Making Plans

October 29 is World Stroke Day. I love telling people my story, but I still struggle with living with the aftermath of my stroke. Sometimes I don't know what's worse. Trying to explain myself to doctors that don't  understand or being forced to explain myself to people that make me feel like I'm just giving excuses. This week has been a tough one on us. I say "us" because recovery is a family affair.

I had two of my seizure-like episodes (un-diagnosed but suspected to be a form of epilepsy) this week. After I have one, it takes me a few days to recover. I feel exhausted and drained for sometimes a week afterward. My seizures consist of periods of time in which I sort of just black out. Most of the time I remain conscious, but every once in a while I lose that time entirely. During these episodes I am unresponsive, dizzy and nauseous. After these episodes I am nauseous, I usually have a headache, I am tired and my right arm and leg hurt even more than usual. Sometimes I get angry and obstinate after these episodes with whomever is directly around me, but not always. I am not supposed to drive for six months after I have an episode. Even though they haven't been able to diagnose them as seizures, I have "periods of non-responsiveness" and am therefore not permitted to drive. I'm a liability.

This weekend I have volunteered my services for the annual Fall Festival at my children's elementary school. I felt so bad telling the PTO (of which I am a member) that I am happy to help out, but I cannot do much of anything. I need to have a job where I am sitting most of the time. I always feel like I am giving excuses when I have to say things like this. We had a hard time finding student volunteers this weekend because our Fall Festival coincided with the local high school's Homecoming Dance. And here I am saying, "Well, I'll help, but not that much." I'm in charge of tickets that day and I agreed to help with clean up. It's just the looks I get when I try to explain why I can't be on my feet all day, why I can't use my right hand, why I can't run multiple booths, why I can't carry anything too heavy... Excuses, excuses, excuses...

Next weekend we plan on taking the kids to the Renaissance Festival. My husband is so concerned about me and knows that I will do anything not to ruin my children's fun, including letting myself go through the day in pain, that he wants to rent me a wheelchair for the day. I think it's a good idea. I know that I can't go the entire day walking around without having to be flat on my back for the entire next week because of the pain it will cause in my right leg. My medication isn't working, something I need to call my neurologist about. Again. I don't know why she's so stuck on me taking Neurontin, but that's a different story. It has me wondering now if I can persuade my doctors to help me get a permanent wheelchair. We already know that I end up being housebound because I can't walk due to pain. I avoid day-long activities and outings because of it; have for three years now. I have even turned invitations down because of the physical exertion that it would take just to go out. To us it makes perfect sense, but I don't know that it will make sense to the medical community. I guess it doesn't hurt to ask. And it's not like I would take advantage of it. I would only need it so we could do all day outings like museums, fairs, festivals, concerts and such.

Stroke recovery is a never ending process. It has been quite a journey trying to find the right doctors, haggle with insurance and fight for my patient rights. It upsets me that I still have to deal with stares and ugly looks from perfect strangers when I park in a Handicap space. But I have finally found my voice. It took a stroke, but I feel I finally know who I am. Deal with it.