Life with Epilepsy

As I’ve shared before, I’ve been off work on short-term disability since March due to break-through seizures. I can’t tell if my epilepsy is resistant to medication or if I’m just having the most horrible, inconvenient side effects possible before we can tell if the meds would be helpful, but either way, I’m kind of screwed. I’ve been seeing a plethora of doctors and specialists– neurologists, psychiatrists (a lot of the medications used to treat seizure disorders are also used to treat psychiatric conditions like bipolar disorder), my family doc to help coordinate it all, etc, etc, etc and now the children are home from school, so I’m trying to juggle their summer schedule and keep their lives as normal-ish as possible.

As I’ve also shared, my therapist suggested I take my love of writing and write a bit about what life with epilepsy is like. My immediate response was to dig in my heels and say “Screw that. I don’t even want to have epilepsy, let alone write about it.”

But the past48 hours have been the absolute worse. I’ve been on and off what someone along the way has eloquently described as “the med-go-round” and because most of the medications are dealing with brain chemistry, it probably is no great surprise to anyone that as we try different medications, most of which either haven’t worked or have had side effects that so negatively mess with my quality of life that I would rather have seizures, my mood has been up and down… mostly down.

And so, forgive me if I write myself out a little. This is what living with epilepsy has been like for me these past three-and-a-half months.

  • Each week I have anywhere from one to three doctor appointments. Each one has a co-pay for $15 to $30. One of my doctors is over an hour away, via the turnpike.
  • Most of the meds leave me exhausted. Some leave me sad. Today I got up at 8, traveled over an hour to the doctor, traveled back home, climbed into bed and slept for two hours, woke up for an hour and chatted with the children, napped with Molly for another two hours. Every new med, every med increase seems to leave me exhausted. Many of the also have caused insomnia at night, which means my sleep comes in one to three hour spurts. Some have caused nightmares. If I happen to have a seizure, that also leaves me exhausted, sometimes incapacitating me into the next day.
  • Other fun side effects have been dizziness, visual disturbances, aphasia (fishing for words, an inability to express myself, making bizarre substitutions of one word for another), severe stuttering, balance issues, agitation, anxiety, weepiness, muscle weakness and pain, nausea, an inability to taste with the front of my tongue, loss of appetite, forgetfulness, headaches, suicidal ideation, lethargy, a change in seizure patterns, new types of seizures, and sensitivity to light and sound.
  • I feel stupid a lot of the time. I know it’s the medications, but for someone who values her ability to think critically and creatively and to express herself, this is a big deal.
  • My stretch marks are out of control. I’ve been on some medications that have caused me to lose weight rapidly– 17 pounds in 5 weeks– and on others that caused me to quickly gain weight. I did invest in some decent stretch mark cream. And much as I’d like to believe the whole “I’m a tiger who has earned her stripes” thing, the fact is I am self-conscious enough about it without adding to it.
  • I constantly feel like I’m letting the kids down. While I try my best to hedge things with “If Mama is feeling OK, we might…” or “We’ll see how I feel,” that’s not what they hear. They hear a plan and then they hear me break it, and it hurts my heart. Sometimes I get a friend to come along to help take the pressure off. Sometimes I just force myself, and I’m that mom everyone is judging who sits off to the side and messes around on her phone, because that’s the only way I can stand the light and the noise and the crowds.
  • I’m scared about my future and work and how I will earn money. And not working means all my routines and structures are gone. It also means that all those opportuniies for positive feedback and affirmation– because let’s face it, no one pats you on the back and says “I really like how you handled that” or gives you a review or tells you good job or evaluates your progress when you’re staying home with a chronic illness– have disappeared. And right or wrong, I am a person who likes outside validation.
  • My attitude in general feels negative and wrong. I mean, I’ve always been an introvert who is prone to worry, but I feel like I’ve gone from a somewhat bubbly person who likes adventure and excitement to a person who is scared to even take a shower.
  • I own picture books with titles like Sometimes My Mommy Has Seizures and 9-1-1 and read them to the littles once a week. We practice 911 calls. They all know how to unlock my phone and reach my emergency contacts.
  • I’m not supposed to drive.
  • My OCD is kicking in. I know it’s a reaction to feeling out of control. I have a ten page word document to-do list and I’ve convinced myself that if I can just get it all done, everything will be OK. Problem is, I’m too tired to do any of it. There is an association of OCD with epilepsy, as well as an increase in anxiety and other mood disorders, and even a higher risk of suicide.
  • I have binge watched a lot of Netflix.
  • Fear of a seizure often leads to me canceling or changing my plans. I limit my fluid intake because I don’t want to have an accident. I avoid places with hard floors or fluorescent lighting. I shop at places that have pharmacies so I can go and explain what’s happening if I feel like I might have a seizure. I plan my routes based on flickering lights in tunnels or the sun strobing through the trees. I stay in bed a lot. I make sure people know where I am and how I’m feeling. I don’t lock the bathroom or my bedroom door, just in case.
  • My mood swings, negativity, and fear are hurting my relationships. I don’t want to burden people. I don’t want to tell them how I’m really feeling. I’m tired of always being the negative person who grumps about how she’s feeling, cancels plans, falls asleep in strange places. I’m withdrawing from people and sabotaging relationships. I don’t ask for help. I don’t want to push. I’m tired of being needy.

I’ve tried to think of something positive that’s come out of this. Maybe I’m learning to be flexible? Maybe I’m learning to ask for help? Maybe I’m learning to advocate for myself? I don’t really think I am though. But maybe I will?

I don’t want to write about this again. I didn’t want to write about it now. But I’ve spent the past 48 hours mostly in bed, mostly asleep. I’ve stopped one med. I’ve started another. I’ve had two appointments this week and missed a phone call from my neurologist today. I’m feeling frustrated and negative, and I hate it. But I really am trying desperately to find something good in it all. I’m not looking for beauty or joy or even a life-changing experience. I just want to make it through at this point, and maybe come out the other side a tiny bit stronger.