With about 5 minutes left in the RIT hockey game tonight, I looked over to the pep band (1 section over from me and the corner crew) and saw a kid having a seizure in the middle of the band. I literally sprinted up the steps, over to the next section, and down to him.
One lady pretended like she knew what to do, but she had no idea. She just kinda got everyone out of the area and watched, so I took over. I rolled him on his side, like you're supposed to, and just kinda supported him in that position. There was a hoodie under his head, but it was basically just laid out with only a small part of it under his head. I saw the side of his head hitting the concrete and literally felt vibrations in the floor from his head hitting it. I yelled at someone in the row above me, who was also just kinda watching, and told them to take the hoodie, bundle it up, and get it further under his head so that it was actually doing something. Meanwhile, I'm trying to hold his head and body up just enough to stop his head from hitting the ground. Someone got the hoodie under his head and I set him down, still keeping him on his side.
As the paramedics came over, I kept him on his side until they could take over. The seizure was stopping, but he still wasn't there consciously. When the paramedics got the situation more under control, I left and let them take over. I went back to the corner crew, but I just couldn't stay. I went over to the band and reassured them that he was going to be OK. The band director came up to me, thanked me, and shook my hand. I proceeded to tell him that I have epilepsy, told him a little about camp and that I had never witnessed one outside of camp.
I've said before that I've witnessed a ton of seizures at camp, but it would catch me off guard and probably scare the crap out of me if I saw one in public. I was right. I'm kinda drained both emotionally and physically right now. I had to turn him on his side using mostly my right arm, and that is the side that is always weak from my seizures. I was supporting him (holding him on his side) with both arms, but he wasn't exactly a small guy, so that didn't help. He's not huge, but not as small as the kids at camp that I'm used to. (Plus I generally have help at camp.) All of that left some soreness in my arm.
Not only the physical, but also the mental/emotional stress. I've witnessed so many at camp, but this was different. I can't imagine what the band and their director are going through right now. I was on the verge of tears afterward, and I don't even know the guy. I know that they're all worried about him, but I hope that they are alright too.
Friday, November 21, 2014
Wednesday, September 3, 2014
Seizures triggered by diet?
I think I've found another of my seizure triggers: food (and/or nutrition.) For various reasons, I know that it is possible for diet to both cause and prevent seizures (depending on the situation)
It seems like a lot of these seizures are occurring when I haven't eaten in a while. I'm not necessarily hungry, just haven't eaten in a while.
I noticed a while ago that it seemed as if my seizure almost correlated with my workouts, but the relationship wasn't quite there. I didn't look into it heavily, but I did look enough to make the decision that "nah, I don't think that has anything to do with it." I still don't think that they are correlated... at least not directly.
Working out means that you need to increase intake. It makes your body require extra nutrients in order to maintain the energy level that you are used to. Specifically, working out mainly requires extra carbs and extra protein. I know most of you are thinking... "but I've always heard that low carb diets are the best!" Not quite true. Carbohydrates give you energy. If you workout without increasing your carbohydrate intake, your body is going to be lacking necessary energy. If you are trying to lose weight with diet alone, and no extra exercise, then a low carb diet is probably better.
A quick science/nutrition lessen:
Carbohydrates: There are 2 main types of carbohydrates - simple carbs and complex carbs. Simple carbs are things that your body can break down easily and use as short term energy. Complex carbs take longer for your body to break down, and therefore provide long term energy.
Some sources:
http://www.fitday.com/fitness-articles/nutrition/carbs/simple-vs-complex-carbohydrates.html
http://www.nutritionmd.org/nutrition_tips/nutrition_tips_understand_foods/carbs_versus.html
Protein: the main function of protein is to help your body repair itself and grow.
http://www.nytimes.com/health/guides/nutrition/protein-in-diet/overview.html
Before a workout, you should have a mix of carbs and some protein. The simple carbs will give your body extra energy that will help kick-start your workout, some complex carbs will help sustain the workout, and protein will help your body to start to repair itself as quickly as possible. One of the best pre-workout meals is a PB&J sandwich. The PB provides the protein, the jelly provides simple carbs, and the bread provides complex carbs.
After a workout you generally need more protein than anything else. While working out you are literally damaging your muscle by causing microscopic tears. The muscles repair themselves over time, and are stronger after this repair process. Extra protein will accelerate this process, as well as allowing the muscle to repair itself more thoroughly, increasing strength just that much more.
The difference between these two requirements are why there are different protein bars for before a workout and after a workout.
So why all of this diet and science mumbo jumbo? Well, as a lot of you know, I've been working out a lot lately. Mostly walking (and running when my leg allows me to) and some lifting here and there. My body is in a constant state of searching for energy and repairing recent muscle damage from those workouts. Since it is constantly looking for these things, I need to constantly provide them. Constantly.
I seriously try to eat once every couple hours. Not necessarily a meal, but some fruit or a snack of some sort. Sometimes a "snack" is a sandwich, sometimes it's pretzels, sometimes it's whatever I can find. But eating that often is not always possible. When my body requires this fuel and can't find it, it doesn't know what to do. Lack of sleep and exhaustion are common seizure triggers... so my guess is that lack of carbs and/or protein may exhaust my body, possibly to the point where I start seizing.
Now all of this is just a theory... "A game theory"... Oh wait, this isn't YouTube (look it up.) But although it's just a theory, I think it has a lot of merit. It's seriously hard to eat enough to provide my body with what it needs. I am not usually tired, which means that I'm probably getting enough carbs, but that doesn't necessarily mean that I'm getting enough protein. I said at/after camp that I didn't think I was getting enough protein, and that may have been causing the (many) seizures that I had at camp. That food was extremely lacking in the protein department, which is what brought that thought to mind. If I'm not getting enough protein, then my body could be overworking itself in an attempt to heal and, boom, seizure.
Now the question is, how do I provide myself with constant protein throughout my work day?
It seems like a lot of these seizures are occurring when I haven't eaten in a while. I'm not necessarily hungry, just haven't eaten in a while.
