Translate

Monday, February 27, 2017

Epilepsy Update 27 February 2017


A part of me is always working in the background to remain calm in the face of threatening anxiety. 

"Don't believe that nameless, undefinable feeling of dread", are the words that constantly repeat themselves over and over again in my head. "That feeling is only an illusion." 


My mind wanders to the hundreds of people with Epilepsy I've met in blogs and chats who all deal with that same feeling, and I know that what I'm going through isn't anything exceptional, nothing to "worry about", not a sign that there is anything distinctly wrong in my case.

I am "normal", so to speak...






The sign says Uncertainty, established 2008. The end of January 2008 to be exact, when I had my first grand mal seizures out of the clear, blue sky. No prior history, after 48 years of pretty much perfect health. Up till that point I took it for granted that I would be the same when I woke up the next morning as I was when I went to bed the night before. Making plans for the next weekend wasn't a problem either- there was no worry as to how I might be doing when the weekend got there. 

All of that changed when uncertainty became established in January of 2008. Now uncertainty rules my life. I never know how my brain will be when I wake up the next day. When friends ask me over on the weekend I cannot say yes with absolute surety, because I cannot know what condition my brain will be in. I could be fine on Friday and barely human when I wake up Saturday morning, or barely human on Friday and fine on Saturday morning. 

Also, the beautiful things in life are made uncertain- and even filled with a certain amount of justifiable nervousness. 

Take the coming weekend for example. The 2nd of March is my oldest daughter's birthday, and the 4th of March is mine. For years now we have normally come together around that time and celebrated both of our birthdays together in some fashion. That's a beautiful thing, and a thing you look forward to. This time- the coming Saturday- we will gather in Würzburg (where both of my daughters live), they and their boyfriends, as well as some friends of theirs. It is likely that my Conny will not be able to come along, meaning that I will have to take the train to Würzburg. Under normal circumstances I love riding the train, listening to music with my iPhone and bluetooth headphones, looking out the window and watching the scenery go by. I just love travelling. Most of all seeing my girls is one of the most wonderful things on earth. Any parent with adult children knows how important that is after they've grown up and have lives of their own, and you don't get to see them that often anymore. 

Enter the uncertainty of Epilepsy...

I can have no idea how I will be doing when I wake up Saturday morning. It may be good. It may be bad. It may be pure torture. It may be somewhere in between. I have ridden the train before with my brain so lost in that epileptic daze that I looked up at the timetable board and could not process any of it, eventually fighting my way through to the knowledge that I needed to get to track 9, or whatever track the train was leaving from, then standing there until it came to me that the next step was to somehow find that track, and that the first step to that was to look for signs pointing to where the tracks are. Suddenly the fear engulfs me that I might get on the wrong train and end up in Berlin instead of Würzburg and I find myself paralyzed! My brain begins to sizzle. I am nothing but a cauldron of torture inside.  Automatic processes take over and I begin to calm myself, reminding myself that I just need to go really, really slow, one step at a time, not panic. I "come to" and realize that I'm still standing there in front of the timetable board and no closer to the track that I need to get to. I look around and see masses of people moving in every direction and making all kinds of noise in a scene of complete chaos, and feel a sense of despair wanting to wash over me. All of my strength threatens to leave me. It's all I can do not to give up, not to sit down right then and there and just cry. Instead I breathe deeply, calm myself as much as possible, gather as much concentration as I can, and find the sign that points to the track number I need. Then I slowly, carefully begin to make my way through the crowd toward that track. I turn the music up in my headphones to drown out everything else around me so that I can focus on my own little world and my one goal in life at that point: find that track! Having found the right track, the next step is to make sure it's really the right train that I get on. Once on the train I can finally relax. That is normally when I have a couple of complex partial seizures, when the stress lets off. 

At such times I have then spent the whole day in that Epileptic daze, totally lost and barely able to follow what's going on around me- and trying to hide the fact from my daughters all the while out of embarrassment, burning vast amounts of energy just to stay afloat. When the visit is over that whole thing with finding the right track and getting on the right train begins again...

On the other hand I've traveled to Würzburg on the train when my brain was ok and really enjoyed it!

