Sports and Body Awareness

I read somewhere that sports are good for epileptics and I can confirm that from my own experience. I think I'd waste away and die without it.

I was anything but athletic as a kid. 
I hated sports!

I was tall and skinny, clumsy and uncoordinated. I had very little connection to my own body. I was physically very weak. I was actually very ashamed of my body.

The US Army changed all that. It hurt at first but they made me physically fit. Very physically fit. Like many former US soldiers I stayed that way too after my service was over. It wasn't possible to do sports during the decade and a half I drove that 18-wheeler but I made sure to regularly unload my truck myself, for example, in order to keep my body fit. I turned to sports after I stopped driving that big truck. 

I've engaged in a number of sports over the years. Competitive roller-blading for  several years, for example. I stopped that when I moved away from the team I was a member of. I also did TaeKwonDo at a martial arts school up until last year, but finally gave that up because it was simply too extreme and the Epilepsy wouldn't allow it anymore. Martial arts is a sport where you have to follow the pace set by a coach- and that pace is pretty extreme. You can't go slow when you're in a bad phase. You have to keep up no matter how you're doing.  It really broke my heart to stop. I still practice by myself, at home and at my own pace but it's not the same. I can maintain my level but I can't advance. 

I mentioned before that I have a good cross-bike. Not only is that my main transportation but also a piece of sports equipment. My work requires a lot of outside appointments and I go to all of them on my bike- sometimes 10-15 Km per day. I do long-distance trips in my free-time- as much as my condition at the time allows. 

But one sport has been with me for over a decade and a half. My main sport, and that is weight-lifting.

I have my very own gym at home and it's very well equipped. I started out years ago with two bar bells and 8 little weight plates. Those weights soon weren't enough so I bought a couple more, then a couple more, etc. After that came a curl bar, etc. One piece after another over the years until I've got a complete gym today. That photo in the upper lift is not my gym, but it's an example of a home gym. I work out 5-6 days per week.

For me weight lifting has many advantages. One of the pleasant side-effects is of course that a physically fit body looks good. It doesn't hurt when women look at you appreciatively wherever you go, and maybe even flirt with you a little once in a while. But while that is fun that's not what it's all about.  

During extremely bad Epilepsy phases, phases so bad that it's not possible to work out for a longer period of time (such phases are rare, thank goodness)- like maybe 2 weeks, my energy level drops dramatically and my mood sinks incredibly. As soon as it becomes possible to work out again it only takes one workout for me to notice a difference again. My energy level is back to normal again after only 2-3 workouts=2-3 days. 

Weight lifting is a sport that lets you have complete control over your pace and intensity. It's extremely rare for a phase to be so bad that working out is not possible at all. Even when the seizures are pretty heavy or the migraine bad you can still work out with only a little bit of weight (close the shades so the neighbors don't see you working out like a girl *LOL). If necessary only do two sets of each exercise and only work out for half an hour. It's possible to do something in some form 99% of the time. Having my own gym at home means I don't have to get dressed and go out to a gym either. Now maybe everyone can't set up their own gym at home but surely everyone can buy themselves inexpensive barbells. You can work out your whole body with two barbells, do it at whatever pace works on a particular day, and whichever exercises work for that day. I always feel better after a workout. 

Another advantage is body feeling. Sports in general give you a good connection to your body, but especially weight lifting in my opinion. You learn to concentrate on the muscle you are training during each exercise and the result is that you feel that in every day life as well. You can't lift a cup of coffee to your mouth without feeling the muscles working that are lifting that cup. It feels good to feel your body that way. When you walk you feel your feet on the ground. I could go on...

I had that for years but the Epilepsy has done a lot to mess that connection up, unfortunately. The worse the phase, the worse my connection to my body. 

Many people, especially women, may not understand and have a negative reaction when they read this, but being nude can help with that- in an appropriate setting like at home or at the sauna of course. You can certainly feel your body a lot more in the nude. 

Another thing that helps me is going barefoot. Feeling the ground with my feet strengthens my connection to my body and is something that can be done everywhere-provided it's warm enough. I normally take my shoes off just as soon as the weather gets warm enough in the spring and don't put them back on until I'm forced to by the cold in the fall. I wear flip-flops at work and slip them off every chance I get as well. 

