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Saturday, December 31, 2016

Epilepsy Update 31 December 2016


Maybe my emotional storm is finally subsiding, slowly but surely, and I'm calming down a little.
I sure hope so. 

I had one complex partial seizure yesterday afternoon, and it left me with a not-too-bad migraine which stayed with me the rest of the day. But I was calmer inside, making everything easier to handle. Inner calmness is the key. The more inner balance, the easier it is to handle life with Epilepsy.

A couple of people have told me that I should just stop thinking about it all the time, stop dwelling on the illness every waking moment, that I'm only making it worse by concentrating on it. Now that's good advice! The only people who can give advice like that are people who don't have Epilepsy. Try ignoring a seizure when you're having it, and that three times a day on average. Try ignoring a migraine that lasts a week, subsides for a couple of days, then starts all over again. Try not thinking about it when suddenly having difficulty talking for a few seconds in the middle of a conversation is part of your daily life, because your brain regularly freezes up on you. Yeah, just don't dwell on it. 

How about you try Epilepsy for one month, and then we'll talk about not dwelling on it...

My seizures and migraines can no longer be completely stopped by medication, but they can be kept to a minimum and kept as weak as possible. If I can stay calm and balanced inside I can live and work with them. I've often said that it's the emotional storms that I can't handle, and I think those storms can be clearly seen in many of the entries in this blog. I'm starting to have a sneaking suspicion about those storms. I'm beginning to wonder if they aren't being caused by one of the medications I'm taking- the Lamotrigine. Depression is one of the possible side-effects of that med, and I'm at the highest possible dosage. 

The little info sheet in the box says to tell your doctor immediately if you experience any signs of depression or have any suicidal thoughts. I have indicated to him a couple of times that I have encountered "some" emotional difficulties, but as usual I played it down, just like I tend to play my condition down most of the time in front of everyone. I can't hardly imagine telling Dr. Vollhardt the full extent of how deep I fall again and again, because I'm aware of what would happen if I did. There would only be two options if he decided it was the meds: either he would give me an anti-depressant- most likely, or he would switch me from Lamotrigine to another anti-seizure medication. 

Both of those are really bad options.

They usually begin by trying an anti-depressant in such cases because that's the simplest option. Just give him another pill and hopefully he'll be happy again. 

The second option, switching from Lamotrigine to another medication, is far more difficult- and dangerous. 

Any change whatsoever in medication is difficult. Even an increase in dosage must be done slowly, over a period of time, and it is hell on earth until you've gotten used to it. You are really, really out of it, barely able to function. There is also a higher risk of grand mal seizures occurring during the change. You should get a sick slip and stay home from work during such changes, but I always go to work anyway- I don't really get anything done because you really are incapable of doing much, but at least I'm there...

I can only imagine the horror of a complete transition from one medication to another. The one must be slowly reduced- likely over a period of nine weeks in the case of my Lamotrigine, while the new medication is just as slowly introduced. All the while you're in a hell on earth, as I said, and not really able to function, and the risk of having a grand mal seizure is greatly increased during a complete change of medication than it is with a simple increase in dosage. It is highly likely that I'd have to take off work for such a change, I don't know for sure. You really are out of it, barely human.

And you know what? There is no guarantee that the new medication will even work for you, meaning that it might not suppress your seizures at all! If it should turn out to be ineffective for you then the whole thing starts from the beginning again with another medication. 

I write a lot about having my daily average of three complex partial seizures but believe me, my seizures are suppressed! They would be debilitating without the medications. I wouldn't be able to work if they weren't suppressed as they are, they would be so bad. Plus, that Lamotrigine has kept me from having any grand mal seizures for four years now. 

So I'm very, very afraid of any kind of change. 

Yet, something has got to be done about those emotional storms. Things can't go on like this. I guess I'm going to have to be honest with the doctor about them and see what he says. Those storms are just too big for me to handle by myself. 

Besides, I'm making a fool of myself in this blog by whining and moaning like a baby all the time ;-)





I'd love to read any thoughts or comments anyone might have...



Friday, December 30, 2016

Epilepsy Update 30 December 2016



Conny and I drove to Wiesbaden yesterday and picked out, and ordered, our wedding rings! We went to a woman, an artist, who makes them by hand, of mixed materials. 

