if that helps. The point of this is that you’re resetting yourself and just taking a minute to destimulate and recharge. If you don’t take the time to reset after seizing, you can feel off or perpetually fatigued. Doing this gives you time to collect yourself before rejoining the world.
5. Let Yourself be Angry
Seizing is not fun. It can be annoying or terrifying. Also, it can be especially frustrating if you did everything right (per step 3) and your body still decided to betray you. Your body and brain are supposed to work for you, but instead, they’re both on a romantic getaway in the Bahamas without you. Give yourself the space to be angry, frustrated, and annoyed. Punch something (NOT someone). Scream a little. Giving yourself the space to be angry allows you to breathe so that you can move forward from the moment.
6. Take the Day Off (If Necessary)
You might not get the work you need to get done today, and that’s fine. You may be on a tight schedule or have something that’s been overdue for weeks now (my life at the moment) and this seizure just extended that even further. As someone who values work and likes to feel like I’ve accomplished everything I wanted to, my seizures don’t exactly help me achieve my daily goals.
Despite how strongly it sucks, your health is ultimately not worth it. Let things go. Let the work remain unfinished. You’ve got more important things to do because your life is ultimately not worth a finished deadline.
7. Treat Yourself
Put on a face mask. Do your nails. Take a walk. Watch TV. Light a candle in the name of Hecate. Get naked and go pray in the moonlight to the old gods. Read a good book. Whatever you decide to do, do whatever you need to do that makes you feel good.
And finally, last but not least:
In hindsight, this step should probably be higher on the list, but this seems like a good place to end.
There are several feelings wrapped up in having a seizure: fear, anger, disappointment, rage, guilt. The feelings can be overwhelming, and if you’re like me and resist crying at every given moment because you would cry at everything if you let yourself, sometimes the only way to get all of that shit out in the open is to break down and blubber like a child.
Of course, your list may look different than mine. You might decide that it’s more important to focus on creating positivity rather than wallowing in your feelings. Regardless of what your personal list looks like, it’s important to remember that, ultimately, having a seizure doesn’t make you a bad person. Having a seizure is not a reflection on you or your choices. There are several ways to prevent seizures and then take care of yourself after the fact, but the most important thing to remember is that you are not solely responsible for the seizure. The hallmark of epilepsy is “uncontrolled” seizures, not “you should try harder, why aren’t you paying 50 dollars a month for a spinning class, you piece of shit” seizures. Sure, there are preventative elements, but you can do everything right and still seize. That reality is incredibly frustrating but it’s also a bit freeing. Despite what others may say, you are in fact not the reason you seize.
This is not to say that seizures should just be left alone without any intervention. On the contrary, treating them is vital. All I’m saying is that we tend to prioritize getting rid of seizures over treating our emotional selves in relationship to having seizures.
In light of that, let’s say that we’ll start this new year with the more realistic goal to take better care of ourselves rather than to “not seize.” In doing so, fewer seizures may follow. And if they don’t, at least you’ve put yourself first. You’ve done everything you can, and while seizures are dangerous and shouldn’t be left alone, you know that you’re trying your best.
Happy New Year, and see you next month!