Working out strengthens the connection to the body enormously! Weight lifting isn't just a matter of throwing a couple of weight plates on a bar, lifting it a couple of times, drinking a protein shake, taking a shower, then bragging about what an animal you are on Facebook. There's a lot more to it than that. There are many things that are important in order to avoid injuries, for example, or to maximize the effect of the training. One is posture; if your posture isn't right you can badly injure yourself. If you don't perform the exercises smoothly and fluidly you can wreck your joints. If you don't get your mind involved other muscles will help the one you're trying to work out and it won't be effectively trained. I'm lucky in the fact that I worked out for so many years before I got Epilepsy that my body automatically has the right posture and performs all of the exercises properly, so that I don't have to concentrate on trying to learn all of that while suffering from a migraine, for example. 

So when I work out I do it in subdued lighting, with or without music- depending on mood or condition. I get my soul quiet and still. I look at all of my equipment and remind myself how lucky I am that I am able to continue to work and afford all of this despite having Epilepsy- there are many worse off than I. I put my training gloves on slowly, almost in a celebratory way, looking forward to what's coming. 

I pay attention to my equipment as I take hold of whatever I'm using, concentrating on how it feels. I consciously apply power slowly to pick it up and bring it into position. Then I execute the exercise slowly, fluidly, with utter control and as much concentration as I can muster. I try and shut everything else out. I go into myself and try and find the muscle I'm working on and concentrate on it. I make every move calmly, unhurried, and with absolute body control. 

I always walk away from a workout with the connection to my body strengthened to some degree. Sometimes more, sometimes less, depending on how bad the Epilepsy is on a particular day. 

A nice, hot bath with aromatic oil right after a workout is a small slice of heaven on earth, by the way...


I would love to hear about anyone else's experiences with Epilepsy and sports. Please comment.

Epilepsy Update 26 November 2016

Just imagine for a moment that it's Sunday morning and you've been planning a picnic all week. The whole week has been sunny and warm and you've really been looking forward to it with all of your heart. 

Then you wake up to overcast skies and steady rain...

You can't change the weather. No amount of positive thinking is going to make the rain stop and the clouds roll away and the sun come out. You can sit down and cry. You can stand up and scream. Or you can simply accept the fact that there isn't going to be a picnic today and go to plan B. Maybe spread a blanket out on the living room floor and have a picnic there or something. They used to say, "Roll with the punches" back in my day. 

That's how it is with Epilepsy... 

You don't know what the weather is going to be like until you wake up in the morning. And you can't change it, whatever it is. All you can do is accept it and deal with it accordingly. 

Now that analogy doesn't cover it perfectly because there are things an epileptic can do, and should do, that may influence his or her situation to an extent, however small- either positively or negatively, depending. 

• Take your medicine at the same time every day (and don't forget them of course)
• Keep a regular rhythm as much as possible
• Avoid excess stress
• Avoid your triggers
• Get enough sleep 
• Find out what does you good and do it
• Find out what doesn't do you good and don't do it

The things I'm writing are pretty general and I'd like to claim that they pretty much apply to the majority of epileptics. The fact is however, and I believe I mentioned it in my very first entry, that every Epilepsy is like a fingerprint and no two experiences are exactly the same. There are varying degrees and intensities and sets of symptoms and problems, etc. There are much lighter cases than mine, and much, much worse cases. 

So now on to the past week. It was kind of middle of the road, I guess. I had 3-4 seizures every day but they were all rather light and each lasted only 1-3 minutes. I can live with short, light seizures. I had a migraine the whole week too, but Thursday was the only day that it could be called intense- and even then it could have been much worse. Other than that it was like a steady thing in the background the whole time. That whole thing, the whole week, may have been worse if my attitude had been different, I don't know. 

You see, I was able to stay calm the whole week. I was able to simply accept the seizures, accept the migraine, like the person who wakes up on Sunday morning and can't have their picnic because it's raining. 

I don't normally have to leave for work until 7:30 am and need an hour to get ready. Still, I set my alarm clock for 5:45 am. I hit the snooze button at least once. After that I get my first cup of coffee and go back to bed where I just sit there in the dark, nursing that coffee and doing my utmost to simply be still for like half an hour. Utterly still. It worked fairly well last week. That alone seems to set the tone for the entire day for me. I get out of bed at 6:30 and try and maintain that inner stillness as I get ready for work. Slow and easy, nice and quiet. On at least one day last week the first seizure hit within a half hour after waking- while making my sandwiches for work. I simply stopped and waited in peace, letting it happen, knowing that seizures are simply part of my life and that it could be much, much worse. The seizure passed after 2-3 minutes and I went on making my sandwiches.  I did that every time I had a seizure last week. I met the migraine with that same attitude; that's my life and it can't be changed. Be calm and accept it. Keep going. Don't fight it. 