I had written in my blog entry yesterday that the tension and anxiety were beginning to loosen a little, and they continued to loosen a little more the rest of the day. We're talking millimeters of progress, but believe me, every little bit helps when one is in such dire straits. They eased enough that I could work with it, not let it get to me quite as much. I was able to give my attention to Conny and converse with her as we drove to Wiesbaden, and we even took a walk along the Rhine river after we'd taken care of the rings. 

It's so strange: such a joyous occasion, yet that joy is encased in a brain that hurts, that doesn't work quite right all the time anymore, and that causes a lot of emotional chaos- as well as feelings of guilt for even thinking of doing this to her, marrying her in this condition. Wouldn't it be more humane to set her free? Yet I have encouraged her to seriously re-consider her decision a number of times, based on my illness, and she says there is no question in her mind that she's sticking with me. Amazing! I just don't get it, but there it is...

The tension and anxiety may have eased just a touch yesterday, but I had a couple of unpleasant complex partial seizures, albeit short ones. The first one happened as we were going to the car to leave for Wiesbaden. All was well for a while after that. We got off the Autobahn somewhere short of Wiesbaden and drove through a number of small villages, when something very unusual, and very unsettling happened. Something which hasn't happened in quite a long time: I had a series, or cluster as they say, of auras.


 I haven't had much trouble with auras since I began taking medication in 2012 because the meds suppress them pretty well, and none at all since starting the second medication, because taking a second medication normally kills auras altogether. Now auras can usually be seen as a positive or negative thing, depending. Auras normally serve as a warning before a complex partial or grand mal seizure. At the beginning of my Epilepsy journey I had full blown auras before both the complex partial seizures as well as the grand mals, but the auras changed after the introduction of the meds- they became much, much weaker, as well as changing in their nature somewhat. It's hard to explain. 

Epileptics who have an aura before a seizure can lay down- especially before a grand mal- in time to minimize the danger of injury when they fall- as well as getting into a safe position. Epileptics who don't have auras just suddenly fall over wherever they are, no chance of trying to get into a safe position before the seizure begins. 

My doctor's words are always at the back of my mind: my case has progressed to the point where it's no longer possible to completely stop the complex partial seizures, and it is no longer possible to rule out generalized, or grand mal seizures, and to keep my emergency pill close at hand. 

That cluster of auras yesterday caught me completely off guard- and scared me. What did it mean? Was it possible that I was about to have a grand mal seizure??? That would sure mess up my life- even more than it is messed up now. Just thinking about what it would do to my career alone sends shivers up and down my spine, because it would no longer be possible for me to work on the project that I'm working on now, working with complete self-responsibility as I do. I don't think they would fire me, but they'd likely think they would have to assign me to a different project than I'm on now, one where another person would always be near me, with an office where I wouldn't have to use any stairs, no more contact with outside companies or government offices, etc, etc, etc. They would strip me of all of my independence. 

Try and imagine what was going through my head at that moment with Conny, in that car. I've been in such a bad way for the past few weeks and hardly able to pay Conny any attention. Now I'm finally able to give her some. We're on our way to pick out our wedding rings. It's a beautiful, sunny, unusually mild day. We're driving through idyllic little German villages. Then suddenly I start having auras, that I shouldn't even be having- unless the medication isn't working right, that is. If a grand mal hits me while we're driving I could fall over onto Conny and we could have an accident. Should I tell her to stop so that I can get out of the car and sit down on the sidewalk until it's over? But that would destroy this nice time for her that we're having, after so many bad days! Am I just overdoing it? In the end I didn't say anything. In the end the auras stopped and no grand mal came. 

Here's how those auras were: we would be driving through a village when I would see something, like a building, or a fountain, etc, and would suddenly have a strange sensation of deja vu, like I'd seen that before in a dream or something. Right away I would feel a sense of dread and fear, and become sick to my stomach. At the same time the whole world would change, look different, feel different in some in-explainable way. It would ease after a second or two, and then the next one would start. That happened maybe 4-5 times. Now don't get me wrong: all of this was very weak compared to how it was before the medication. Back then those auras were so extreme that you were engulfed by panic instead of fear, and instead of dread it was pure, unadulterated horror that went to the very core of your being, just before your consciousness was sucked down into a funnel- and you later came to at the hospital. Those auras yesterday were weakened examples, maybe one hundredth power. They were very unsettling and gave me a feeling of dread, as opposed to horror and panic.

 I worked out after we got home, as usual. No light workout this time however. I used a little more weight and forced myself to work harder, to not be such a weakling!


What is the sense in all of this???






