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What if others say they're afraid you'll have a seizure?
A friend recently came to town and he wanted to get together for lunch. On the way to the restaurant, he looked at me with trepidation and asked, "What do I do if you have a seizure?" Many of us are so used to epilepsy we don't even think twice about what it must be like for our family and friends to be with us. During the holidays, I once again saw some of my family giving me some distance, especially while I had a mini-absence seizure at Costco (not convulsive, but...well, you know). I'd love to know how you have handled this, especially getting together with people you haven't seen in ages.
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Thank you for your response.
Thank you for your response and a reminder.
@randallshields56 I appreciate how frustrating this process can be, but having a neurologist who is committed to lowering the incidence of your seizures can be a very good thing. I'm not sure if you do this, but I have kept a seizure journal whenever I start a new medication or have an adjustment to my dosage. I go one step further and also track all my medications just to be sure there are no unintended consequences.
For example, my PCP provided a new medication for another condition, which in turn had a profound impact on my seizure incidence.
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5 ReactionsThank you
Doctors appointments today, their additional med now is another seizure med. Not what I wanted to hear. But going to follow their lead, i have a good neuroscience doctor that works well with my daughter's observations.
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4 Reactions@randallshields56 thank you everyone
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2 ReactionsThank you for the hug 🤗
Thank you have a wonderful evening and a blessed one.
@randallshields56 ps, didn't see it coming back to back type of event, but had to help my daughter through one of her seizures. Was a long day and night around here. Have a blessed day today 🙏 everyone 🙏
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3 ReactionsFriends who I haven't met in awhile will wonder for sure. When meeting with people who you haven't met with awhile and won't know what to expect, be the one to start that topic. Be the one who takes the initiative to get that topic out of the way, say no need to panic at all and when only to be concerned. They may be hesitative to ask you. Once that's out of the way, everyone can relax and all will enjoy yourselves. They won't go call ambulance or something if you have a seizure.
For our loved ones, no point telling them don't worry. They will worry, no matter. I will just do what they want to put them at ease. Want me to always have someone around me even in the bathroom? Sure. It will mean I will lose my privacy, but it comes with the condition. I can't go jog in the park because no one loves jogging? Sure. I will find other ways to exercise even though I love the park and there's a Starbucks there I used to just chill and be alone, grabbed a cup when I felt like it. I no longer have my alone time. But then, I must also remember my loved ones also have to deal with a "new" me, and put up with it too.
I am an atheist. I don't have a religion, but I do believe in fate. When it's my time, it's my time. The fact I am still here even after the doc told my family to be prepared? Well, maybe there's a reason? I don't know.
Let's see.
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