I noticed a while ago that it seemed as if my seizure almost correlated with my workouts, but the relationship wasn't quite there. I didn't look into it heavily, but I did look enough to make the decision that "nah, I don't think that has anything to do with it." I still don't think that they are correlated... at least not directly.
Working out means that you need to increase intake. It makes your body require extra nutrients in order to maintain the energy level that you are used to. Specifically, working out mainly requires extra carbs and extra protein. I know most of you are thinking... "but I've always heard that low carb diets are the best!" Not quite true. Carbohydrates give you energy. If you workout without increasing your carbohydrate intake, your body is going to be lacking necessary energy. If you are trying to lose weight with diet alone, and no extra exercise, then a low carb diet is probably better.
A quick science/nutrition lessen:
Carbohydrates: There are 2 main types of carbohydrates - simple carbs and complex carbs. Simple carbs are things that your body can break down easily and use as short term energy. Complex carbs take longer for your body to break down, and therefore provide long term energy.
Some sources:
http://www.fitday.com/fitness-articles/nutrition/carbs/simple-vs-complex-carbohydrates.html
http://www.nutritionmd.org/nutrition_tips/nutrition_tips_understand_foods/carbs_versus.html
Protein: the main function of protein is to help your body repair itself and grow.
http://www.nytimes.com/health/guides/nutrition/protein-in-diet/overview.html
Before a workout, you should have a mix of carbs and some protein. The simple carbs will give your body extra energy that will help kick-start your workout, some complex carbs will help sustain the workout, and protein will help your body to start to repair itself as quickly as possible. One of the best pre-workout meals is a PB&J sandwich. The PB provides the protein, the jelly provides simple carbs, and the bread provides complex carbs.
After a workout you generally need more protein than anything else. While working out you are literally damaging your muscle by causing microscopic tears. The muscles repair themselves over time, and are stronger after this repair process. Extra protein will accelerate this process, as well as allowing the muscle to repair itself more thoroughly, increasing strength just that much more.
The difference between these two requirements are why there are different protein bars for before a workout and after a workout.
So why all of this diet and science mumbo jumbo? Well, as a lot of you know, I've been working out a lot lately. Mostly walking (and running when my leg allows me to) and some lifting here and there. My body is in a constant state of searching for energy and repairing recent muscle damage from those workouts. Since it is constantly looking for these things, I need to constantly provide them. Constantly.
I seriously try to eat once every couple hours. Not necessarily a meal, but some fruit or a snack of some sort. Sometimes a "snack" is a sandwich, sometimes it's pretzels, sometimes it's whatever I can find. But eating that often is not always possible. When my body requires this fuel and can't find it, it doesn't know what to do. Lack of sleep and exhaustion are common seizure triggers... so my guess is that lack of carbs and/or protein may exhaust my body, possibly to the point where I start seizing.
Now all of this is just a theory... "A game theory"... Oh wait, this isn't YouTube (look it up.) But although it's just a theory, I think it has a lot of merit. It's seriously hard to eat enough to provide my body with what it needs. I am not usually tired, which means that I'm probably getting enough carbs, but that doesn't necessarily mean that I'm getting enough protein. I said at/after camp that I didn't think I was getting enough protein, and that may have been causing the (many) seizures that I had at camp. That food was extremely lacking in the protein department, which is what brought that thought to mind. If I'm not getting enough protein, then my body could be overworking itself in an attempt to heal and, boom, seizure.
Now the question is, how do I provide myself with constant protein throughout my work day?
Monday, September 1, 2014
Treatment Options
As I sit here, having yet another seizure, I have to think about my future options.
I started on Vimpat last week, bringing the medicine count up to 3... Keppra, Lamictal and Vimpat. I am currently on 100mg of Vimpat and will double that to 200 a week from today. If that doesn't help (which it currently isn't) my doctor wants to do a long term EEG. For those who don't know, a long term EEG means that I would sit in the hospital for up to a week with wires connected to my head, waiting to have a seizure.
I think that his thought process is to see if I'm a candidate for a VNS. Again, I'm sure that a lot of you don't know what a VNS. Without going into a lot of detail, and doing what I can to explain while seizing, VNS stands for Vagus Nerve Simulator. It is implanted into your chest (around where they put a pacemaker) and it occasionally sends an electrical pulse to your Vagus nerve, which connects up into your brain. The electrical stimulation to this nerve can prevent seizures. If you do have a seizure, it can be activated by swiping a special magnet over the device and effectively stop the seizure, or at least lessen the duration of the seizure.
So after all of that, it sounds like a great idea. It would potentially help with my seizures (if I'm a candidate) so why not? Well, it is a surgical procedure to implant it. From what I hear it's outpatient surgery, so it's not incredibly intense, but it's still surgery. As a coworker pointed out to me, removal of wisdom teeth is also outpatient surgery, but that hurts like hell for about a week.
Not only that, but it requires a new battery every 4 years. So that means another surgery every 4 years to replace the battery.
The question I have to answer for myself: Am I having enough seizures to do this? Is it worth it in the end? I know none of you can answer that for me, but I need to think about it. Before I try the VNS, I'd like to wait until the medical marijuana goes into effect and try that. We'll see though. It's been a long battle so far, and I'm not about to stop fighting.
PS - it's been about an hour since this seizure started, and it's still going.
I started on Vimpat last week, bringing the medicine count up to 3... Keppra, Lamictal and Vimpat. I am currently on 100mg of Vimpat and will double that to 200 a week from today. If that doesn't help (which it currently isn't) my doctor wants to do a long term EEG. For those who don't know, a long term EEG means that I would sit in the hospital for up to a week with wires connected to my head, waiting to have a seizure.