As my head begins to clear a little I realize that I think I know what's been bothering me unconsciously for the past couple of months, why I seem to have completely crashed- and especially since my vacation started: I'm just plain sick and tired of all of this! I just can't take it any more! It's simply too much for me to handle. Now don't get me wrong. I'm not suicidal in the least. I'll go on plodding along as long as I live, on all fours if necessary, but I'm sick and tired of it all. I don't feel like going anywhere or doing anything because my brain just won't work right and concentration costs so much energy, and I've lost my courage, my stamina at the moment.

What good does it do me to be on vacation when I know that I'll have to go back to the grind again soon? Back to the uncertainty of not knowing how each day is going to be when I leave in the morning? Always waiting and hoping for another good phase to come, then when one does come it lasting only a week or so, then feeling terrible again for another 2-3 weeks? People, I'm sick and tired of it! I'm sick and tired of trying to act like everything is ok in front of other people, sick and tired of not being able to live normally, sick and tired of being sick and tired all of the time. Yet what can I do?

I've comforted myself for a long, long time by saying that it would get better again, or that the Lord would heal me when I'd learned certain lessons from it. I finally realized a couple of months ago that none of that is going to happen after all. I have Epilepsy, and that is that. It will never be good again. I guess I fell into a big hole emotionally when that became clear to me. 

Anyone reading this may think I'm only feeling sorry for myself, and maybe I am, but hey, try Epilepsy for a month and then we'll talk, ok?

Imagine you're making your sandwiches for work in the morning and forget what to do with the knife for a moment or two, until it comes back to you? Imagine you hop on your bike and pedal out into morning rush hour traffic with a raging migraine, maybe even having your first seizure of the day along the way? At work you barely get your PC fired up and your colleague walks in and begins chattering incessantly before the door can even close behind her- and you've got to have a report written within an hour because you have an appointment with a very difficult client after that? And you have to stay calm, cool, and collected through it all. 

I'm just sick and tired of it...

The lady from the Epilepsy counseling says I need to think about reducing my hours at work, but I can't even consider that, at least not at this point. My team leader at work says I should consider getting a handicapped ID so that I'd be entitled to one more week of vacation per year, but how is an extra week of vacation supposed to help the day by day struggle with seizures and migraines, and above all those blasted emotional storms? Besides... getting a handicapped ID is like crossing some kind of a line for me... 



I'd appreciate any thoughts or comments anyone may have...

Thursday, December 29, 2016

Epilepsy Update 29 December 2016


Let me begin by saying that I had a seizure-free day yesterday!

The dreariness, or depression, or whatever I was feeling as I wrote my entry yesterday morning began to lift somewhat in the afternoon, and the fog lifted from my brain just a little as well. I took a spin on my bike and made a couple of repairs in the apartment, and then worked out in the evening. Conny spent an hour or so with me in the evening and I was able to give her my attention. I finally felt just a tiny bit more strength in my spirit. 

It became clear to me that I've yet again been a prisoner of that tension and anxiety for several weeks now. That tension and anxiety that I, and so many other epileptics complain about so often. Yet I don't understand that at all. I can look back on any number of blog entries I've written in the last couple of months about my attempts to identify when that condition, that downward part of the up and down cycle, is trying to come upon me again, and to stop it before it can get started. I thought that I was learning to cope with it and hold out against it! I was beginning each day by drinking my first cup of coffee in bed, in stillness and solitude and prayer, and facing each day with a certain composure as a result. The storms still blew against me, sometimes stronger and sometimes weaker, but I faced them with a certain inner tranquility. That gave my soul a certain hope and strength to face who knows how many years of life I have left, burdened with this illness. I thought to myself, "I can handle it if I can maintain this strength in my spirit."

Then suddenly I begin to realize, yesterday, that I was defeated by that terrible condition at some point after writing all of those entries, and didn't even realize it! When did it overtake me? I have no idea...

That's the way it always is. The fog begins to lift one day and I realize that I've been stuck in that condition for days, or weeks, or I don't know how long. Tied up in knots inside, sad, don't want to see or talk to anyone. I don't realize I'm in that condition while I'm in that condition. I do realize that something is terribly wrong, but not exactly what because I'm in a fog, nerves on end, and my thoughts are completely scattered. It is a condition of complete weakness and inner defeat. My spirit becomes powerless. I'm helpless against that condition. I even cry out to God for help when I'm so tied up in knots like that, but it always seems like he's a million miles away at those times. I plod on, confused, always reacting on impulse, never acting, totally unsure of what to do, everything seemingly threatening. I keep on going, and keep on going, and keep on going, just hoping for the next good phase to start.

