Having a really hard time of it

[Saranoya]

I have a standing agreement with pretty much everyone who knows me: when I have a seizure, they won't call an ambulance unless:

1. I'm obviously and severely hurt due to the fall
2. My seizure has been lasting more than five minutes (never had one of those)
3. I'm having them in multiples

And so, as per the agreement, last Wednesday an ambulance was called after I'd had my third seizure in a row. I don't remember anything between going to the bathroom (where I had my first seizure and broke my glasses) and the arrival of the ambulance, though I'm told that I communicated in nods and blinks and grunts. So maybe people see what they want to see, and maybe I actually was aware enough to react to them. Who shall say?

In any case, by the time the ambulance rolled around after the third seizure, I was "drifting up", as I like to call it. It seems they had some trouble finding us, and then also, it took the people who were with me at least five minutes to decide that yes, this is a time to call 112. That last part is my fault. I have indoctrinated everyone into believing that if they make the call prematurely, I will hate them forever after. This is not because I actually will hate them, but because I like to avoid unnecessary contact with EMS at any price.

Lo and behold, once the ambulance arrived, my prejudice against EMS was once more reinforced. I was confronted with an EMT who got angry at me, first because spasticity (heightened by the seizure) made it difficult to lift me onto the stretcher and keep me there, then because I wasn't conforming to his cookie-cutter image of what the post-ictal phase of a tonic-clonic seizure should look like (comment to bystanders: "I don't think this is really epilepsy. I've never seen anyone with this much muscle tone right after a seizure"), and then because my wheelchair had just keeled over into a men's toilet, and therefore wasn't squeaky clean. Far be it from him to clean the bus after hours, or even between calls.

When we got to the ER, things got better, but only marginally so. It was the usual song and dance. What kind of medication are you on? (Hand them the current list. Watch their eyes go wide.) Have you been taking these as you're supposed to? (Yes, but I know you won't really believe me until the blood results come back.) How exactly did you fall? (I'm an epileptic; how should I know?) Did you hurt your head? (Not really.) Are you sure? (Yes, but go ahead, do a CT if that makes you feel better. It'll only be the sixth one this year.) OK then. I'm going to go talk to my supervisor, but I really think we should keep you here for observation for a while. Just to be sure. (Sigh. Another sorcerer-apprentice covering their behind.)

Don't get me wrong: I understand what's going on here. I have a serious problem, and someone should really be doing something about that. That's what these sorcerer-apprentices, as I call them, are privately thinking. Only, they can't decide whether to blame me, an incompetent hack of a neurologist somewhere, or maybe a little bit of both. The truth is, many people have tried many different things, and it seems I always end up with the same result: ten to twenty t/c's a year. Which is better than the forty a month I had in February and March of 2013. That's my new benchmark now. As long as we aren't heading back in that direction, I'm pretty happy. So why aren't they?

Because they are doctors. They're trained to heal. Not to watch a train wreck do anything an everything she can in order to make something of her life against all odds. And that is exactly why I prefer to stay away from them as much as possible. I figure if we don't run into each other, we'll both be happier.

But I ran into a stranger on the internet yesterday, who said something that stung. It stung so much that I immediately felt compelled to send the following e-mail to most of my friends:

Hi,

Someone (the messenger doesn't really matter in this case) slapped me on the proverbial wrist yesterday. I've been told that it is unfair and manipulative to expect other people not to call an ambulance when I've had a seizure. Everybody knows what my preference is in this instance: I avoid EMS like the plague, and I'm convinced they aren't always necessary. However, fundamentally, this particular messenger wasn't wrong.

It's by demanding the absence of EMS, outside a very specific set of circumstances, that I create situations in which compassionate bystanders such as yourself have no choice but to "take care of me". Responsibility that really belongs somewhere else is foisted upon you. I can say a thousand times that this bugs me (which is true), but me saying it won't change anything for you.

So I hereby give you my permission to call an ambulance every time I have a seizure. I won't hate you for this. I may be angry at the universe, or angry at my own wildly imperfect brain. But not at the people who are trying to help me.

Thank you for being here for me.

