This past week was a mixed one for me, mostly good and partly bad. It's difficult to describe in a way that might help anyone reading this, because it's complicated and the various components are intertwined and overlap each other, and I have not yet come very far in figuring out what may simply be the normal ups and downs of Epilepsy, and what may be the effects of behaviors, places, situations, circumstances, etc., that I could change or avoid in order to minimize the effects of Epilepsy- other than those few obvious triggers that I've discovered that set off massive complex partial seizures, and which I avoid like the plague.
My last update was one week ago today, and that ended up being a seizure free day. The following three days were also completely seizure free! What's more, I had no migraines on those days either!
Four whole days seizure and migraine free...!!!
However...
Tension and anxiety were right there at the door, trying their best to get in and take over from the moment I woke up the day after that last update, and they stayed there throughout those four days too.
I still consider those days to have been good days, despite that anxiety having been there at the edge of my consciousness, ready to pounce on me the moment I let my guard down.
I see four separate issues in this case:
- seizures
- migraines
- depression
- anxiety
Since there were no seizures, no migraines, and although I haven't mentioned it yet no trouble with depression either, the only thing I had to deal with on those four days was the anxiety. That's almost like vacation! It was actually a good learning experience. I was able to concentrate on that one thing alone, on learning to cope with it, not letting it take over control.
It's kind of funny to say "concentrate on that one thing alone", because I work full time and the fact is that I was at work all day on all four of those seizure free, migraine free days on which I say I was concentrating on that one thing alone. I have no idea how to explain that except to say that staying calm is becoming a program that is always running in the background. A constant effort to remain calm, to do everything slowly and thoughtfully, to stay in the moment. That effort begins the moment I wake up, with my first cup of coffee in bed. My brain tends to want to start thinking about the day ahead of me just as soon as my eyes open and I cannot let that happen. If I do that will tie me up in knots inside and the day will be over before it can even begin. I have to do my best to empty my mind and come to the moment, to inner stillness. Silence...
The kind of work I do makes that especially dangerous for me. The people who are placed in my care are broken people whose lives are in a shambles. My job is to take them under my wings, so to speak, and help them to get back on their feet and put their lives back together. If I start thinking about them and the work I must do with them on a particular day, before I can even find my own self, then I get tied up in knots inside and the chances are that it'll just get worse as the day goes by. The thought processes, concentration, memory, etc., which are already made so much more difficult by a damaged brain, are completely destroyed by tension and anxiety.
I'm discovering, as I've written before, that the best weapon against that Epilepsy anxiety is to stop it before it can really get started. Don't let it get the upper hand. Breath deep and consciously remain calm in the face of its efforts to gain control. I'm happy to say that that worked out fairly well last week.
So those seizure free days were Saturday through Tuesday. I had one CPS, complex partial seizure, on Wednesday, but it was fairly light and only lasted about two minutes. No big deal. No migraine. No seizures on Thursday again. Yet a migraine began on Thursday evening, and I knew from experience that it was very likely that another difficult phase was beginning. I felt sorrow, frustration, and a little hopelessness come up within me. Oh man! Why? This sucks so bad and I don't want it anymore! Then some of my lessons came to mind. I realized that this is simply my life. I have Epilepsy and there's nothing I can do about it. I must ride it out. Bad phases go better when you remain calm and ride them out, don't fight them. That worked. I watched some brainless stuff on YouTube and then went to bed. But what caused it to start again? Was there a trigger? Had I done something that could be avoided in the future? Nothing that I could detect.
Finding inner balance was more of a struggle than usual the next morning, Friday morning. The migraine was still there, and was even worse. Thought was very difficult. I did my best while drinking my coffee in bed, trying to accept it and telling myself I'd get through the day one step at a time. I told myself that it was Friday, only six hours of work and then the weekend. I would make it. I got out of bed and began getting ready for work.
Not long before I had to hop on my bike and ride to work I got hit by a bad CPS...