I sometimes wonder how I seem to other people when I'm in that condition? I can't seem normal to them. Do I seem unfriendly, unapproachable, or even stand-offisch, like I want to keep them at a distance? I suppose it's possible, but what
can I do? It's like there's a buffer between me and the world when I'm bound by that tension, brain wrapped in that confusion, and I find myself embarrassed by it and trying to hide it from everyone, trying to act normal. It may well be that I try and keep people at a distance at those times, fearing that my condition will be noticed if I let anyone too near. It's almost impossible for me to admit weakness to anyone, to admit that I have an illness that debilitates me, likely thinking that others will think less of me for it, see me as only half a man or something. That, in and of itself, is likely a sign that I see myself that way. 

I've completely pulled back into myself this last round. I haven't even gone to church, or to bible study for weeks, and those are the only free-time activities I have left in my life, those people the only human contacts I have outside of work- besides family, of course. As a matter of fact I've barely left the apartment since my vacation began. I tell myself over and over again that I've got to get going again, but haven't yet found the courage, or strength, or whatever to actually do it. 

So how can I avoid that condition if I don't even see it coming? Having two or three short, light seizures per day is nothing! I can live with those. It's that terrible condition that takes over without me even knowing that it's taken over that is so devastating. This "waking up" every so often to find out that I've "been in another world" for the last few weeks is unbearable. What are the signs that it's coming so that I can do something about it before it can take hold? Why don't I get some help from the Lord with that part of it? 

I don't have anyone to talk to about any of this, and sometimes I really wish I did. Yet at the same time I know it wouldn't do any good anyway because the years, and the roads I've traveled have made a man out of me who has major difficulties opening up to other people. Not only that, but what's inside of me is simply too much to impose on anyone. There is too much volume, and too much emotional energy behind it all. I fear it would sweep a person away if I were ever to let it all out. I knew someone many years ago who I could completely open up to. Completely and totally. 100%. For some reason I wasn't afraid of her thinking less of me when I felt weak. She took me in her arms and held me when I felt weak, and I had the freedom to let the sadness out and the tears flow. I always felt better afterwards. 

But that was many years and miles and lives ago...




Some time ago I thought it might be good to talk to other Epileptics. They would be able to understand exactly what I go through each and every day, since they themselves go through the same thing. There is an Epilepsy self-help group here in Aschaffenburg and I have gone to a couple of their meetings, but I didn't really feel comfortable there (I may have written about them before, I don't remember). First of all, there are no active Christians in the group, which makes confiding in them impossible for me. Secondly, they're basically nothing but a club where you have to pay dues and take part in constant projects and luncheons, and all kinds of other things which take up huge amounts of your free-time, which is exactly what I do not need.  All of the people in that group are retired and have all the time in the world to do stuff like that, but I work full time.  

So to wrap it all up, my brain does seem a little clearer and my heart just a touch stronger today. Conny and I are driving to Wiesbaden to pick out our wedding rings, and I hope my condition will stay this way, or get even better. I hope I'll have lots of capacity to listen to her and converse with her. The sun is shining and the occasion is supposed to be a happy one. It won't be nice for Conny if I'm all depressed and drag her down. 




Wednesday, December 28, 2016

Epilepsy Update 28 December 2016

As much as I hate to admit it, I've been battling against sadness, or depression, or whatever, since the day after Christmas. 

As I sit here right now, trying to formulate thoughts into words, my brain is revolting. I see scenes in my mind that I'd like to write about, and desire to describe how they connect to what I'm feeling right now. But it seems so hard to do! I see it in my mind, barely begin to grasp the meaning, and it slips away again before I can get hold of it. It's all swirling around up there in my head, without any structure or pattern. It would be so easy to give in to depression at this moment, to wonder what the purpose of all of this is, to a life lived in an epileptic daze, never knowing when or where the next seizure is going to hit- or when a really bad one may come, to a life where even the normal, everyday tasks and activities cost 10-1000 times the normal amount of energy, depending on your condition on any given day. As the picture above says, all seems dull and pointless. Yet that's nothing new. That feeling comes over and over again, and it always goes away again, sooner or later. When it's there I try and be as quiet and still as I can and wait until it goes away again. 