I think that his thought process is to see if I'm a candidate for a VNS. Again, I'm sure that a lot of you don't know what a VNS. Without going into a lot of detail, and doing what I can to explain while seizing, VNS stands for Vagus Nerve Simulator. It is implanted into your chest (around where they put a pacemaker) and it occasionally sends an electrical pulse to your Vagus nerve, which connects up into your brain. The electrical stimulation to this nerve can prevent seizures. If you do have a seizure, it can be activated by swiping a special magnet over the device and effectively stop the seizure, or at least lessen the duration of the seizure.
So after all of that, it sounds like a great idea. It would potentially help with my seizures (if I'm a candidate) so why not? Well, it is a surgical procedure to implant it. From what I hear it's outpatient surgery, so it's not incredibly intense, but it's still surgery. As a coworker pointed out to me, removal of wisdom teeth is also outpatient surgery, but that hurts like hell for about a week.
Not only that, but it requires a new battery every 4 years. So that means another surgery every 4 years to replace the battery.
The question I have to answer for myself: Am I having enough seizures to do this? Is it worth it in the end? I know none of you can answer that for me, but I need to think about it. Before I try the VNS, I'd like to wait until the medical marijuana goes into effect and try that. We'll see though. It's been a long battle so far, and I'm not about to stop fighting.
PS - it's been about an hour since this seizure started, and it's still going.
Saturday, August 23, 2014
21 years at Camp EAGR
So this is it. As of this year, I am of legal drinking age... in camp years.
21 years at camp is a lot of time. 138 days. 3312 hours. (calculations based on 6 days per week as a camper - 9 years as a camper - and 7 days as a counselor - 12 years as a counselor)
As always there were some highlights and some not-so-highlights
The week started off interesting. When we were out the night before the kids showed up, someone said something like "Is that Randy approved?" and that simple statement sparked a thought in my head... I need a rubber stamp that says "Randy Approved."
The next day we went to Walmart (as always, since that's about all there is in Warsaw) and while looking around I saw an address stamp. Of course, since it's an address stamp for personal use, it was customizable. It came with 2 sets of letters (each set with about 5-6 of each letter) and a pair of tweezers to put the letters on with. Of course I bought it, made my "Randy Approved" stamp, and started stamping everyone at camp... and maybe some logs... and some other random stuff.
Some of you may remember that I set a goal earlier this year. I hadn't climbed the rock wall in a few years for various reasons: My leg hurt, I sprained my foot, etc. Bottom line... I was too out of shape to try, and I kept making excuses as to why I didn't want to climb. Well, despite many seizures in the days leading up to the wall (I'll get into that later) I climbed the wall! It was the easy wall, and my body was basically destroyed already from seizure soreness, and afterward I was even more sore and almost dead from climbing a wall that I *really* shouldn't have climbed... but I made it to the top of the wall. I was determined, and I forced myself to do it. And I succeeded.
This year there were A LOT of counselors having seizures. Seizures are normal at camp (after all, it's a camp for kids with epilepsy) and most of us counselors are former campers turned counselor, but this year we had an exceptional number of counselor seizures. I myself had 7 seizures in the last 5 days of camp. 2 on Tuesday, 2 on Wednesday, and 1 every day following. My cabin had the rock wall scheduled for Thursday morning, so by that time I had already had 4 seizures and the right side of my body was absolutely killing me. By the end of the week, my right tricep and my right shoulder were so sore that I was actually wincing in pain during every seizure. I think I took 3 Ativan pills throughout the week, which is just unheard of for me.
The week ended with what is going to sound terrible, but was actually an amazing moment. Before that though, some back story.
Throughout the week, there was a girl named Grace who was in Camp COAST (a new addition to Camp EAGR which is for adults 18-25ish) who was having a lot of seizures. I had been helping Grace's counselors with her seizures whenever I had a chance. At meals Grace's table was right next to mine, so I was at their table helping out whenever I could. Grace's seizures weren't violent or anything, she just kinda lost consciousness and would slowly tip sideways or backward. The hardest part of caring for her seizures was just getting her into a safe and comfortable position. And the fact that she had a lot of them made them difficult as well.
Near the end of the week (Saturday morning I think) I started having another seizure during a meal. Lauren (Grace's counselor) knows me well, and knew that I was seizing. As we were walking out of the dining hall, Grace started having a seizure near the bottom of the hill. I started helping Lauren, as I had been throughout the week, until Lauren yelled at me: "You can't take care of a seizure while you're having a seizure!" Of course I argued with her until her co-counselor came over and Lauren made me leave, A few minutes later, my seizure stopped... or so I though. My leg had stopped shaking, but the seizure was still active.
Thinking that the seizure was over, I went back over to Grace and started helping with her seizure. Again Lauren yelled at me, but allowed me to help after I showed her that both my arm and leg were under control. While Grace is on the ground, and I'm crouched down helping keep her in a safe position, my leg starts going again. Now I'm having a seizure while caring for a seizure, which is exactly what Lauren didn't want. Luckily, Lauren didn't know. As it started into my arm, it got a bit hard to hold Grace, but I fought through the pain until the seizure was over. When Grace came out of the seizure we got her up and away from the hill, and all was well again.
The amazing part of this moment was just realizing, more than ever, that I can do anything at any time. I literally cared for someone else while I was having a seizure. Most people would have walked away and not looked back, but I couldn't do that. I wouldn't let myself do that. I had spent so much time caring for Grace that week that I had to take care of her before myself, because I KNEW that I would be OK. I knew that she would be too but I still had to help, just in case. As terrible as it sounds, it was seriously one of the most amazing and memorable moments of my life. It's indescribable what I felt looking back at the situation.
So there it is. Camp 2014 in a nutshell. Of course, there's WAY more to tell than all of that, but I could spend days writing about both the ups and downs of camp every year. The "Randy Approved" stories alone could go on for hours.
21 years at camp is a lot of time. 138 days. 3312 hours. (calculations based on 6 days per week as a camper - 9 years as a camper - and 7 days as a counselor - 12 years as a counselor)
As always there were some highlights and some not-so-highlights
The week started off interesting. When we were out the night before the kids showed up, someone said something like "Is that Randy approved?" and that simple statement sparked a thought in my head... I need a rubber stamp that says "Randy Approved."
