In August, I’ll be publishing a book on epilepsy. It’s a practical introduction to living with this disorder, aimed at those who know someone who experiences these episodes. I thought I would take today and share a brief look at living with someone with epilepsy. Because epilepsy has no outward signs, it’s one of the disorders that does not get a lot of attention. Consequently, society at large has little information on what it’s like to live with, or what to do if they know, someone with epilepsy, or what to do if someone has a seizure around them.
For my purposes, I will say that there are two types of seizures, although that’s not exactly accurate. There are grand mals: what you see on TV; they cause the person to fall and shake. They are scary. The other types, which I will loosely lump into “petit mals,” can vary in characteristics, but typically may look like the person is staring into space.
Daily life is normal at our house, for the most part, especially now that the regularity has become less frequent. However, here are some things that I think about regularly which I think most people probably don’t consider:
- (Walking into a restaurant) “Hmm, which table has the most natural light, does not have a view of a ceiling fan, doesn’t face a mirror, and has no weird reflections on the window?”
- “Oh, dear, I don’t think we can eat __________, since canned goods were used to make it. It probably has MSG, and that makes Hubs sick immediately. What do I say?”
- “I hope Hubs feels okay. He’s rubbing his face a lot.”
- “I’m so glad it’s winter. Hot weather is so hard on the brain.”
- “Can you please calm down? Your manic energy is getting Hubs keyed up, which is a no-no.”
- “I haven’t heard a sound from Hubs in awhile, I’d better check on him.”
- “I know your memory isn’t always awesome, but seriously, I told you this yesterday, last week, and 5 minutes ago.” (I actually love talking, so repeating myself isn’t really a big deal.)
I wouldn’t say I’m “used” to it, but it’s become enough of a part of life that sometimes it’s hard to let go of the stress. As I said, now that things are improving, I’m working to rearrange my way of thinking to include more positive/non-stressed thoughts, but it’s definitely a process. Hubs is hot though, so it’s totally worth it. 😉
Stuff you should know: (Things that apply across the board, although each person will have different triggers, habits, and things to watch out for)
- Number 1 rule: Do not let the person go wandering about until you know, for sure, that they are recovered and in their right mind. If possible, call someone for them (parent, spouse, etc).
- It’s always okay to call 911 if you don’t know the situation, but often, the person may be accustomed to having seizures regularly, in which case they will likely seize and then return to normal. (Obviously, some places are concerned about liability, which I understand. Hubs got super annoyed anytime someone called 911–he was fine, he just needed someone to come get him.)
- If a person has a seizure, it ends, and then begins to have another, call 911 IMMEDIATELY. This is called status epilepticus, and can lead to brain damage or even death.
- If a person falls, they may hit their head, or even break a bone. While you should not try to control their fall if doing so will injure you, it’s okay to try to carefully keep them from landing in a bad way. If there is an injury, obviously seek medical attention.
- The person may be (probably will be) disoriented. This is normal.
- Be aware, particularly with kids, that if they seem to be staring into space or not paying attention, that they may be having absent seizures. These are barely noticeable to an observer, and have few to no after-effects.
- In general: triggers may be scent, visual, or even hearing related. Notice the environment, and offer to alter anything you have control over if needed (lights, etc).
What Not to Do: It’s super old school, but back in the day people used to think you should put something in the mouth to prevent tongue biting or swallowing. Do not! The person might choke, and while some people (not all) chew up their mouths pretty good, it’s better than choking.
Many people are lucky enough to get relief through medications or surgery to implant a nerve simulator and lead a completely normal life. Others have refractory epilepsy, which means very difficult to control. You may not know that the person next to you at work is experiencing this, but it’s possible.
Do you know someone with epilepsy or a chronic illness? How does it affect the way you think? How do you stay positive? Leave a comment below to raise awareness about those things close to your heart!
On that note, Monday I’ll be posting about ways to stay positive despite hardship. I’ll see you then!