One of my daughters was out of the country over Christmas this year, but the other one spent Christmas day with Conny and I here in Aschaffenburg, and that was beautiful. My brain was somewhere in the middle between bad and good, and I just tried to take it nice and easy, not become sensory overloaded. My daughter is used to my condition and can deal with it pretty well. That daze was a little worse the next morning, the 26th, when she left, and it felt bad not being able to think right, not really able to feel, confused, not able to do anything about it. I wanted to say some kind of profound words to express the love I feel for her, how proud I am of her, etc, but there was just no way I could formulate any profound words.

The epileptic daze stayed stronger than the day before that whole day, like my brain was immersed in oil or something, or stuck in a fog. I wanted to go right back to bed after my daughter left in the morning, let down the shades, and stay there for the rest of the day, but I didn't. I puttered around the apartment instead. 


Conny and I went out to eat in the evening and I scraped all of my energy together, every ounce of concentration and will, because I wanted to be there for her and be present and able to converse with her. She really needs that. It did work to a certain extent, but part of what she talked about was very difficult for me to take. She talked about how important talking is to her, having conversations, and especially about how she feels she generally has too few opportunities in her life to talk about herself and the difficulties she goes through in her social life and at work. Now listen to me: Every time I have any kind of capacity at all I give her everything I have, right down to my last spark of energy. We're generally talking about evenings after work and on weekends, of course. I normally listen to her just about every evening when I'm in a good phase, and at least a couple of evenings a week during bad phases. But it's not enough for her. That doesn't feel good. It makes me feel like I can't take proper care of my woman. 

So my brain was even worse yesterday, the 27th. What a nasty, nasty feeling. You don't feel like doing anything. Just nothing at all. Yet I got dressed and walked into town anyway. My girls had given me an iPhone 5 for Christmas and I wanted to buy a bumper for it, so I walked to the mall to get one. What I saw when I got there should have made me turn around and go back home immediately, but it didn't- I almost never do what I should do. I could swear that all 70,000 residents of Aschaffenburg were at the mall! I've written before that crowds are one of my seizure triggers- sensory overload, I guess. I decided I really wanted that bumper though and I wanted it now and would try and get in and out really fast, but that proved difficult. Now I am by nature a peaceable man who wouldn't hurt a fly- except in defense of my family or myself- but that crowd set me so on edge, what with people blocking everything and stopping right in front of me without warning, and just generally jamming everything up, that I was tempted to go into TaeKwonDo mode more than once and teach people to stay out of the way. Listen, there I am, for example, standing in front of the iPhone accessories at Media Markt, brain in an epileptic daze, trying to figure out which bumpers are for the iPhone 5, and which of the million varieties I want, when three people step right in front of me, completely blocking my view, and stand there looking for bumpers themselves! I had to fight the anger that came welling up within me- as well as the knowledge that a spinning roundhouse kick would take all three of them out in one fell swoop...;-)




Thoughts like that are only fleeting, of course, and what I did do was to kind of carefully shoulder between two of them and grab the bumper I'd been looking at. One of them looked at me a little funny, but I ignored him. I paid for my bumper and got back home as quickly as I could. Once there I put on my training gloves and pumped some iron...

That evening Conny wanted to talk, and she did, for two hours...

I'm feeling sad right now and getting all of this off my chest, yes, but I don't think I'm feeling sorry for myself this time. These are simple facts of life. 

My life with Epilepsy...

Friday, December 23, 2016

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...

Wednesday, December 21, 2016

Epilepsy Update 21 December 2016



I wrote yesterday about it being almost impossible for most people to just be still, that people simply have to talk. I also wrote about wanting to be alone so much. The two are connected, of course. 

It seems like the key to keeping the constant emotional attacks under control, as well as coping with the seizures and migraines, is maintaining as much inner balance as possible. And the key to that, at least for me, is large amounts of stillness. It's all about staying calm in the storm, letting the winds blow and the lighting flash and the thunder roar, while remaining calm and unruffled and unimpressed by it all. I find it extremely difficult to maintain that inner calm when someone is talking to me, and since it's difficult for most people to just be still I find myself wanting to be alone when I'm not doing well. 

I don't think everyone feels the same as I do in that regard. In the various Epilepsy forums and chats, as well as in daily life, I see almost exclusively people who seemingly need to be surrounded by others at all times, seem to love the conversations, even need them.

I'm not always "under attack", don't always have a migraine, but it is all too frequent, I must admit. Yet what should I do? Can I flip a switch and turn it off? Hardly! It's there, part of my life, and it must be dealt with. It's a force to be reckoned with, accepted and coped with. Since I know nobody far and wide who is able to just be still with me, I'll have to be still alone when I need stillness. 