The next day we went to Walmart (as always, since that's about all there is in Warsaw) and while looking around I saw an address stamp. Of course, since it's an address stamp for personal use, it was customizable. It came with 2 sets of letters (each set with about 5-6 of each letter) and a pair of tweezers to put the letters on with. Of course I bought it, made my "Randy Approved" stamp, and started stamping everyone at camp... and maybe some logs... and some other random stuff.
Some of you may remember that I set a goal earlier this year. I hadn't climbed the rock wall in a few years for various reasons: My leg hurt, I sprained my foot, etc. Bottom line... I was too out of shape to try, and I kept making excuses as to why I didn't want to climb. Well, despite many seizures in the days leading up to the wall (I'll get into that later) I climbed the wall! It was the easy wall, and my body was basically destroyed already from seizure soreness, and afterward I was even more sore and almost dead from climbing a wall that I *really* shouldn't have climbed... but I made it to the top of the wall. I was determined, and I forced myself to do it. And I succeeded.
This year there were A LOT of counselors having seizures. Seizures are normal at camp (after all, it's a camp for kids with epilepsy) and most of us counselors are former campers turned counselor, but this year we had an exceptional number of counselor seizures. I myself had 7 seizures in the last 5 days of camp. 2 on Tuesday, 2 on Wednesday, and 1 every day following. My cabin had the rock wall scheduled for Thursday morning, so by that time I had already had 4 seizures and the right side of my body was absolutely killing me. By the end of the week, my right tricep and my right shoulder were so sore that I was actually wincing in pain during every seizure. I think I took 3 Ativan pills throughout the week, which is just unheard of for me.
The week ended with what is going to sound terrible, but was actually an amazing moment. Before that though, some back story.
Throughout the week, there was a girl named Grace who was in Camp COAST (a new addition to Camp EAGR which is for adults 18-25ish) who was having a lot of seizures. I had been helping Grace's counselors with her seizures whenever I had a chance. At meals Grace's table was right next to mine, so I was at their table helping out whenever I could. Grace's seizures weren't violent or anything, she just kinda lost consciousness and would slowly tip sideways or backward. The hardest part of caring for her seizures was just getting her into a safe and comfortable position. And the fact that she had a lot of them made them difficult as well.
Near the end of the week (Saturday morning I think) I started having another seizure during a meal. Lauren (Grace's counselor) knows me well, and knew that I was seizing. As we were walking out of the dining hall, Grace started having a seizure near the bottom of the hill. I started helping Lauren, as I had been throughout the week, until Lauren yelled at me: "You can't take care of a seizure while you're having a seizure!" Of course I argued with her until her co-counselor came over and Lauren made me leave, A few minutes later, my seizure stopped... or so I though. My leg had stopped shaking, but the seizure was still active.
Thinking that the seizure was over, I went back over to Grace and started helping with her seizure. Again Lauren yelled at me, but allowed me to help after I showed her that both my arm and leg were under control. While Grace is on the ground, and I'm crouched down helping keep her in a safe position, my leg starts going again. Now I'm having a seizure while caring for a seizure, which is exactly what Lauren didn't want. Luckily, Lauren didn't know. As it started into my arm, it got a bit hard to hold Grace, but I fought through the pain until the seizure was over. When Grace came out of the seizure we got her up and away from the hill, and all was well again.
The amazing part of this moment was just realizing, more than ever, that I can do anything at any time. I literally cared for someone else while I was having a seizure. Most people would have walked away and not looked back, but I couldn't do that. I wouldn't let myself do that. I had spent so much time caring for Grace that week that I had to take care of her before myself, because I KNEW that I would be OK. I knew that she would be too but I still had to help, just in case. As terrible as it sounds, it was seriously one of the most amazing and memorable moments of my life. It's indescribable what I felt looking back at the situation.
So there it is. Camp 2014 in a nutshell. Of course, there's WAY more to tell than all of that, but I could spend days writing about both the ups and downs of camp every year. The "Randy Approved" stories alone could go on for hours.
Friday, August 22, 2014
Too many seizures
I feel like I'm living on medicine lately. Like I need so many meds, just to still live a not-so-normal life.
Meds to try to prevent my seizures - Keppra and Lamictal
Rescue meds to stop the seizures when they're happening - Ativan
Pain meds to allow me to move my arm without pain - Ibuprofen
Magnesium to try to supplement everything else - it's been said to help migraines and/or seizure activity
And now I'm going to try to use my allergy meds as a supplement as well, since I think my allergies may be a trigger for some of these seizures.
It's exhausting - the seizures, the anticipation, the side effects... and just taking so many damn pills; average 12 pills daily assuming 0 Ativan, only 1 dose of Ibuprofen - 3 pills, 2 magnesium, 1 allergy pill, 3 Keppra and 3 Lamictal. Increase that to 13 if I take a short term allergy med along with a 24-hour one, which is usually what I do, 14-15 if I take Ativan for a seizure, and another 3 pills every extra Ibuprofen dose I need (I usually try to max out at twice a day) bringing our total to as many as 18 pills per day.
I had 13 seizures in 8 days, spent an entire day sleeping (which led to no seizures that day) followed by 2 more. This week... 3 on Monday, 3 on Tuesday, Wednesday was sleep day, then 2 more on Thursday. 8 seizures in (effectively) 3 days. Straight up exhausting. And all of this started during camp, which makes it even more exhausting.
My doctor has been out of the office all of this week and returns today (Friday.) I have an appointment with him for Monday, but I need things to change ASAP. I need yet another medicine, I need to know what caused all of these, I need more rescue meds, I need these to stop - or at least slow downs - and I need answers. 29 years with no answers... I need something.
Meds to try to prevent my seizures - Keppra and Lamictal
Rescue meds to stop the seizures when they're happening - Ativan
Pain meds to allow me to move my arm without pain - Ibuprofen
Magnesium to try to supplement everything else - it's been said to help migraines and/or seizure activity
And now I'm going to try to use my allergy meds as a supplement as well, since I think my allergies may be a trigger for some of these seizures.