As I look back on last week I can't say that it was thoroughly unpleasant, even though there isn't one single smiling smiley- meaning seizure and migraine free- in my seizure log. It was calm. It was peaceful. I went slow and steady. My work was productive and successful because of it, bringing satisfaction. 

I wonder if the seizures themselves would have been stronger if I hadn't been as balanced inside? I wonder if the migraine would have been worse as well? 

I'd love to read any comments you might have...

Epilepsy Update 20 November 2016

Yesterday I wrote about the horrible field trip to Stuttgart I went on for work at the beginning of November, and I'd like to tell about how the story continued after that. I explained how my fiance, Conny, picked me up upon my return from that trip, how I threw my bag in the car, she drove me home, how I tore my clothes off and jumped into bed and slept for a few hours. Conny took good care of me after I woke up later that evening. She made dinner and brought it to me as I sat on the couch in the living room watching some kind of brainless film on YouTube, and she generally pampered me for the rest of the evening. That was Friday and I remained in the apartment the entire weekend, except for one short walk in the forest on Sunday. What I did over the weekend was very therapeutic; Conny is very sporty and athletic, as am I myself, and her main sport is biking. The problem is that she can't bike in the sense of sport over the winter due to the weather. So we bought a stand some time ago that a bike can be mounted on, making it possible to ride it in the apartment. On top of that I had gotten an old, used bike for her especially for that purpose.

 Well, I spent that weekend stripping that bike down to the basics, oiling everything, putting new wheels on it, putting a new chain on it, and basically renewing the whole thing for her. Then I mounted it on that stand and let her have a go at it. The way her face beamed the first time she got up on that thing and started peddling made my heart soar like an eagle! My eyes got moist and I thought, "It's good to be alive, after all." She also said one of those female things when she thanked me that felt good even though I knew it was only one of those female things designed to make a man feel good. She said, "Thank you so much! I just could not have done that without you! I would not have been able to get all of those bolts off and stuff..."

Now, the whole time I was working on that bike I was alone and I had no music playing, no sound. Absolute stillness. I consciously worked on quieting my heart. I told myself that the anxiety that was gripping me simply goes along with Epilepsy and is only an illusion, that there is no realistic reason for it. Everything is ok. I have time. This is free-time. I have all day. I have nowhere I must go, nothing I must do. I took a good look at my life. In truth I have only one problem in my life, and that is the Epilepsy. Other than that I literally do not have even one single problem. I have a wonderful woman who I will be marrying in June, two adult children who both have university degrees and are doing well in life. I have a dream job and make enough money to provide for all of my needs, so that I literally want for nothing at all. I have no debts. I have my own little weight gym here at home and work out every day. 

 I may not have a car but I have a very good, very expensive cross bike. 

And as I worked on Conny's bike I was pleased with the fact that I have every tool that a man could wish for, and they felt good in my hands as I lovingly prepared that bike for the woman I love. I have everything! 

The one and only problem I have in life is Epilepsy. 

As is normal with Epilepsy I kept experiencing black-outs over and over again as I was working on that bike. I would have a wrench in my hand and suddenly forget what I wanted to do with it. In the course of working I began to be able to just become quiet and let that happen instead of fighting it. I waited a moment and then it came back to me. Then I continued with whatever I was doing. I became more and more relaxed as I went on and my mood began to lift somewhat. 

I continued to recover quickly from that field trip and there followed eight days in which I only had one single seizure, and that was short and light. My mood was pretty good and my head was quite clear. My body felt young and I had a lot of energy. I zipped around town on my bike from appointment to appointment and my work was very successful. It didn't even bother me that it was rainy for most of the week- once again, my dream job provides me with enough money that I am able to afford the highest quality gore-tex biking rain jacket. 



It couldn't stay that way, of course...