Suddenly the world changed. It became oh so hard to stay on my feet. Having motor skills problems, swaying a little. I was holding on to a chair tightly, moaning, feeling helpless. Putting my coat on seemed like a monumental task, packing my backpack for work impossible. What all did I need? Let me see: backpack, bike lights, gloves, medicine, emergency bracelet, sandwiches. Anything else? I don't know. Oh help, I just can't make it. This burden is too heavy for me, I just can't handle it. I broke out in tears. I wanted to lay down and rest. I felt like I just couldn't make it. Yet I simply had to go on. If I called in sick every time I'm doing bad I could retire today...
I kept on going, the seizure raging, my brain practically useless, tears streaming down my face. Picking things up but not knowing what to do with them. Waiting for a second, then it coming back to me. Another step then forgetting again. Over and over again. I half-lurched down the stairs and then I was on my bike, riding to work with the headlights of cars coming at me from all directions and hardly able to comprehend which ones were a danger to me and which weren't. Finally the seizure lifted, blending into a migraine, meaning I could process all the stimulus better. I got to work alive. That migraine stayed the rest of the day. I endured like 8-10 seizures in the course of the day, so many that I lost count.
What had triggered all of that? I just don't know. Maybe nothing at all. Is that simply the normal ups and downs of Epilepsy? I seek a recognizable trigger that I can avoid in the future, but I see none. I slept badly Thursday night, but did I sleep badly because a bad phase was starting or did a bad phase start because I slept badly? Was it all because the week had been so strenuous? But it wasn't any more strenuous than usual.
I practiced coping. I spoke to myself inside. "Just stay calm Mike. Accept it. It's just Epilepsy. This is your life. It's easier to handle if you just stay calm and go slow and easy. Ride it out. The world is not going to end. Be thankful for the good days that you just had. Good days will come again."
That helped, but I still stayed on the rim of a black hole, ready to fall in if I let my guard down. I thought of my home gym and told myself I'd take a nap after work, then work out, and that would help. That was the day for the chest workout, my favorite one. I did in fact take a nap after work, but the thought of working out after I woke seemed like too much, like it would take monumental effort. I thought to myself, "Just take off some weight plates and do a really light workout", and that's just how I started, shades drawn, dim lighting, and absolute stillness, as much concentration on my body as I could muster. At the same time my brain nothing but a cauldron of suffering. Now, I had a new set of bar bells and a couple of new weight plates that had never been used before, and I must say that that caused just a spark of joy in a brain lost in an epileptic daze. I lay down on my weight bench first of all, hot water bottle under my neck, just trying to let my weight sink into the bench and fighting against the tears that wanted to come. After a while I got up and took those new bar bells into my hands, and began working out, slow and easy, fluidly, with as much concentration as I could bring to bear. My brain actually began to clear just a touch, and in those circumstances every little bit helps. What really mattered, however, was that I began to take heart. I began to become stronger emotionally. My brain remained in that epileptic daze, though a tiny bit better, but my heart began to quiet and say, "I can handle it."
How blessed I am to have that sport, and that it does me so much good. How blessed I am to have all the equipment that a man could ever desire. How blessed I am to have begun that sport long before I got Epilepsy, so that my body keeps the proper posture and knows the movements by itself and doesn't need my brain, meaning I can work out even when my brain is in that condition. How blessed I am!
I should discuss one other thing, and that is working out and seizures. It should be clear that you can't work out if you're having seizures. Well, maybe, if they're only light and short and you do the right workout- meaning very, very light weight and nothing over your head that could fall on you if you have a seizure bad enough to give you motor skills problems.
I felt sure that the seizures had burned themselves out during the day yesterday, and that no more were likely to come. Still, I have a padded roll that I put over the bar, just in case. I could let it down onto my stomach if necessary and wait the seizure out. I also mixed exercises on the bench with ones using those new bar bells, so I didn't have weights over my head the whole time.
If you're having seizures which are light and short it's often still possible to do sitting- possibly even some standing- exercises with bar bells and light weights. Laying exercises too, of course.
Unfortunately working out is just not possible when you're having heavy seizures. Nothing at all is possible when you're having heavy seizures.
I'd love to hear any comments anyone has about this, or any other entry I've written. Different people have different experiences and our strength lies in sharing our experiences and learning from each other. I would also be happy to answer any questions anyone may have.
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