It's exhausting - the seizures, the anticipation, the side effects... and just taking so many damn pills; average 12 pills daily assuming 0 Ativan, only 1 dose of Ibuprofen - 3 pills, 2 magnesium, 1 allergy pill, 3 Keppra and 3 Lamictal. Increase that to 13 if I take a short term allergy med along with a 24-hour one, which is usually what I do, 14-15 if I take Ativan for a seizure, and another 3 pills every extra Ibuprofen dose I need (I usually try to max out at twice a day) bringing our total to as many as 18 pills per day.
I had 13 seizures in 8 days, spent an entire day sleeping (which led to no seizures that day) followed by 2 more. This week... 3 on Monday, 3 on Tuesday, Wednesday was sleep day, then 2 more on Thursday. 8 seizures in (effectively) 3 days. Straight up exhausting. And all of this started during camp, which makes it even more exhausting.
My doctor has been out of the office all of this week and returns today (Friday.) I have an appointment with him for Monday, but I need things to change ASAP. I need yet another medicine, I need to know what caused all of these, I need more rescue meds, I need these to stop - or at least slow downs - and I need answers. 29 years with no answers... I need something.
Tuesday, July 1, 2014
Hope
I posted this link on Facebook the yesterday and mentioned that I think #4 is only partly correct:
http://www.huffingtonpost.com/ilana-jacqueline/personal-health-_b_5482294.html
A friend who also suffers from a chronic condition shared it as well, and he agreed with my analysis. (I say condition because neither of them are an illness. We aren't "ill" in any way, we have a condition.) He added his own title comment, and I commented on his post and said: "It's a fight that you can never stop fighting, and if you lose the consequences are dire."
After a post that I just made this morning, I thought back to this article. The fight is not always physical, and I think this article (linked above) suggests that it is. In fact, 90% of the time the fight is not physical. More often the fight is mental and/or emotional. People are often asking me "how are you so calm about this!?" Others are freaking out about my seizures and I'm all like "meh." Because I have to be calm about it, and just accept it, in order to win the fight. I have to always think that I can go longer without a seizure. I have to do what needs to be done in order to live on to be a better person every day.
Today I posted that I have been 12 days seizure free and that I go to camp in 40 days. At the end I said that I hope to be 52 days seizure free when I get to camp. This is the thought process that I must have. I can't say "I hope to be at least 12 days seizure free when I get there!" Because that is not my hope. My hope is that I never have a seizure again. Is it a realistic possibility? No. But I can always hope.
I am not a religious person, so I don't believe in "faith" that most people talk about and believe in. Faith is a blind belief in something that cannot be proven or disproven. It is trust in something that you have been told even though you have no reason to trust it. Faith is something that people use to force themselves to believe something that they wouldn't otherwise believe.
I do, however, believe in hope. Hope is a state of mind. Hope is something empowering, hope is positive thinking, and positive thinking can have both mental and physical benefits. For some people faith leads to hope, and I therefore I cannot fault people who have faith. If your faith leads to hope then keep having faith, because when you lose hope you lose everything.
Just as I am not religious, I am also not an optimist, or a pessimist; I am a realist. I look at things as how they are, not how I want them to be. The glass isn't half full or half empty, the glass has water in it. This is why I say that it is not realistic to think that I will never have another seizure. It is an unrealistic thought, because I have had epilepsy all of the almost 30 years that I have been alive. But while I am realistic about the matter, it is absolutely necessary to hope that I won't have any more seizures.
http://www.huffingtonpost.com/ilana-jacqueline/personal-health-_b_5482294.html
A friend who also suffers from a chronic condition shared it as well, and he agreed with my analysis. (I say condition because neither of them are an illness. We aren't "ill" in any way, we have a condition.) He added his own title comment, and I commented on his post and said: "It's a fight that you can never stop fighting, and if you lose the consequences are dire."
After a post that I just made this morning, I thought back to this article. The fight is not always physical, and I think this article (linked above) suggests that it is. In fact, 90% of the time the fight is not physical. More often the fight is mental and/or emotional. People are often asking me "how are you so calm about this!?" Others are freaking out about my seizures and I'm all like "meh." Because I have to be calm about it, and just accept it, in order to win the fight. I have to always think that I can go longer without a seizure. I have to do what needs to be done in order to live on to be a better person every day.
Today I posted that I have been 12 days seizure free and that I go to camp in 40 days. At the end I said that I hope to be 52 days seizure free when I get to camp. This is the thought process that I must have. I can't say "I hope to be at least 12 days seizure free when I get there!" Because that is not my hope. My hope is that I never have a seizure again. Is it a realistic possibility? No. But I can always hope.
I am not a religious person, so I don't believe in "faith" that most people talk about and believe in. Faith is a blind belief in something that cannot be proven or disproven. It is trust in something that you have been told even though you have no reason to trust it. Faith is something that people use to force themselves to believe something that they wouldn't otherwise believe.
I do, however, believe in hope. Hope is a state of mind. Hope is something empowering, hope is positive thinking, and positive thinking can have both mental and physical benefits. For some people faith leads to hope, and I therefore I cannot fault people who have faith. If your faith leads to hope then keep having faith, because when you lose hope you lose everything.
Just as I am not religious, I am also not an optimist, or a pessimist; I am a realist. I look at things as how they are, not how I want them to be. The glass isn't half full or half empty, the glass has water in it. This is why I say that it is not realistic to think that I will never have another seizure. It is an unrealistic thought, because I have had epilepsy all of the almost 30 years that I have been alive. But while I am realistic about the matter, it is absolutely necessary to hope that I won't have any more seizures.
Saturday, June 14, 2014
Seizure weekend
The past couple of days have not been fun.
Thursday
Thursday I went to lunch with 3 coworkers. Half-way through lunch (around 12:30) I started into a partial seizure. At first it was nothing out of the ordinary. My leg was twitching slightly, my head felt a bit weird, but nothing too bad.
