Epilepsy Update 23 December 2016

Sometimes I feel a little embarrassed while writing some of my blog entries, specifically the ones where I wallow in self-pity, whining about how nobody understands, that I don't have anyone to talk to, or whatever else I may whine about at times. I'm also embarrassed by the weakness I so often feel, the exhaustion and lack of resilience. I'm tempted to say the lack of manliness, but maybe that would be macho or something. 

I'm tempted to downplay those things, to be dishonest and put on a tough act. After all, there are people out there who actually read this blog, and what in the world are they going to think of me? They may think I'm a big baby who should wipe his nose, man up, and get back to work ;-)

Then I remember the purpose of this blog, the reason I started it: first and foremost to help others, and there are surely other epileptics going through the same emotional difficulties, and who will be able to identify with what I write here. I remember truly being strong and healthy and working hard and having strong shoulders and providing well for my family, etc, only to have all of that be changed in an instant by a grand mal seizure- two of them back to back actually- out of nowhere, no prior history. A couple of years and a few more seizures later I was given a box of pills and an official diagnosis of Epilepsy, told to never forget to take my pills and to come back to the neurologist regularly. Then sent home. Oh yeah, and don't drive a car anymore...

They don't tell you much more than that, they don't. There you are, you're emotions go crazy every day and your brain doesn't work right anymore, and you're having some funny kind of seizures every day, and you're like in a fog all the time, and you're exhausted and sad much of the time, and full of anxiety, and much, much more. It's embarrassing and you try and hide it and act normal- I didn't tell anyone I had Epilepsy for about 3 years after I was diagnosed- but it's not possible to act normal. When my condition had gotten so bad that I was basically forced to tell my colleague with whom I shared an office, back when I began "coming out", she said that she had been convinced that I was on some kind of illegal drugs or something!



That was when I began to search the web, and found Epilepsy foundations and forums and chats, and began to see that the things I was experiencing were basically "normal". I began to feel relieved. I discovered that there are a lot of common denominators, but a lot of individual symptoms and accompanying afflictions as well, depending on different factors. I found that basically all Epileptics have most of the problems I talk about here in my blog. Hence my being as honest as I can here, hoping someone else may see that what they're going through is "normal".

You can't get rid of those things. They won't go away. Everybody on this earth has their ups and downs, but Epileptics are under strain every waking moment and that's a constant drain, one that never ends. It's no wonder we're more susceptible to emotional problems. Since you can't make them go away, all you can do is cope with them. 

Downplaying those feelings, as embarrassing as they may be, and acting tough out of fear of what the people who read this blog might think of me is not coping with those things...

Most of all, what I read back when I began to discover forums and blogs about other's experiences set me on the road to acceptance of my condition and finding ways of coping, and learning to live with Epilepsy as best I can. 

I think the first step is being honest. Epilepsy and all of that accompanying crap, and going to work every day with seizures and migraines and people wanting to talk and interact when you need to rest up in between, etc, etc, etc gets on my nerves and drains my energy and sometimes I just get feeling really sorry for myself! Sometimes I feel like I just can't go on, like I just don't have the strength. There are good phases as well: Sunday to Wednesday this past week were seizure and migraine free, for example! Then it all started again yesterday evening...

That's one of the main points of this blog, showing the true condition as it really is, and the process of learning to cope with it, live with it. How do I not surrender when I'm so sick and tired of it all and exhausted and feel I can't go on? What can I do when anxiety is clawing at my throat? Surrender or fight? How can it be fought? How do I deal with it when I'm basically "crawling on all fours" and my soon-to-be comes home from work in a really bad mood and lets it out on me? The list goes on and on...

I try and explore these things here, writing about my efforts to overcome through staying calm and in control, working out, and who knows what other avenues I might discover in the future that might help. 


So I'll try and continue to be honest even if it embarrasses me sometimes...





Maybe someone will find something here that will help them in their own struggle with Epilepsy, or in just understanding some of the things Epilepsy does to a person. I know that a lot of friends and family members of epileptics read blogs and forums as well in an effort to understand what their people go through every day. 

I've always harbored a secret hope that maybe someone will share their own experiences in the comments section, or thoughts/suggestions regarding what I've written...