Sure enough that good phase began to crumble around the edges after those eight good days, but I had been expecting it and hoped I was prepared this time. I knew that my emotions would try and crash and that anxiety would try and take my soul over- along with the seizures and migraines. I en-devoured to remain calm inside and ride it out, to accept it and not fight it. Indeed, my emotions did try and crash over and over again in the course of the next week. Indeed, anxiety did try and infuse me and take over my soul repeatedly. Each time they did I consciously reminded myself that it was all an illusion. I reminded myself that this was only another flare-up starting and that it would pass. I reminded myself over and over again that I needed to let it happen, go slow and take it easy. Control my environment as much as I can, avoid what I can't where possible, and cope with what I can't as best I can. 

That flare-up, or bad phase, began last weekend and went on throughout all of last week. I had three seizures on Monday which left me with a migraine that lasted the rest of the week, complete with the fried brain and all of the trimmings. I had a couple more minor seizures during the week as well. I still had to work all day, every day throughout the week anyway, but as I said I somehow managed to keep my emotions and the anxiety under control and to accept the seizures and the migraine. Another thing I did was to cancel all free-time activities and stay home every evening, relaxing and enjoying peace and quiet. Working out in my home gym, going out to eat with Conny, or watching some brainless film on YouTube.

The result was that the bad phase went by a lot easier. Work went by a lot easier. Work was a lot more productive. I was able to control my environment much better because I wasn't consumed by depression or paralyzed by anxiety. I was aware of the fact when I was beginning to be in danger of sensory overload and able to react immediately to stop it- even if it meant telling a colleague that they needed to stop talking to me for a moment (and simply walking away if they didn't!), or leaving the office to take a short walk around the block, just to name a couple of examples. I scheduled less appointments and left more time between the ones I did make. I spoke slower and rode my bike slower and walked slower and just did everything I did slower. When someone spoke too fast I asked them to speak slower. 


That's the only way to go...
Don't fight it... 
Accept it and deal with it... 


Does anyone have any thoughts on this?

Epilepsy Update 19 November 2016

Things calmed down a few days after my last entry- the 17th of October- and I had 4-5 good days. As a matter of fact 2 of those days were absolutely perfect! No sign of Epilepsy at all! There were only minimal discomforts on the other days. I breezed through those days with a song in my heart, full of energy, my body feeling young and healthy. I enjoyed being around people and even conversing with people. 

What a relief! A time of rest. Time to recover and re-charge my batteries and prepare for the next round. 

Yes, I'm finally beginning to accept the fact that there will be a next round. I'm learning to stop trying to convince myself that I have finally achieved the ultimate, permanent "good phase" when I do have a good phase, the good phase that will never end. 

They talk about the "power of positive thinking" and I've always lived by that principle and have always been, in fact, a positive person, but thinking the Epilepsy will not flare up again while in a good phase is a bad thing in this case because Epilepsy IS an up and down thing and it WILL flare up again and I will only be in for a big disappointment if I believe otherwise. 

The good phases are for resting up and recovery. For re-charging my batteries. For reflection on the last flare-up and how I coped with it, what may have helped and what may have made it worse. In other words to learn from the last bad phase in order to be able to cope with the next one better. The power of positive thinking doesn't apply to stopping bad phases in this case, but rather to coping with them better in the future. They cannot be stopped. They are a part of life and always will be. 

So I enjoyed those few days of freedom and health, and reflected on how I coped with the last bad phase. It was obvious that I had allowed the emotional storm to defeat me once again, to beat me down and suck the very life out of me. I en-devoured to try and stay in control of my emotions and not let myself fall the next time- to stay calm and still inside and just ride it out. That's what the experts tell you: 

Stay calm and let it happen... 

The project I run at work deals with adults but there are many other projects as well. Three of the other projects, all of them dealing with young people doing rehab apprenticeships, are required to take them on an educational field trip each year. The problem is that they have around fifty young people all tolled and there are only female employees and they wanted to have a couple of men along for the trip this year. So they asked me and our company psychologist to come along, and we both agreed. That meant a long bus ride on a chartered bus and three days at a youth hostel in Stuttgart, and many activities while there. Now "only" about thirty of the clients actually showed up for the trip but there were some behaviorally challenged individuals along. We left on the 2nd of November and returned on the 4th. I was actually kind of looking forward to it. I had gone along last year and it had been a great time. Plus, here I was having a good Epilepsy phase. I was feeling so good that I had even driven one of my own clients to a clinic in Frankfurt a.M. in a company car the day before we left for Stuttgart! Hey, you know I've got to be feeling really good before I get behind the wheel of a car! That only happens like three times a year or so!