I can handle the conversation, the interaction, during good phases, no problem. At those times I can listen to my soon-to-be all evening, giving her my full attention, for example, as she talks about how rough her work day was, or whatever else may be on her mind that particular day. I sometimes wonder, however, if I even have the right to impose myself on her in my condition? She actually needs someone who will listen to her just about every evening. As I said that's no problem in good phases, but it's a real struggle in bad ones and it creates a conflict within me: I really want to be there for her and find myself trying even when I'm doing badly, using up energy I actually need to keep myself from falling into the despair and hopelessness that Epilepsy sometimes brings with it. I might have struggled through work all day with a migraine and having had 2-3 seizures. Then after she gets home from work and starts letting off steam about her day I fight with all of my might to concentrate on what she's saying, but the migraine rages and my brain simply refuses to cooperate! I hear her words, but my brain cannot process them no matter what I do. Their meaning just slips on by me. Sometimes a light seizure or two might even be triggered by it all. I find myself increasingly sinking into chaos and confusion. Wanting, trying, unable. 

It's terrible not being able to be there for your partner when she needs you! Conny can get pretty frustrated by it too sometimes, after all, she's only human, but that only lasts a short time. It doesn't take long and she's got me in her arms, telling me how brave I am to go to work every day despite the Epilepsy, providing for us, doing my best to be there for her, etc. 

Then come the good phases, where my head is clear, the days are seizure free, where I can listen to her and interact. Now that feels good!


Tuesday, December 20, 2016

Epilepsy Update 20 December 2016


It is good to be on vacation.

I had considered it possible that there would be an increased danger of having one or more serious seizures after the release from the tension of the last months of working in such an exhausted state, but so far so good. I've been taking it really easy and there's been very little epileptic activity since my vacation began. I've slept in a little bit every morning. I've done a few things around the apartment, nice and easy and relaxed. I've worked out every day, low weight and high reps, slowly and fluidly. 

There is a feeling of sadness on me however, and I mostly feel like being alone, not talking to anyone, not seeing anyone. That's been going on since yesterday. My thoughts drift to the past between sets as I'm  working out, for example, and I think about things that happened to me as a teenager, or mistakes I've made in the past, people I've hurt, and I just want to cry. Yes, the man who once lived a wild, hard life, who once braved 5000 square miles of untouched wilderness all alone, has become so weak that he just wants to cry like a baby sometimes. 

I don't know if it's ok to let that sadness be for a while. I don't know if it's just the normal cycle of life, that people are simply sad sometimes and need to cry it out, then go on, or if this is either the medication, or the Epilepsy messing with my mind, and letting it out will push me over a cliff and into the depths of something that will hold me captive for the next who knows how long. There is no handbook. There is nobody you can ask. 

I'm experiencing a lot of temptation to feel sorry for myself as well at the moment, for my condition, all the limitations, and for being alone with it all emotionally. Part of me wants to let down the shades and neither see nor hear nor talk to anyone, yet I do admit that a tiny part of me does wish once in a while that someone would take me in their arms and just hold me for a while- and understand.

The solution? Stay calm and cool. Go slow and easy. Don't let it get to you. Walk into town and take care of a few things. Do some chores around the apartment. And most importantly, work out...



Sunday, December 18, 2016

Epilepsy Update 18 December 2016

How to describe the past week...?

I'm not sure, it's almost as if I wasn't really there...





It was like being lost in a fog...





My vacation was supposed to have begun last Monday, the 12th of December, but I had some important things at work, very difficult and complicated things, that simply had to be taken care of beforehand, and postponed it one week. 


My attitude upon waking before work last Monday morning was that I was going to calmly and patiently work through all of the appointments this week, day by day, dealing with my condition on a daily basis, whatever it might be. My spirit was exhausted but I know from my military training that you just stay calm and put one foot in front of the other, and keep going when the going gets tough. 


There was relatively little migraine activity last week. Instead I had a lot of seizures- 6-8 of them per day, and they were longer and stronger than usual, up to 5 minutes each. On top of that the struggle with anxiety and depression was worse than usual. That part of it climaxed Friday morning. I actually thought everything was going according to plan after waking, sitting in bed with my first cup of coffee and getting mentally set for the day. I was calm and ready when I did finally throw back the covers and get up to get ready for work. I had made it through the whole week and had just this one last day, then three glorious weeks of vacation! 