It is not too often as debilitating as the situation I wrote about above, but there is always the fear that it may happen again, or that I could have a massive complex partial seizure- or even a cluster of them- while on such a trip alone. Still, I will have my rescue medication along. On top of that I live among a very helpful people. I could always find someone who would help me if I were to need it.

So what will it be this coming Saturday? Who knows?






At least nobody could ever claim that life with Epilepsy is boring...

Friday, February 24, 2017

Epilepsy Update 24 February 2017



What a horrifying week it was...
Another monster migraine, and it's still going on as I write this. 


Let me start with something positive however. Last week was a pretty good week with only a couple of light complex partial seizures. My old friend the epileptic daze was fairly light as well the whole week- and throughout the weekend too. Come to think of it Monday was a good day too, and I really thought I was in one of those really good phases and began hoping it would last forever. 

But I woke up with a raging migraine on Tuesday morning. I struggle for words to describe how debilitating it was, how horrifying. I felt barely human. Thought was barely possible. I was lost in a thick fog. I stared at the world, yet was not entirely able to grasp what I was seeing. I felt like I weighed a ton. The thought of getting ready and going to work felt like an impossible task, let alone working all day. 

The automatic processes I wrote about in the entry called "Epilepsy and Working" kicked in, and I got out of bed and got going. My body took over and did all the necessary things to get ready for work, while I myself was in a blinding daze- and fighting to keep from getting tied up in knots inwardly. 

I spent that entire day on automatic, lost in that blinding daze, sometimes even having vision and motor skills difficulties. I was so exhausted by afternoon that I felt like I was going to collapse on the way home from my last appointment- which had been in town. It was like each and every step took massive effort. 

The migraine was just a little better on Wednesday, but still debilitating. It's stayed at that level since then. 

This is exhausting. I have to be careful too, because there comes a point- after days with a migraine- where my nerves get so shot that I can easily become aggressive- not physically, but I'm in danger of snapping at people in impatience, for example. 

I doubt that this is interestingly written, and it's short, but I'm going to quit here...

Monday, February 13, 2017

The Forced March




Mamma, mamma, can't you see?
what the army's done to me?
Mamma, mamma, can't you see?
what the army's done to me?

Woah woah woah woah...
woah woah woah woah...
woah woah woah woah...
woah woah woah woah...

I used to date a beauty queen...
now I pack an M16...
I used to date a beauty queen...
now I pack an M16...

US Army marching cadence 


I grew up very tall and very skinny, extremely shy and insecure, afraid of my own shadow. All of the other boys were stronger than me and it was no rare occurrence for me to come home from school bruised and bloody from a beating. I never fought back because I was a complete coward. I dreamed of being strong and tough someday, of growing up to be a real man, no longer a sniveling cry-baby as I was at the time. 

Double tragedies in my 15th and 16th years of life left me struggling to make it alone in a city with a population of about 200,000 people. I really tried to make it on my own, going to school during the day and washing dishes at a restaurant at night to pay for the little room I was renting, but it was simply too much for me as traumatized as I was. I finally called an Aunt and Uncle who lived on a farm, and they took me in. They loved me and did their very best to help me but I'm afraid I was already too far gone by that time. I went wild, got into drugs and alcohol, really went off the deep end. 

I realized maybe 4-5 years later that I was in the fast lane to nowhere and that I had to do something to change the course of my life, and do it now. Something drastic.






I joined the US Army...




I figured that counted as a pretty drastic move for a sniveling coward who'd often come home from school bloodied and beaten, a young man still traumatized by the loss of his family and lost in a world of drugs and alcohol. In the end it turned out to be exactly what I needed. A sniveling coward went in. A man came out. A tough man, strong and true.

They set up a rhythm right from the very first day in basic training. You get up at 5 am, do PT (physical training), eat breakfast, shower and put your uniform on, then train hard all day. You go to bed at 10 pm every evening, thoroughly exhausted. We had barely fallen into that rhythm when the lights went on at 3 am one morning and the drill sergeants burst into the barracks shouting at us to form up at the foot of our beds. Now anyone reading this who has gone through basic training knows that drill sergeants have a genetic defect: they cannot speak at a volume under 200 decibels. They told us that we had 20 minutes to form up outside in front of the barracks in full combat gear, including M16s and fully packed backpacks. 






