First off, I have an amazing health team to help treat my Refractory Epilepsy. I have a top notch epileptologist, Vagus Nerve Specialist who comes in from out of town once a month, an epilepsy nurse who is fantastic, a neuropsychiatrist who I see every 6 months, and a psychologist who I see once a month. Plus I would like to add my family and friends. Whew! What an amazing team!
Although my epileptic seizures are under pretty good control now (HALLELUJAH!) there are things I need my team to know. Epilepsy is not just seizures. Epilepsy now for me means counting my spoons ever so carefully. If you don’t know what the spoon theory is, check it out here: the spoon theory.
I always need to make sure that I don’t over-book my agenda. If I have appointments that week, I really can’t over socialize. I also need to make sure I have time to help my fiancee around the house and grocery shop on the weekends.
So, health team, I need you to know that I struggle with anxiety and depression, despite the fact that my seizures are much better controlled. I need to opt out of things last minute if I am feeling exhausted. I am doing my absolute best, but sometimes that means combating the depression or anxiety that looms over my head on a regular basis. Just because the seizures are gone, there are still things that I need to work with. Don’t pity me, I just need you to know. I am a chronic illness warrior, so I keep fighting the good fight.
Thank you for doing all of the amazing work that you do! I couldn’t get through it without all of you!!
I hope you had a good weekend. My weekend was off and on. It started on Friday when I found out that there were cuts being made to the Epilepsy Clinic I go to and that my psychologist won’t be there anymore. I hugged him, and left his office absolutely devastated. It was a weird mix between devastation and seething anger. It was a stormy day, so I sat in the Starbucks attached to the clinic for awhile, and then braved the cold of the storm.
I soon realized that my anger distracted me- I ended up taking the wrong bus and then hopped off and went into a Chapters (aka Barnes and Noble). I picked up Brene Brown’s newest book, Rising Strong, and then hopped on ANOTHER wrong bus. GOOD HEAVENS!
I finally hopped on to the Skytrain and found that all of my pent up emotion was starting to come out in small seizure like bursts. I was sitting down next to a dude, and then I leaned to my left ON TO HIM and started to seize. It was a short seizure, and I embarrassedly explained to him that I have seizures. Thankfully he took it well.
That evening was a mess of more seizures. Today I lay in bed on a Sunday evening, where I slept soundly until 3pm. Today I have not left my house. Now one thing is very clear to me: Epilepsy is one hell of an isolating condition.
It is easy to not leave your house in fear of a seizure. This is for injury or for fear of embarrassment. To look like a fool. An outcast. You look ridiculous. All of that attention was not warranted when you toppled over. You just want to be normal in the world.
Even if you WANT to be part of the camaraderie that life has to offer, you might be too ill to jump up and join in. I am an extraverted person, so this can be very hard to take. I miss my friends. I stand by the river and watch.
This. This is the Isolation of Epilepsy.