Shave, take a shower, brush my teeth, pack my backpack, make a couple of sandwiches...

While I was making my sandwiches I was suddenly hit by an emotional tsunami. It came from out of nowhere, completely unexpected and without any warning whatsoever. It was too huge, too devastating, for me to be able to adequately describe it. Maybe a couple of terms: utter hopelessness, complete loneliness, despair, a feeling of senselessness, devastating shame at my weakness, and a million other things. A gaping black hole wanting to swallow me in my entirety. Hot tears welling up from somewhere deep within me. My entire being just screamed to ride out into the desert all alone and never, ever come back again. 


I began quietly talking to myself. "Don't cry", I consoled, "This isn't real". I continued to tell myself to stay calm and not to cry as I finished getting ready for work, the storm raging around me all the while. 

Mornings are a rough time for a lot of people, and my soon-to-be is no exception. I called goodbye up the stairs as I was leaving and she came down, but she wasn't quite awake yet and snapped at me for some reason. Now she couldn't know what I was going through because I tend to keep my cards close to my chest, and besides, is everyone supposed to walk on eggshells around me all the time? All of my strength, all of my concentration, was focused solely on staying calm and not letting that storm take me over. I didn't even respond to her snapping at me. I couldn't afford to. If I were to divert my attention from staying calm in the face of that massive storm for even a fraction of a second, I would fall into that deep, black chasm...


It was on the way to work that the first seizure of the day hit me, and it was a bad one. Now the bike path I take to work is pretty narrow

most of the way and it runs right next to the road. Cars race by in an insane rush to get to work on time and I suddenly couldn't process it all and couldn't control my arms and legs right, and had to stop and get off my bike. I finally made it to work though, somehow, it's all a blur, and got safely behind my desk.

I made it through the day, and believe it or not I managed to hold out against that emotional storm. I had several seizures throughout the day and when they hit I was successful in just quieting down and waiting until they were over, then going on with whatever I was doing. Quitting time was 2:30 pm, and the closer it got the more I felt my spirits lift, knowing that it would be the start of three weeks of vacation.


My youngest daughter lives a little over an hour from here and she moved into a new apartment this weekend. She told me last week that she had enough help and that I didn't need to come. My first thought was that she was worried about me and the Epilepsy, and might only be saying she had enough help for that reason. I'll never know because if it were true she'd certainly never admit it- to protect my macho feelings. But it's one more reminder of the fact that I can no longer live a normal life, no longer commit to being anywhere on any given day, not knowing how I'll be doing on that day. That hurts. That's embarrassing for a man who has been strong all of his life. 

Who would have thought back on that late January day in 2008, when I had that first grand mal seizure, that I would never be free again, that Epilepsy would affect each and every day of my life from that day on? That small town, country hick neurologist I went to back then, the only one in the town I lived in at the time, told me it was all in my head and had been a one time thing, and I readily believed her. She had based that judgement on a few weekly EEGs that had come up clean over 3 months. A few years and a number of seizures later they found the seizure focus in my brain- it lies too deep in my brain to be easily seen on an EEG. I'd kind of like to go back there and tell her how much her diagnosis was worth! It doesn't matter though because she went into retirement not too long after that. Good riddance. 








Sunday, December 11, 2016

Epilepsy Update 11 December 2016


Migraines: one of the most common accompanying phenomenon of Epilepsy...

There's a lot I'd like to write/report but it seems very difficult to organize and formulate. I guess I'll just start and see what happens...





I was supposed to start my Christmas/New Year's vacation tomorrow, and I feel like I really need it, but I had to postpone it a week because there are a few things at work that simply have to be taken care of beforehand. That means I have to make it through this coming week somehow. And I have some very difficult, complicated appointments and tasks, and will have to take care of those in a pretty exhausted state. As always I will simply keep going on some kind of reserve power, chugging along one step at a time, trying to stay as calm and as focused as possible. 



My last update was the 3rd of December and a migraine began that evening, and stayed with me the whole week. As a matter of fact it's still there now as I write this, albeit fairly weak. With the exception of Tuesday the migraine was maybe only 1/4 to 1/3 power, but it remained steadily every waking moment of each and every day, no respite. It flared up and grew worse on Tuesday, then went back down again. That really got on my nerves and sapped my strength. It wasn't completely debilitating, but it just wouldn't stop. It was always there in the background, a constant companion. Part of me was consistently occupied only with staying calm inside and going slow enough that my brain, numbed as it was by the migraine, could keep up. Sadness and anxiety were always at the door, waiting to pounce on me if I were to let my guard down for even a moment. Another danger is that I can easily become impatient, or even short-tempered with other people in that state, and I currently have a couple of extremely difficult clients to deal with, people who are willfully obstructive at every turn. I could really flip out sometimes and verbally tear them to pieces if I didn't keep myself under absolute control and stay absolutely professional. 