The walk from Dinosaur BBQ back to the office was a bit rough, because of the leg, but not too bad. I got back to the office and sat down at my desk. Soon after I got to my desk my leg started going a little more intense. It lasted a while then calmed down. A few minutes later it started back up again. I was doing as much work as I could throughout this whole thing - answering questions for my interns, helping them figure out some issues, etc.
At 2:30 I was supposed to meet with the server team to talk about something that we had discussed at our larger Monday morning meeting. At this point my leg had stopped, and I could tell that the seizure had subsided. I knew at the time what I was supposed to be talking about at the meeting, but soon after I got to the meeting I forgot what we were going to talk about. Another seizure had started. The server team had something dropped on them last minute, and they were talking about that when I got there. Nobody remembered why I was there, and I still don't recall.
The seizure that started during the meeting was in my arm, as it has been occasionally before. It got pretty intense fairly quickly, so around 3:15 I told my boss that I was going home to rest. The seizure stopped shortly after getting home, and I slept most of the day.
Friday
Friday morning I woke up at 6:30, as I always do, knowing that I was not likely going to be in any shape to go to work. Sure enough, I was still exhausted from the 3 hour seizure(s) the day before, and I had a headache as I often do after a seizure. Usually these headaches last for quite some time, and will not subside unless I sleep them off.
Shortly after waking up I sent a text to my boss, and my team, telling them that I was OK (since they had witnessed the seizures the day before) but that I would not be in because I was still tired and had a headache that was not likely to go away any time soon.
At 7:15 another seizure started; Again it was in my arm. It's not normal for me to have this many seizures in such a short time, so I sent a text to my mom telling her what was going to the hospital and quickly walked across the street to the hospital. (Yes, luckily I just moved almost directly across the street from a hospital.) My mom was going to pick me up and drive me to the hospital, but my arm was going so intensely that I didn't want to wait for her.
I got to the hospital, went through the normal stuff (gave them my name, birthday, etc.) and went into a room to be taken care of. In the room, they took my vitals - blood pressure, temperature, pulse - most of which had to be done on my left arm, since the right one was shaking violently. They asked if I was in any pain - which I was, but mostly from the sore muscles from the violent shaking - and asked how much on a scale of 1-10. They asked again why I was there, at which point I gave them more information about the situation. They asked about allergies, of which I only have seasonal allergies. All of the normal stuff when going to the hospital (unfortunately, I know this procedure all too well.)
I was taken to a bed, where I was given an IV (also in my left arm.) Shortly after, unrelated to the IV, I started feeling some pretty intense pain in my right arm from the muscles contracting and expanding so quickly and violently. (It didn't help that I was in the gym on Tuesday working my arms.) Eventually it got to the point where it was not only my arm, but my side, (abs, lats, etc.) my shoulder, and my bicep - which I know is part of my arm, but it's usually just my hand and forearm; It usually doesn't go up past my elbow. It got so violent that my mom actually took a video of it on her phone.
It was by far the most violent and painful partial seizure that I have ever experienced. At 8:00am, 45 minutes after it started, the seizure finally stopped. For quite some time after it ended I was still wincing in pain from the seizure, and was extremely tired. I sat with my eyes closed, even answering questions from the nurses and doctors without opening my eyes.
Eventually my arm felt almost like it was not even there, When I went to move it it felt almost weightless, but at the same time was extremely sore. If I bent it too far, or straightened it too much, it would hurt, so I had to let it sit at a very specific angle.
I had told the nurse in the first examination room that I was starting to wean off of the Keppra that I have been taking, so they later gave me 1500mg of liquid Keppra, to hopefully prevent further seizures, and gave me a prescription for Ativan in case I had another extreme seizure. For those who don't know, Ativan is used an emergency drug for seizure that last extremely long and/or are extremely violent. My prescription says that I can "take 1 tablet every hour as needed for seizure" with a "maximum daily dose of 3 tablets." If I am still having issues after using those 3 tablets, I am to return to the ER. (Hopefully I don't need any of them.) The doctor also told me that it will make me extremely tired if I need to use it.
Just like Thursday, I again slept most of the day, waking up every couple of hours to eat and because my body isn't used to being asleep during the day. (Not since I stopped working at the hospital at least.) Later in the evening, somewhere around 8pm, I had another small and short seizure that only affected my foot and lower leg. It only lasted 5 minutes or so, maybe less, so it wasn't too bad.
Right now (early Saturday morning) the entire upper right quarter of my body is sore. My side, my arm, my shoulder, and even my back. My leg is a bit sore from Thursday's seizure(s), and the small seizure last night, but not nearly as bad as my upper body.
Friday Morning's seizure:
Going Forward
Now I am supposed to return to my previous dose of 2000mg of Keppra each day, and I need to follow up with my neurologist this coming week. From talking to him in the past, he wants me to try a medicine called Vimpat next, but after looking into it I found that it is a controlled substance. From what I've heard, a paper prescription is required for every refill of a controlled substance, which would mean that I need to physically go to his office every month to get my refills.
We have talked about some other options in the past. He mentioned Topamax, but I have heard nothing but bad things about Topamax, so that's another one that I don't want to try unless absolutely necessary. He has also mentioned Zonegran, which some of my friends are on, and I want to try that first. Last time we talked he was pretty much set on Vimpat, but he usually listens to what I want so hopefully Zonegran will be my next try.
Thursday
Thursday I went to lunch with 3 coworkers. Half-way through lunch (around 12:30) I started into a partial seizure. At first it was nothing out of the ordinary. My leg was twitching slightly, my head felt a bit weird, but nothing too bad.
The walk from Dinosaur BBQ back to the office was a bit rough, because of the leg, but not too bad. I got back to the office and sat down at my desk. Soon after I got to my desk my leg started going a little more intense. It lasted a while then calmed down. A few minutes later it started back up again. I was doing as much work as I could throughout this whole thing - answering questions for my interns, helping them figure out some issues, etc.
