Last night whilst chatting to my Mum, I had multiple, intense seizures. This isn't abnormal. When they occur, my seizures often happen two or three at a time with a brief respite in between. They usually coincidence with my monthly cycle, so I'm prepared and my service dog is always with me, so I don't worry anymore. My Mum isn't used to them as I am; apparently it frightened her. I get fuzzy and I cannot form words well during my postictal state, so unfortunately, I don't remember well. It's an odd thing to try to explain to those who haven't experienced it.

Before my seizures started, I knew little about them as well. I guess it's like most medical conditions; you're often unaware of many things unless you or someone you know is affected. Even then, I think it's tough trying to explain what things feel like when the other person has no frame of reference. They just don't get it. They can and probably will try, but they won't fully appreciate it. I didn't understand the excruciating pain my father experienced from CMT (Charcot-Marie-Tooth disease), the weakness from exertion, the lack of grip strength and loss of fine motor skills, the GI stuff and the proprioception difficulties until I began experiencing all of it; I thought he was making a big deal of I know, because I experience it daily.

I value independence. I work hard to be prepared to handle the side effects of my conditions. For me, it's like going into battle; prepare for the worst, hope for the best. So, when I need Depends, because my bladder isn't behaving or I know I may lose my bowels to a seizure, I look at it as being ready. I keep extra pills, water, and a fully charged phone by my bed in case I'm too weak and I need help or meds. Apparently, some people who don't need to do this hear about it and think I shouldn't be on my own, or they don't understand, because they don't appreciate the weakness after a seizure or a long day: sometimes I can barely lift up my head.

I guess this was just on my mind. I don't like worrying my family. My father gets it, but my Mum...I don't like when people think I'm too ill to be independent. Then there's the strangers who think I'm trying to get attention when I ask for assistance. I do everything I can on my own. I am fiercely independent as I mentioned previously. 😁 However, working on acceptance this past year, I have been asking for help more when I do need it.

I wish more people could understand, being severely disabled is not a walk in the park. I don't get to sit at home and just relax all day; I use every muscle each time I transfer or do ADL's and I exhaust myself. I push to maintain independence, and I don't feel sorry for myself; it is what it is. I do the best I can and I'm constantly trying to improve the way I do things, to better myself and keep my brain active. I wish people wouldn't jump to feeling sorry, or on the flip side thinking I'm using the system to float through life...perhaps I could write something to educate others about this...

For now, I appreciate if anyone read this and connected to it or gained something from it. I need to go rest. May we all remember to do our best in life and be grateful for those little moments that add up to make a whole life lived. If you're struggling, know you are not alone, and though it may be hard, try to find something to say, sing or do to make you smile. Then breathe that in and keep it close. Namaste.