Can you imagine how much energy that requires...???





I did manage to stay calm and professional, and go slow all week, so maybe I'm finally learning. 

I had the usual array of CPS (complex partial seizures) last week, 2-3 per day, but almost exclusively light ones- from 30 seconds to 1-2 minutes. No problem. A little longer and just a touch heavier once or twice, but still very manageable. As long as they stay short and light I can live with them.

I had a check-up at the neurologist's last Thursday, and I made the EEG machine dance. Dr. Vollhardt said to start taking Magnesium in the evening before going to bed, to eat small meals every couple hours throughout the day, and to make sure to drink plenty of water. He also said I need more rest and relaxation in my free time. 

So I ask myself how in the world I am supposed to get more R&R in my free time when I have already given up almost all of my free time activities? The only free time activities I haven't yet given up are church on Sundays and bible study on Wednesdays- and I haven't even gone to either of them for several weeks now. I have stayed home and ensconced myself in stillness every evening, and every weekend, for the past two months or so. Maybe that's why I'm able to stay calm and go slow during the migraines? 


Church is normally a good thing, of course. The problem is that crowds can trigger either seizures or migraines, or both, and there are about 150 people at church each Sunday. That's a crowd. No problem in a really good phase. A problem in a bad, or even a questionable phase. All of those people, sounds, sights, etc. Then, the moment the service ends people come up to me, usually several of them, wanting to talk. They invariably ask me, perfunctorily, how I'm doing, then begin talking about their problems. It has been that way as long as I've lived and was never a problem before, but it is now because it's simply too much for me. I used to have unlimited energy and capacity to help others, but the Epilepsy has devastated that capacity. It's my job to listen to people's problems Monday through Friday at work and help them solve them, and that's what pays the rent. But I go home from work spent and exhausted from it each and every day, nothing left. It costs all I've got.


I've been in the counseling business for years here in this town and the chances of happening to meet an ex-client- or even a current one for that matter- while out and about town are very high. When that happens they begin telling me about their problems right away, and they will continue until I stop them and say I have to get to the store before they close, or some other excuse to get away. In other words work simply goes on after work if I show my face in public. Yet I just don't have the energy for that anymore, even though it makes me feel guilty not to be there for them. I have to learn to re-charge my own batteries so that I can take care of my clients at work- not to mention my soon-to-be, Conny, who herself needs an ear quite often. 



So why do I feel so guilty...???

When you come right down to it, it's self preservation. While I'm counseling others in my free time it's draining my last remaining reserves of energy. They go away strengthened and I go away even more weakened, knowing that I'll have to go to work the next day in an even more weakened state because I didn't take care of myself by withdrawing and re-charging. I need to understand that withdrawing is not egotistical, it's self-preservation! No one else is going to take care of me emotionally. I'm all I've got and up till now I haven't even been able to depend on my own self! It's time to ditch the false guilt trip and take care of myself. Otherwise I'm not going to be able to continue working until retirement age. I'll collapse before then. 


I know it shouldn't, but those well-meaning people that don't understand Epilepsy and always want to get you involved in things really get on my nerves! I know they only want to help, but I could still flip out when the seizures are worse that usual or I've got a migraine on a particular day. Like my colleague at work the other day trying to convince me to join her friend's band. I told her that I can no longer commit to being anywhere at any certain time, because I never know how I'll be doing on any certain day in the future. She didn't get it. "But it's for fun!", she said. I told her that it was no longer possible for me, even if it was for just for fun. She still didn't get it. I told her I have to have quiet and stillness every possible moment outside of work, but all she could do was to repeat, with a confused look on her face, "But it's for fun!" I reminded myself that it's just not possible for someone who doesn't have Epilepsy to understand, swallowed my aggravation, and patiently told her that I simply can't do it. She turned away, slightly offended. I sat there feeling guilty...



I think I need to stop there. I find it kind of difficult to formulate my thoughts, and besides, I feel I'm in danger of delving into more and more negativity and sliding into a "What sense does it all make?"

attitude. That wouldn't be good. Once I open that door...