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...