Limits are REAL(ly Inconvenient)
I've had several seizures in the past month, and even though they haven't been as violent and the post-ictus phase hasn't been as long (thank you cbd), they are still affecting my life in a big way. I am still waiting to hear about the Epidiolex. The first plant derived cbd:thc medication approved by the FDA. It would have a consistent dose which seems pretty appealing, and much cheaper since I could go through my insurance. It's been over 2 months and they are still trying to decide if I qualify. Give me a break! It is the only medicine I'm willing to try at this point because there is hope that it could work. The cbd is helping already, that is obvious, but I want to try it with thc and would prefer not to get high, which it promises. I also think that the side effects would be null in comparison to other medications if there even are any.
I need to get completely off my seizure medication, but unfortunately until I can try this new one I can't safely stop taking it. My epileptologist let's me know that without any type of medication, SUDEP is much more likely. That one day, I might not wake up. I know that the chances on finding a cure are limited, so I tell myself my seizures aren't that bad. But then again, the black eye, bruises, and medical bills tell me otherwise. I constantly wonder when my next seizure will be, and try to stay aware of any triggers or auras. It's exhausting, as I'm sure a lot of you know. I just want them to stop.
I haven't been able to drive in almost a year. My car will be paid off this month and I still won't be able to drive it for another 2-3 months, maybe never if I keep having seizures. I don't want to sell it because I love it and I want to be able to drive it. But, is my need for independence worth the chance of causing an accident? Regardless, I don't know if driving will ever be an option for me because I can't seem to get the seizures under control. So what do I do? Let my car patiently wait for me, or admit that I might never have control over my seizures and sell it? I am still in deep denial that I won't always have to be dependent on other people.
Not being able to drive is the biggest reason I live downtown. That way I can get to work by walking, taking the train, or even taking those little city scooters. Living this way makes me feel independent, and because of that sometimes I feel normal. I can walk to the grocery store, the pharmacy, restaurants, just about anywhere I need to go.
Another aspect that I am trying to overcome is admitting that I need special accommodations sometimes. Asking for them makes me feel stupid and embarrassed which I know isn't fair. It's these times that I finally have to acknowledge my limits, it's depressing and painful. Everyday I try to tell myself that having brain fog, confusion, panic attacks, mood swings, muscle pain, etc aren't a big deal. It's nothing that I can't handle. There IS nothing I can't handle.