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 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
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
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...
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