When a drill sergeant tells you to do something, you do it...





Believe you me, we were formed up in front of the barracks in full combat gear 20 minutes later, scared to death, having no idea what was about to happen to us. The drills- each company has 2 of them- walked back and forth in front of us berating us, wondering how anyone could ever expect them to make men out of a bunch of wimps like us, how we were nothing but a bunch of mamma's boys who needed to have their butts wiped for them, and all kinds of other stuff like that. Finally they said, "So, ladies, we're going for a walk. You will keep your M16s one hand width from your bodies at all times (the closer to your body, the easier it is to carry). You will not drink without first asking for permission. If anyone needs to relieve themselves they will likewise request permission (in which case the company kept marching and you had to run to catch back up to them after you were finished)" Then came the commands: Right, FACE! Forward, MARCH! And off we went, off the post and out into the boonies. 

We marched, and we marched, and we marched. We marched for hours. At least we didn't have to march in step! They had said we had to ask for permission to take a drink from our canteen? Well, nobody wanted to and we all waited as long as we could before asking after we saw what they did to the first soldier who asked! Sgt. Taylor tore into him as if he'd shot his dog or something! Told him what a wimp he was for wanting a drink already after only 2 hours! Asked him why he even joined the army. Said he should have stayed home where his mamma could give him a warm glass of milk before bed every evening...

The first soldier stumbled and fell sometime that afternoon. That seemed to destroy everyone else's inhibitions and the whole company- all 40 of us- went down within seconds. Someone began snoring almost immediately.




Sgt. Taylor and Sgt. Bustamonte went nuclear...



Those two drill sergeants ran around with the cords standing out on their necks, their faces red, screaming at us in absolute rage! Whoever did not stand up immediately was not good enough for the US Army and would be dishonorably discharged and would never be able to get a job for the rest of their lives and should not be able to get a job anyway because they were a waste of the air that they breathe and they have been drill sergeants for 15 years and have never seen a bunch of wimps like we were and none of us would ever survive when the bullets started flying and the bombs started going off and did we think the enemies of the United States of America were such pussies that they couldn't handle a little walk in the woods and hopefully the Russians weren't looking down at us with a satellite because we were shaming the entire United States of America and especially the United States Army which has a long proud tradition of tough fighting men who are strong and true and who never give up in the face of hardship and maybe they should radio in for a bus to take us to a girl's boarding school where we could learn to knit socks and host Tupperware parties...

My life passed before my eyes as I lay there on top of my M16 in the dust, somewhere out in the middle of nowhere. I thought of the many beatings I endured throughout the years at school. I thought of my sniveling, cowardly, cry-baby existence up till that time in my life. I thought of my father throwing me to the dogs because his new wife hadn't liked me. Suddenly I felt myself begin to be filled with a slow burning anger, or maybe it was more self-loathing at my own worm-like existence up to that point. After all, I had LET all of those people do all of those things to me. I had never, ever once stood up for myself! I was a weakling. The drill sergeants were right! I was a wimp!!!







I began to channel that anger, that self-loathing, and I began to fight. I got my hands under me and began to push with all my might, my whole body aching and trembling. I was exhausted and weak- at the end- but so determined, and I began to growl like an animal, and somehow managed to get to my knees. Others had noticed and were beginning to make their own efforts. Using my rifle for support I began to fight my way to my feet, nauseous and dizzy, growling through gritted teeth all the while. I finally made it to my feet with a final mighty roar and stood there swaying, only then becoming aware of the fact that my fellow soldiers were also standing up all around me, one by one- all of them swaying on their feet as well. And it was amazing! With each one of us that fought his way to his feet, the rest of us stood just a little more firmly. Soon we were all on our feet, standing tall and steady at attention, having discovered a source of strength deep within ourselves that we hadn't even known existed up till that point. 

Those drill sergeants? They changed in an instant. They looked at us a little differently, more respectfully in some way, even if they didn't say it. They took up their position and commanded: Forward, MARCH!