I was feeling a tiny bit fuzzy as we all got into the bus on the morning of the 2nd of November to go to Stuttgart, but no big deal. I told myself to just stay nice and calm and everything would be fine, it wouldn't get any worse. I didn't feel much like talking and found a seat by myself and mostly just stared out the window for most of the ride down there. None of the kids knew me so they didn't try and talk to me anyway. 

I did see some indications that I was dealing with a bunch of over-sensitive babies when I had to go on the bus intercom and try and set up a WhatApp group to insure communication during the trip. I had to swallow some impatience that wanted to come up inside me that made me want to snap at them and tell them to grow some balls!  In the end it wasn't possible to set up that group and I was forced to set up some kind of complicated broadcast that I'd never done before because they were so finicky and fussy and prissy. 

After having ridden the horses that I've ridden and climbed the mountains that I've climbed in my life I get a little sick to my stomach when confronted with the sissified youth of our day, whose idea of roughing it seems to be going more than 10 meters from home without a soft, pink pillow for their tender feet. 

Oh well, I did the best I could and went back to my seat and stared out of the window for the rest of the ride. After arriving at the hostel we checked in and ate lunch. 

Our first activity after lunch was to go to the planetarium. I used to love the planetarium as a kid but hadn't been to one since like the turn of the century, and I was really looking forward to it. 

I soon discovered that the planetarium is an Epilepsy trigger for me...

I came out of there reeling...

We let those young people go for a couple hours after that and we colleagues went to a cafe for a cup of coffee. My brain was fried and my whole body was trembling. I was having motor-skills difficulties- but tried to act like everything was fine in front of my colleagues. We found a cafe and sat down. 

Suddenly I got hit by a bad complex partial seizure... 

I tried to tough it out and not let it show, as usual, but it kept intensifying and I finally had to go outside. I stood out there on the sidewalk leaning on something, too ashamed to sit down even though the ground was pulling at me with all its might. Deniz, our psychologist, came out at one point and asked if he could do anything for me. What people don't realize is that asking if they can do anything for you while you're having a seizure is the wrong thing to do because it's so difficult to talk, and not being able to talk right makes you feel like an idiot, which in turn makes the whole shooting match worse than it already is. All you want is for someone who cares to just be there with you, but be quiet. It does a lot of good if they comfort you after the seizure ends .

That trip was over for me at that point...

A bad seizure had been triggered by the planetarium and I would not recover from it for the rest of the trip...

That seizure lasted for maybe fifteen minutes and left me with a terrible migraine that raged on for the rest of that trip, and for several days afterward as well, complete with all of the trimmings. My brain was scrambled eggs. My nerves shot and I was extremely irritable and short-tempered. I was in a permanent state of sensory overload. 

The perfect condition for dealing with a bunch of special snowflakes...

I think the worst thing was, however, that my emotions completely and totally crashed during that seizure. I fell and hit rock bottom. 

I spent those days hyper-aware of my "lone-puma" existence in this world, as I do during every Epilepsy related emotional crash. My professional life consists of listening to other people's problems and my private life is full of people who mainly talk about their problems, yet I myself have had no one to talk to for decades. All attempts I've made have been met with rejection. I do not even try. I cope with the fact very well almost all of the time and actually need no one- with the exception of such times as I'm describing.

Still, I tried to put on a brave face on that trip when with others, but I literally broke into tears and balled my eyes out each and every time I was alone. 

Hot tears of deep, deep sadness and loneliness. 

I lost my temper with those sissy snowflakes a couple of times! I lost all patience and really went off the deep end and became very unprofessional in my discipline. On the 2nd occasion I basically had them sitting in a circle and I went up and down in the middle like a drill sergeant, berating them bitterly for being a bunch of sissies who weren't fit for the realities of a dog-eat-dog world. I basically told them they'd better grow some balls or else quit right now and go back home to their mamas and stay there- not forgetting to fill out a welfare application on the way!

I did admit to them the next day that I'd overdone it, and apologized...

Conny was waiting for me when the bus pulled into Aschaffenburg the final day of the trip. I got off the bus, threw my bag into the trunk of the car and she drove me home. Once home I just took my clothes off and went directly to bed and slept for several hours.