Rationally speaking, I know that this is by far the best thing I could have done to make dealing with my epilepsy easier for the people around me (friends, colleagues, teachers at university, etc.). However, for me it creates so many extra hurdles. That much more time lost. That many more EMT's who don't get me, and therefore decide I am a faker. That many more sorcerer-apprentices who at once don't know how to really help me, and are afraid to let me go. That many more attending neurologists to whom I have to explain the interaction between spasticity and seizure activity.

Life with epilepsy sucks.

 

[Cint]

Life with epilepsy sucks.

:agree: It does suck and moreso for some than others! In a way, I feel the same about the EMTs and some of the neuros. Unless they are educated specifically about epilepsy and the different types of seizures, they're really not of much value. They just like to think they are. So we must tell them what we experience. I've had my share of seizures in public and 911 calls being made and questions asked, CTs, MRIs, done, plus the strange looks and remarks others have made. It is a very difficult struggle and sometimes I just want to run and hide, especially now the holidays are upon us...

Anyway, I hear you. Hang in there!

 

[Saranoya]

Hi Cint,

Thanks for your moral support.

Just out of curiosity: do you go to the ED every time you have a seizure outside your home? If not, what's your "standing agreement"? Do you think mine's reasonable?

A stranger told me I'm being unfair and manipulative, yesterday, and it stung. It can only sting that much when I think it's true. But really, where *should* I draw the line? Even the ED docs themselves have told me that coming to the hospital every time is overkill, for someone with known epilepsy ...

 

[Cint]

Hi Cint,

Thanks for your moral support.

Just out of curiosity: do you go to the ED every time you have a seizure outside your home? If not, what's your "standing agreement"? Do you think mine's reasonable?

.

I've had numerous seizures outside of my home, some of them TCs and that is when the ambulance/paramedics have been called. My "standing agreement" amongst my family/friends is to only call the 911 when:

1)the seizure(s) prolong for 5 minutes
2) I go into another bad seizure immediately
3) I suffer any serious injury, due to the seizure (that has happened, too)

I think you're being reasonable. Unless someone has walked in our shoes, they have NO idea what the hell it's like to have those god awful seizures.

 

[Fedup]

Saranoya

That sucks you have had a lousy time of it, but I do not blame you for what you asked you friends and everybody else to do for you by not calling 112 and if I am honest about it I would have the same agreement as well. Yes we are putting responsibility on the shoulders of others, but it is responsibility others should be able to accept and handle and make the necessary distinction if the call is needed.

Where to draw the line, that is a question that only each person can answer for themselves as our circumstances differ in all respect except one - E - do I think you did the right thing, absolutely.

 

[Saranoya]

Yep, it seems like we've got pretty much the same idea on that.

When I have a seizure on the bus, or at university on my way to a class, or in the hallway at work or something, then I've got no choice. The people who find me in those places have their standard procedures, and procedure usually states that any "seizure-like activity" is a medical emergency for which 112 should be called immediately. But when I'm around people who know me (colleagues, classmates and the like), I really prefer to avoid all that.

The thing is, I'm often putting others in a difficult position. People have their lives, which, much like me actually, they'd prefer to move on with. Yet when a seizure hits in class, in reality the teacher has no choice but to halt the class and attend to me. When it happens at work, two or three colleagues will stop working to make sure I'm OK and then drag me to the couch. Like I said in my e-mail, that bugs me. And telling them it bugs me doesn't change the situation. Also, I was stuck at music school (where I take piano lessons) for 2+ hours last week, because I always have heightened muscle tone after a seizure (something most paramedics find weird, and which will prompt a few to decide I'm a faker). It just took that long for my limbs to recover enough that I could go home on my own.

It's actually in direct response to that incident that I sent the above e-mail to my friends, today. If the EMT's or the emergency room are busy poking holes in me, at least I'm not bothering anyone else. And those guys are professionals at it. I'm pretty sure they'll send me the bill in due time.

Disclaimer: yes, I know that what I pay for a hospital visit is not the true cost of that visit.

 

[Fedup]

Saranoya

I know exactly where you are coming from and what you say, it is in fact all true in these cases but that is what we have to live with.