And you know what? We stepped out with a spring in our steps, chests out and heads held high, for the first time really feeling like soldiers in the United States Army. 

And you know what else? We were back at the barracks about an hour later! We had all given up only an hour from our goal! We hadn't known we were that close. If we had stayed on the ground we would have all been dishonorably discharged and sent home, one hour from the finish line, one hour from success.

I've never forgotten that lesson. I've never forgotten in hard times, when all seems lost, when it seems like I just can't go on, that I might be only one hour from my goal...

I'd love to hear any comments anyone may have... 



Saturday, February 11, 2017

Epilepsy Update 11 February 2017


I feel strange...

In my post from the 4th of February I mentioned that I had woken up one morning with an extremely strange feeling in the brain. That was the 23rd of January and everything has changed since that day. 

That strange feeling became weaker the next day but it hasn't gone away anymore since then. It's still there even as I write this. 

I may have chosen a bad time to write a blog post because it would seem that a cluster of complex partial seizures has just begun. They are different since the 23rd of January. I need to stop here for a few minutes until this crap ceases. These seizures have become very unpleasant. 

I just can't go on right now...


Later:
I wrote the above around noon and it's evening now. I only had one seizure after all and not a cluster of them, but it was a pretty hard one and it seemed to last forever. I lay in bed through the whole thing and moaned and wished it would end. I felt weak as a cat during the post-ictal phase and had a pretty bad headache for hours after that. I took a walk much later, thinking the fresh air might help with the headache, but it didn't. It did kind of ease up later though and I even managed to work out a little- which helped my spirit feel a little stronger. 

I began explaining earlier today that everything has changed since the 23rd of January, the day I woke up feeling so strange. That feeling has remained, though not nearly as strong. Yet it's always there, sizzling in the background. It seems to be that well-known epileptic daze that I often talk about- only it's different as I've already mentioned. How to describe it? Maybe I could say that it's sharper, more intense in a certain way. Concentration is more difficult. There's like more of a buffer between me and the world. I often forget what I'm doing while I'm doing it too, and that hasn't happened in a long time. 

The seizures themselves have changed as well. They're more intense and they're nastier, more unpleasant in some inexplicable way. I am often unable to speak for short periods of time during them. I've been having occasional bouts of nausea since that day too. I've written before that nausea scares me because I associate it with grand mal seizures. 

I met one of my charges in town last Thursday afternoon, and it was my last appointment of the day. I began to feel weaker and weaker as I walked home from the appointment and felt a sense of relief as I finally walked around the corner and into our courtyard. I stopped to quickly check the mail, and then a heavy complex partial seizure hit me and I went to my knees- right out there in the courtyard next to the mailbox. I must have knelt out there holding onto the side of the house for 5 minutes or so, hoping nobody would come out and see me like that. Nobody did. As soon as it let up a little I made my way into the apartment on shaky legs. I had another seizure about an hour later, but it wasn't quite as bad. I wasn't of much use for anything for the rest of that evening. I can't even tell you what I did anymore. 

This is no fun, that's for sure. Sometimes I wonder if it will be this way for the rest of my time here on this earth? Never knowing when the next seizure will hit or how hard it will be? Never leaving the house without my medical bracelet on, my rescue medication and 20,-€ for a taxi with me- just in case? Never knowing how I'll feel the next day but knowing I'll have to go to work anyway- even if it's really bad?

My Father in heaven knows where I am and what I'm going through. If he is allowing me to go through this there must be a reason for it. I trust him fully and without reserve. 




I would love to read any comments anyone might have...

Sunday, February 5, 2017

Epilepsy and Working: 05 February 2017



I suppose anyone reading my blog might ask themselves how it's possible for me to even work in my condition, so I wanted to discuss that subject a little bit. Let me begin by saying that the days and times that I write about in this blog are often the "highlights", so to speak, that is the worst days I experience. There are many days in between those "highlights". or "lowlights" if you will, on which the Epilepsy is not as incapacitating and can be coped with, with a quiet heart and a few handy tools. 

