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!!