First – let me be clear that I understand Seizure Disorders are serious business. They change people’s lives, restrict certain levels of independence, require daily medicine that have side effects, and in some cases can be deadly. I have the risk of death myself thanks to the new lesions and screwed up electrical connections in my brain. BUT sometimes you have to laugh and poke some fun at your situation and let’s face it, those of you with seizure disorders will likely relate. If we don’t laugh, we risk falling into a pit of despair (eh, see that Princess Bride reference there? Don’t fret, there will be more.)
Daily medicine – keeping track of when and whether you’ve taken your medicine. This includes using medicine organizers, alarms, back up alarms, texts from loved ones, and perhaps more. We also keep any emergency medicine on our person at all times – educating loved ones about when and how to shove it in our gobs (chocolate coating not necessary.) We remind our friends and teach our children that calling 911 asap is essential if we’re likely to have a status epilepticus experience. This may only be necessary for those of us who have tonic-clonic (or grand mal) seizures.
Traveling can be stressful – making reservations, packing, arranging care for your pets and/or children, and beginning to adjust your medicine timing if you’re changing time zones on your trip. One thing that most of us with seizure disorders do (I assume) is research where the nearest hospital is at our destination, just in case. Booking accommodations near the hospital might be a little excessive, but somehow it doesn’t seem weird to me.
To tell or not to tell, that is the question. It’s always a challenge deciding who you tell and what you tell them. I volunteer at my youngest child’s school – should I tell the office staff, the librarian, and/or my child’s teacher? And if so, how much do I tell them? Education is always a good thing, but I haven’t had a seizure in a year. I wear a medical bracelet, but let’s face it, there’s only so much information you can put on that little ID Tag. If you tell, you may have to deal with the nervous anticipation, the sideways glances, the pity (in some cases), and the eggshells they’ll be walking on around you. The Fire Swamp is tricky to navigate.
Phones – everyone has a cell phone these days – well there are some hold outs, but generally everyone has a cell phone. I’ve been instructed explicitly by my husband that my cell phone is to be charged, NOT on silent mode, and on my person at all times. Not being able to reach me causes fear and panic and that’s no fun for anyone – especially my husband (I can only say ‘as you wish’.) Portable charging devices are a nice addition to this plan.
Eating, snacking, hydration, and sleep are all critical for me to avoid a seizure incident. Different people have different triggers, so knowing your triggers is important. Yes, I carry a snack and a bottle of water with me everywhere. Yes, I have no problem taking naps, sometimes 2 naps if I feel tired (get some rest. If you haven’t got your health, then you haven’t got anything.) Yes, I eat regular meals. I think these things are generally common for all of us with seizure disorders. Anxiety can also be a trigger and I always wonder if you can worry to the point where you actually trigger a seizure while you’re worrying about having a seizure…
Strobe lights are bad. Very bad. Some people think they’re cool, but these people clearly don’t have seizures. Come to think of it, any flashy lights are bad. Just don’t go there, it’s too risky. Take the time to enjoy the view (outside), have a cup of coffee, read a book or chat with a stranger while your friends go into the flashy light experience.
A simple swim is no longer a solo activity. Swimming now requires the buddy system. Pick someone you like. Think twice about skinny dipping. Just sayin’…don’t try to go into the Fire Swamp alone, that requires teamwork.
Driving is a privilege. Don’t abuse that privilege. IF you feel wonky, don’t drive. If you’ve had a seizure, be prepared to implement plan b, c, d, or e while you wait for the 3 – 6 months without a seizure (fingers crossed) before you can drive again. You may have your license suspended for longer or revoked altogether, so have a plan to get your kids to and from school. Learn your local bus routes, get your bike all tuned up, tag along with your neighbors/friends while they run errands, and get used to walking. Not driving is inconvenient, but its better than being dead or even mostly dead.
Since I discovered I had a seizure disorder (by having seizures) I’ve become WAY more conscious of my underwear decisions. At the risk of over sharing, I follow that advice ‘Wear clean underwear just in case you have an accident.’ I tend to lean more toward the standard chonies rather than the fancy, lacy kind. I know if I land myself in the hospital, I’ll end up without my underpants and those nurses who remove them have seen it ALL before…but somehow I like to know I won’t be embarrassed by the condition of my underpants (‘I just want you to feel you’re doing well. I hate for people to die embarrassed’.) In addition, if aliens come down to add to their collection of underpants, I’d like to offer a nice option (this is not a reference from The Princess Bride, but it’s still funny. Well, I think it’s funny.)
Note: if you’ve not yet seen or read The Princess Bride, do so immediately.