At 2:30 I was supposed to meet with the server team to talk about something that we had discussed at our larger Monday morning meeting. At this point my leg had stopped, and I could tell that the seizure had subsided. I knew at the time what I was supposed to be talking about at the meeting, but soon after I got to the meeting I forgot what we were going to talk about. Another seizure had started. The server team had something dropped on them last minute, and they were talking about that when I got there. Nobody remembered why I was there, and I still don't recall.
The seizure that started during the meeting was in my arm, as it has been occasionally before. It got pretty intense fairly quickly, so around 3:15 I told my boss that I was going home to rest. The seizure stopped shortly after getting home, and I slept most of the day.
Friday
Friday morning I woke up at 6:30, as I always do, knowing that I was not likely going to be in any shape to go to work. Sure enough, I was still exhausted from the 3 hour seizure(s) the day before, and I had a headache as I often do after a seizure. Usually these headaches last for quite some time, and will not subside unless I sleep them off.
Shortly after waking up I sent a text to my boss, and my team, telling them that I was OK (since they had witnessed the seizures the day before) but that I would not be in because I was still tired and had a headache that was not likely to go away any time soon.
At 7:15 another seizure started; Again it was in my arm. It's not normal for me to have this many seizures in such a short time, so I sent a text to my mom telling her what was going to the hospital and quickly walked across the street to the hospital. (Yes, luckily I just moved almost directly across the street from a hospital.) My mom was going to pick me up and drive me to the hospital, but my arm was going so intensely that I didn't want to wait for her.
I got to the hospital, went through the normal stuff (gave them my name, birthday, etc.) and went into a room to be taken care of. In the room, they took my vitals - blood pressure, temperature, pulse - most of which had to be done on my left arm, since the right one was shaking violently. They asked if I was in any pain - which I was, but mostly from the sore muscles from the violent shaking - and asked how much on a scale of 1-10. They asked again why I was there, at which point I gave them more information about the situation. They asked about allergies, of which I only have seasonal allergies. All of the normal stuff when going to the hospital (unfortunately, I know this procedure all too well.)
I was taken to a bed, where I was given an IV (also in my left arm.) Shortly after, unrelated to the IV, I started feeling some pretty intense pain in my right arm from the muscles contracting and expanding so quickly and violently. (It didn't help that I was in the gym on Tuesday working my arms.) Eventually it got to the point where it was not only my arm, but my side, (abs, lats, etc.) my shoulder, and my bicep - which I know is part of my arm, but it's usually just my hand and forearm; It usually doesn't go up past my elbow. It got so violent that my mom actually took a video of it on her phone.
It was by far the most violent and painful partial seizure that I have ever experienced. At 8:00am, 45 minutes after it started, the seizure finally stopped. For quite some time after it ended I was still wincing in pain from the seizure, and was extremely tired. I sat with my eyes closed, even answering questions from the nurses and doctors without opening my eyes.
Eventually my arm felt almost like it was not even there, When I went to move it it felt almost weightless, but at the same time was extremely sore. If I bent it too far, or straightened it too much, it would hurt, so I had to let it sit at a very specific angle.
I had told the nurse in the first examination room that I was starting to wean off of the Keppra that I have been taking, so they later gave me 1500mg of liquid Keppra, to hopefully prevent further seizures, and gave me a prescription for Ativan in case I had another extreme seizure. For those who don't know, Ativan is used an emergency drug for seizure that last extremely long and/or are extremely violent. My prescription says that I can "take 1 tablet every hour as needed for seizure" with a "maximum daily dose of 3 tablets." If I am still having issues after using those 3 tablets, I am to return to the ER. (Hopefully I don't need any of them.) The doctor also told me that it will make me extremely tired if I need to use it.
Just like Thursday, I again slept most of the day, waking up every couple of hours to eat and because my body isn't used to being asleep during the day. (Not since I stopped working at the hospital at least.) Later in the evening, somewhere around 8pm, I had another small and short seizure that only affected my foot and lower leg. It only lasted 5 minutes or so, maybe less, so it wasn't too bad.
Right now (early Saturday morning) the entire upper right quarter of my body is sore. My side, my arm, my shoulder, and even my back. My leg is a bit sore from Thursday's seizure(s), and the small seizure last night, but not nearly as bad as my upper body.
Friday Morning's seizure:
Going Forward
Now I am supposed to return to my previous dose of 2000mg of Keppra each day, and I need to follow up with my neurologist this coming week. From talking to him in the past, he wants me to try a medicine called Vimpat next, but after looking into it I found that it is a controlled substance. From what I've heard, a paper prescription is required for every refill of a controlled substance, which would mean that I need to physically go to his office every month to get my refills.
We have talked about some other options in the past. He mentioned Topamax, but I have heard nothing but bad things about Topamax, so that's another one that I don't want to try unless absolutely necessary. He has also mentioned Zonegran, which some of my friends are on, and I want to try that first. Last time we talked he was pretty much set on Vimpat, but he usually listens to what I want so hopefully Zonegran will be my next try.
Friday, May 23, 2014
More medicine changes
689 days ago - July 3rd 2012 - I had my first ever (recognized) partial seizure. Soon after that my doctor and I started messing with my meds. Here we are, almost 2 years later, still making changes.
Almost about a year ago I went to my doctor telling him that I was having horrible emotional side effects from the Keppra that he put me on and said that I would like to try Lamictal instead, since that was the other medicine that he recommended. So I, very slowly, started taking Lamictal and building up to an acceptable level. 3 blood tests and 4 months later, I got to that acceptable level.
As we were doing the change he told me to try being on both for a while as Lamictal often offsets the side effects of Keppra. So I did. I tried it for a while and still felt off. I was more tired than normal and had problems thinking clearly - as I noticed about Tegretol after coming off of it. Exactly 1 month after starting the full dosage, he changed the way I take the medicine - from 1 Lamical in the morning and 1 at night (1x1) and 1x1 with Keppra, to .5x1.5 Lamictal and 1x1 Keppra.