That epileptic daze I so often mention and 2-3 daily seizures are basically a part of daily life. Yet that daze and the seizures are generally maybe one third to one half as strong as on those really devastating days such as I wrote about yesterday- it goes up and down in phases, up and down, over and over again, from maybe one third to one half strength. When a few really devastating days do come I always know at the back of my mind that it's only a bad phase and that I just have to ride it out somehow, some way. 

I think it's a matter of attitude:

First off I believe in God. I believe that he loves me, knows where I am and what I'm going through, and that everything good or bad that happens to me has a purpose- even if I don't understand what that purpose may be. I trust him fully and without reserve.  



Secondly I want to work. I want to be independent and provide for myself and Conny, and it is my profession to help people who are in very great need. It is important work and my charges are unbelievably grateful! Seeing broken people slowly getting back on their feet is worth paying any price, isn't it?


Thirdly, my Army training taught me to never give up. I should write a few blog posts about basic training one day. They put us through some really rough stuff in basic training. They pushed us to our limits- both physically and mentally- and then demanded that we go over those limits- way over! Anyone who would not, or could not, was thrown out! Nor did the rough stuff end after basic training. 
No, after that came many
other huge challenges where our limits were tested and expanded, such as four weeks in the wilderness at 22 degrees below zero or four weeks in the desert at 115 degrees above zero. You learned to keep on going, no matter what. You learned to get quiet inside and keep putting one foot in front of the other. Never stop, never back up no matter what. Always keep going in the face of hardship. 



Concentration and memory are huge problems when you have Epilepsy so I've learned to employ certain tools and developed certain structures to help with that. The director of the institute I work for hands out appointment books to each employee at the beginning of each year, and my appointment book is my surrogate memory/brain. It has an overview of the year at the beginning and one page for each day of the year after that. I have added pages for notes for each of my charges at the back. On top of that I have several mechanical pencils and each one writes a different color, each color having a meaning of its own. That appointment book is central to everything I do and is with me every minute of my work day. I make all appointments with that book open in front of me and everything that is ever talked about is written down immediately in the appropriate color, whether in a meeting, a counseling session, or a phone call. If necessary I ask whoever I'm talking to to repeat whatever they said- in case my brain temporarily zoned out and I missed it, for example. If I have a seizure I simply ask them to please wait a moment. Above all I try and stay calm and accept it, work with it, quietly wait it out. That system has been with me for so long, sits so deep, that it works automatically without me having to think about it. When I need any information at a later time all I have to do is flip back through the book and find it because it's all there, color coded and easily found. On a side note: Keeping a seizure diary is important and I use my appointment book for that as well. Since purple is the official color for Epilepsy I have a mechanical pencil with purple leads and I enter all epileptic activity as it happens each day into that book in purple, capping each day with an appropriate "emoji". That way I can give my neurologist a report at our next appointment simply by flipping back through my book and reading him the purple parts. 

On top of that the institute I work for provides me with a smartphone and a flat-rate on everything. All necessary information I may need on anything while on appointments is in that smartphone. I have right temporal lobe Epilepsy, and the right temporal lobe is responsible for things like finding your way, but that smartphone has Google maps and so it leads me around town wherever I need to go. I have a bluetooth headset so that my hands are free when I'm on the phone or being led around town by Google. I also have an app with which I can call up the nearest bus stop and the bus schedule from wherever I happen to be.

I also have a backpack with three big pockets especially for work, and everything I need for work is always in that bag, and only in that bag, never anywhere else. When I need something it's taken out, used, and then put back into its proper pocket immediately afterwards. Same with my keys: they are always either in my pants pocket or on the hook at home. Same with everything I own. Everything has its place and everything is ALWAYS in its place. That all sits so deep that it just takes care of itself. 

I use post-its a lot, whether at work or in my private life. I have several laying on my desk, one saying "memory stick" for example. So when I use my memory stick at work I put that post-it up on my monitor when I plug the drive in, then take it down when I pull the drive back out. That way I can't forget it. An example from my private life would be when I turn the heater up in the bathroom to get ready for work in the morning I put a post-it with the word "heat" up in the middle of the mirror so that I remember to turn the heater back down afterwards.



Epilepsy medications have to be taken at the same times every day so I have my intake times set on my iPhone, and it reminds me every day, three times a day to take my pills. 




