Wilbur are you saying that really you are like everyone else in that when you become too stressed you stop various aspects of self-care and suffer the consequences which in your particular case are seizures?
Of course I am....I'm no different than anyone else .....
In the moment, a full blown grand mal seizure is biologically stress relieving....and that reduction in stress lasts up to two weeks, anybody will get what they want because my answers are typically, "Sure, go ahead" and it takes about two weeks to be fully in the present, and be totally grounded. I'm conscious and aware, but just super pliable. The stress I previously was under.....is much reduced and "Everything is okee dokee in my immediate post-seizure world." Then after a couple of weeks, I start assessing the damage I've created after a seizure occurs and get very depressed...beat myself up....cry and then I'm miserable...because they rarely happen.....only when
I falter cause I get caught up in emotions. Then I go into post seizure mode, becoming super careful about meds, safety....mine and others....and I curtail driving,stop taking baths, no swimming or being out on my dock fishing or walking around, etc. until I'm sure the seizure was caused by my lapse of care.....and not by medication not working or other issue (I am also TBI and hypoglycemic).
In my case, issues with safety/ loss/ fear can send me to a dissociative state more frequently and is the driving component which sets me up for a seizure.... a...nasty divorce (loss/a huge security change/fear and hurt) =seizure....incidents involving terrible loss =seizure, and a fear for my life, or fear created from harrassment and bullying at work (terrifying fear -job threat= seizure). PTSD and dissociation don't help with recall of taking meds and this sets me up not to think too hard about it cause my focus is on fear....being safe (didn't consider at the time being conscious was a factor in staying safe). A seizure is a nasty wake up call for me....and while initially, an opportunity to emotionally escape (an emotional break)....when I come to....nothing has changed...not really, the problem is still there....and now I've compounded it and substantially reduced independence.
With that said, the "consequence" of a seizure lands me added emergency/hospital bills, humiliation/awkwardness in front of others (some with emotional disorders or autism) and the resulting reactions from others at my job or wherever, as to whether I'm capable to work independently, unsupervised (gotta be conscious to do that, right?), or seen as reliable (added humiliation), combined with the loss of independence while abstaining from driving....are now huge reinforcers to take better care of myself.....maybe a hard lesson that no matter what is happening....priority #1 eat, take meds on time, and if I must....take meds for sleeping every day until stress subsides. Staying vertical and conscious has become a daily goal, and I can't help the rest of me if I'm not awake and independent. I have a very thin support structure....and no family to count on...just me.
Not sleeping for more than 4 hrs a night is a surefire way, over time, to further screw up life because eventually my brain will shut down-at the most inconvenient time..publically...and create that dramatic moment...I'm trying to avoid. I didn't used to view seizures as a huge punishment, but I do now.. it was after I got a new chair. at work...they took my old one at work...that I had a seizure in..at at the time, I had no understanding why they took my chair...Proudly at work, a couple weeks later I was presented with a new one. Don't you like your new chair? says the custodian, a day later, "Enjoying your new chair," says my boss (like I earned it for doing something fabulous), and the following year, "How's that new chair working for you?"-frankly, I came to hate that chair just a bit after I realized why I had lost my old chair and gained a cheaper and less comfy new one. At the time, I couldn't figure out why I needed a new chair.....that also took two weeks to conclude the answer-OSHA Regulations required the removal of the chair....when contiminated with bodily fluids. I cried when I figured it out....hadn't a clue "that happened!"
Seizures do come with negative emotional, physical, and social price. I have had seizures that put me in respiratory arrest only to wake up to "You were in respiratory arrest," and with a history of previous status seizures when I was younger (which are now always a possibility under the right circumstances) and not a good idea- l live alone.... Having them in public or at work lets everyone get involved in my business (that alone is a huge issue)....then life/people become a constant reminder...."How are you feeling, today?" for a month after being carted out of work in an ambulance. Concern from people who never spoke in the morning to overly concerned (I'm thinking...just leave me alone-in those instances) and having a seizure around already traumatized children who don't know what to say, and are in freeze mode.....just sit there diss, shut down and dissociate because they can't move to go get help....makes me feel bad for them....then this requires great care in conversation alone to smooth out their personal feelings about a seizure of mine. Never a pleasant moment...but it usually helps significantly.
I have had seizures most of my life, they have always been my problem and I believe are within my power to control, (and I believe this way as long as I stay grounded) and the solution is self care...with PTSD-a must,. my new NOW reality being a single person without a support system...self-care is my #1 priority. So I have alarms on my phone asking if I took my meds in am and pm, and on my computer too both am and pm, and meds are on table, I have back up meds in car, my purse, and I did at work too,meds in desk, and on my key chain...always by my bedside in a see through container with a bottle of water right there. If the day is bad, and I'm needing to make a daily list to better function, I write take meds as a standard part of my list making. Reminders are helpful....now I have lots of reminders in case that day I'm more of a PTSD space cadet ...but hell yeah, I'm super human...and it took a long time for me to put meds, sleep, eating, stress reduction as # 1 as that has not always been the case. I am doing so much better now than a couple of years ago. In the last year....things so far are tons better with my safety and health and no seizures! When I lost access to the one I love the most, my grandson, because I can't be trusted due to having 2 seizures in a year... and his mom can't feel he is safe left in my care-my priorities about me changed, because seizures do impact others and their perception of my competence and even who I am as a person. I haven't seen him in over a year..part of this due to the divorce.....the other..a concern for his safety..seizures can have a huge long-term consequence.....and can create personal loss. So that's why I'm all about self care as #1.