Now all of those tools, those aides and structures sit so deep and are so routine that they simply happen automatically, unconsciously on my part, day by day, week by, week, month by month, year by year. So when one of those really devastating days hit me, such as I wrote about yesterday, those things become of utmost importance! I cancel any appointments I can on such days and tell anyone I must interact with that "I'm not quite up to par". I might ask people to speak a little slower, or more quietly, or to repeat themselves more often. I certainly don't get anywhere near as much done and don't consciously remember hardly anything later- but my system prevails and it's all written down in my book for later reference!




Saturday, February 4, 2017

Epilepsy Updade 04 February 2017


It's been three weeks since I've written an Epilepsy update. I did write and post a story about an adventure I had back in the days when I was driving truck long-distance in the USA, desiring to add a little variety to this blog. Writing about those adventures is therapeutic for me as well. It reminds me at a time in my life when I've become so limited and suffer so much that I enjoyed decades of almost perfect health, and I used them to "grab the bull by the horns" and take it for a wild and crazy ride. 


I didn't sit in an office somewhere from 9 to 5, day after day, year after year, making phone calls and doing paperwork...


I have some wild memories to think back on- when I can think 😉


There have been many difficult days over the past three weeks and there have been a few really bad ones. The ones in between I would label as ok since they couldn't really be called good either. The important thing is that I suffered none of those emotional storms. Yes, the normal emotional turmoil that goes with a migraine or a seizure- you can't ask someone not to be emotional about those things- but there were no problems with anxiety or depression. Now I did experience moments of helplessness and despair a few times but I actually began to learn to overcome my macho "show no weakness" mentality in those moments and reach out for support, but more on that in a moment. 

The Epilepsy counseling center at the University of Würzburg told me some months ago that I should seriously consider reducing my work hours. My neurologist told me at our last appointment that I needed more peace and quiet. Then, sometime around my last entry Conny started in about reducing my work hours as well. I told her I'd compromise by asking my boss if I could work from home on Fridays. You see, I schedule all appointments with my charges from Mondays to Thursdays and reserve Fridays for what office work I do have. 

I don't think I've ever been more embarrassed in my life but I brought it up at our next team meeting. How difficult it was to admit that I'm doing so badly that I need that, especially after walking around trying to act like everything is fine all of the time for years. But do you know what? Nobody thought any less of me! I received nothing but total understanding and support! That was on a Friday and it went to the team leader the next Monday, who was just as understanding and supportive and completely in favor of the idea! She said that she would go to the director with the request that day and would get back to me. Now the thing is that up to that point I'd been dealing with people who all knew already that I have Epilepsy, but I had no idea whether or not the director knew because I'd never personally told him myself. I was nervous about what his reaction would be, and I was really glad that my team leader was going to talk to him about the subject! 

So much for the big cowboy grabbing the bull by the horns...

I was in a counseling session with one of my charges a few hours later when my work smartphone rang, and I let it go to voice mail. When I called it up later I almost had a heart attack when I heard the director's voice on my voice mail asking me to come to his office as soon as I had time...*gulp...

That was when I called to mind my past life of having
grabbed the bull by the horns. "After all you've done and all of the danger you've faced," I asked myself, "You're afraid to go talk to the boss?"

So I decided to go and get it over with, and you know what? I encountered nothing but complete understanding and support from him! He was very interested in how the illness affects me personally, the medications and their side-effects, and he let me
know that my position with the institution is definitely secure, no matter what. We discussed the organizational side of me working at home on Fridays and in the end he authorized it!

You wouldn't believe how much of a difference that makes. From 8 am to 2:30 pm every Friday I sit on my couch with my laptop on my lap and my work smartphone on the table, headset on my ear, writing reports and making calls, surrounded by peace and stillness in the warm nest of my own living room, and I get so much work done! Yesterday was the third time and it's such a blessing and an enormous help. 

And it came about because I finally overcame myself and admitted my weakness.

This is turning into a rather long post but please bear with me because I want to touch on those few especially bad days that occurred since my last Epilepsy update. The first one came on a day when I had to pick up a new prescription from my neurologist. You go to the practice and tell the pretty lady at the reception desk what you need and she tells you to take a seat. A few minutes later the doctor comes out, gives you your prescription, and wants to know how you're doing. If necessary he'll make adjustments to your medication right then and there. Now I've said before that something deep within me simply prevents me from showing how I'm really doing, how bad it really is, but on the day I'm talking about now I was doing so horribly that I simply couldn't hide it. I can't even describe how I was feeling. That whole day is only a blur in my memory anyway and I only remember a short period from the whole day. I'd just come from a meeting with one of my charges' parole officer. I don't remember a thing about the meeting itself! It's gone forever. I remember leaving that meeting with a devastating migraine raging in my head and wandering the maybe 300 meters to the neurologist's in a complete daze, experiencing light motor skills difficulties, being hit by two seizures along the way that were heavy enough that I had to stop and hold on to something. I was filled with despair and hopelessness. I felt like I simply could not make it, but struggled on anyway, in misery. When I finally got into the practice and Dr. Vollhardt came out with my prescription he took one look at me and said, "I see all I need to see! We'll talk about it at your next appointment." Somehow I got to the bus station and took the bus to the office. I can't tell you what I did the rest of that day. It's all just a blur of misery. 

On another day I had to make a house call first thing in the morning and had to catch the bus at around 8 am. I woke with a raging migraine and had several seizures while getting ready and one while walking to the bus station. I ended up missing the first bus and had to wait something like 20 minutes for the next one. I was enveloped in an epileptic daze, barely able to think, the mere act of existing costing vast amounts of energy, the thought of having to counsel the person I was about to visit thoroughly unimaginable. On top of that I was having waves of very nasty seizures that lasted 1-2 minutes a piece, each drawing me down into despair and hopelessness. Suddenly I spotted a friend from Iran- and member of the same bible study I'm in, and he came over. All at once I couldn't hold it back and I told him I just couldn't make it and even began to cry a little. He gave me a hug and then began to pray- and that in Persian. After I got on the bus I wrote a text to another person from the bible study and told him how I was doing. It helped enormously knowing that people knew what I was going through and that they cared. I was not alone! And once again I had overcome myself and admitted my weakness, and it had helped. I still can't tell you what I did for the rest of that day- except that I "worked"- because it too is shrouded in an epileptic haze. But I was able to remain much quieter inside through it all because I knew that someone knew what I was going through- and cared. 

So let me write about just one more of those especially bad days, and one that really scared me because it conjured up fears of having a grand mal seizure...

I woke up one morning with a strange, strange, strange feeling in my brain. Now that may sound funny to any non-epileptic who should happen to read my blog since my brain tends to always feel strange. But this was stranger than strange. This was really different. I immediately had to think back to those days on which I had grand mals, about how I woke up with a super strange feeling in the brain on those days. It's been a couple years since the last time so I'm not sure I'd remember exactly how it felt and besides, the character of the seizures I still have nowadays, the complex partial seizures, changes with each adjustment or change in medication so that feeling may not be exactly the same as it was back then either, who knows? Now on top of that feeling I had bouts of nausea all day too and I definitely associate nausea with grand mal seizures, since I have never had nausea at any other time. Now I didn't go overboard, falling into paralyzing fear or anything, but I did get nervous and did kind of watch out where I went and what I did- just in case. I worked all day even though I was feeling that way, even doing some appointments in town. It was a big help knowing that I always have a rescue medication and 20,-€ for a taxi in my wallet, just in case. I also wear an emergency bracelet that says "Epilepsie" on it. 

That feeling subsided-became less intense- the next day but everything- the migraines, the seizures, and that old, familiar epileptic daze have changed somewhat in their character since that day. I guess you could say they've become even more unpleasant in some way, and the sense of despair and hopelessness that accompany the seizures is much stronger. The seizures make me a lot more tired as well. So I strongly suspect that my brain actually tried to have a grand mal seizure that day, but that the medication stopped it- which is a good thing. Every time something like that happens the Epilepsy as a whole gets a little worse afterwards, and the medication normally has to be adjusted again. I'll see at my next neuro appointment this coming April...