Changing the dosing times made me feel more of the emotional effects that I had felt prior, so a few months into that dosage I switch myself to 1x1 Lamictal and .5x1.5 Keppra. The emotional side effects lessened, but they were/are still there.
We had set an appointment to talk today, at which I explained my situation - I changed my dosage again, and am still having seizure, but much less often (I'm at 23 days right now, which is near a record for 2014.) He mentioned trying to come off the Keppra and possibly trying Vimpat - or not adding Vimpat and just coming off of the Keppra. I agreed, stating that the reason that I went on the Lamictal was to come off of the Keppra, but I would rather not add anything else quite yet. I had actually thought about this while driving to the appointment... what is the next step?
So that's our current plan - I'm lessening the Keppra, v e r y s l o w l y. lowering by a half pill per day at one month intervals (.5x1 today, .5x.5 in 1 month, etc.) As always, this is a bit scary and a bit exciting. I'm looking forward to getting rid of some of the side effects but, as I did when coming off of the Tegretol, I'm a bit scared of having more seizures, or starting to have Tonic Clonic seizures again. The other problem is that this is, once again, a 4-month process, so I won't really know the outcome for quite some time.
I'll try to keep you all posted.
Almost about a year ago I went to my doctor telling him that I was having horrible emotional side effects from the Keppra that he put me on and said that I would like to try Lamictal instead, since that was the other medicine that he recommended. So I, very slowly, started taking Lamictal and building up to an acceptable level. 3 blood tests and 4 months later, I got to that acceptable level.
As we were doing the change he told me to try being on both for a while as Lamictal often offsets the side effects of Keppra. So I did. I tried it for a while and still felt off. I was more tired than normal and had problems thinking clearly - as I noticed about Tegretol after coming off of it. Exactly 1 month after starting the full dosage, he changed the way I take the medicine - from 1 Lamical in the morning and 1 at night (1x1) and 1x1 with Keppra, to .5x1.5 Lamictal and 1x1 Keppra.
Changing the dosing times made me feel more of the emotional effects that I had felt prior, so a few months into that dosage I switch myself to 1x1 Lamictal and .5x1.5 Keppra. The emotional side effects lessened, but they were/are still there.
We had set an appointment to talk today, at which I explained my situation - I changed my dosage again, and am still having seizure, but much less often (I'm at 23 days right now, which is near a record for 2014.) He mentioned trying to come off the Keppra and possibly trying Vimpat - or not adding Vimpat and just coming off of the Keppra. I agreed, stating that the reason that I went on the Lamictal was to come off of the Keppra, but I would rather not add anything else quite yet. I had actually thought about this while driving to the appointment... what is the next step?
So that's our current plan - I'm lessening the Keppra, v e r y s l o w l y. lowering by a half pill per day at one month intervals (.5x1 today, .5x.5 in 1 month, etc.) As always, this is a bit scary and a bit exciting. I'm looking forward to getting rid of some of the side effects but, as I did when coming off of the Tegretol, I'm a bit scared of having more seizures, or starting to have Tonic Clonic seizures again. The other problem is that this is, once again, a 4-month process, so I won't really know the outcome for quite some time.
I'll try to keep you all posted.
Monday, May 19, 2014
Mistakes
Everyone makes mistakes. It's a fact of life. Most people learn from those mistakes. They analyse the results of those mistakes, and change the outcome of similar situations that may occur in the future.
Generally, I am one of the best people around when it comes to this cycle of making mistakes, learning, and changing. But there is one place in my life that I have always failed to correct my mistakes. One thing that I've continually failed to change my behavior based on the outcome of previous encounters, and recently I have been thinking about one particular failure to adapt. I've had many chances to correct my mistake, and each time I just continued as if nothing had changed. But things do change, and sometimes you are given multiple chances for a reason. Unfortunately, those chances eventually stop coming, and that is when you truly recognize the consequences of your decisions.
My chances to correct my mistakes are finally coming to an end, and I don't know what to think about it. I am seeing things as they could have been, and am second guessing my actions every day. All along people told me that I was being stupid, and asking "why?" (or more like "why not?") and I never listened. I never had a good answer to "why?" and that should have been a clue to me that I was just being stupid, being stubborn. I've tried, so many times, to tell myself that I had a reason for my decision (or indecision, as it may be.) I always had a reason, but never a good reason. Now that I've run out of reasons, I don't know what to do except to accept things as they are and try not to let it get to me too much. I can't change things now, so even though I've run out of bad reasons to continue to make a bad decision, I guess it's time to just sit back and watch the party.
I know that people tend to hate ambiguous posts, and that some people think that it's a cry for attention. Truth is, I just need to get some things off of my chest. A lot of you have no idea what this post means, or what it refers to, but some of the people who are closest to me will understand. There is at least one person who will likely read this and will understand, and that person is the one who needs to understand, because that person never did understand my indecisiveness. Now I guess I'm the one who doesn't understand myself.
The great white buffalo.
Generally, I am one of the best people around when it comes to this cycle of making mistakes, learning, and changing. But there is one place in my life that I have always failed to correct my mistakes. One thing that I've continually failed to change my behavior based on the outcome of previous encounters, and recently I have been thinking about one particular failure to adapt. I've had many chances to correct my mistake, and each time I just continued as if nothing had changed. But things do change, and sometimes you are given multiple chances for a reason. Unfortunately, those chances eventually stop coming, and that is when you truly recognize the consequences of your decisions.
My chances to correct my mistakes are finally coming to an end, and I don't know what to think about it. I am seeing things as they could have been, and am second guessing my actions every day. All along people told me that I was being stupid, and asking "why?" (or more like "why not?") and I never listened. I never had a good answer to "why?" and that should have been a clue to me that I was just being stupid, being stubborn. I've tried, so many times, to tell myself that I had a reason for my decision (or indecision, as it may be.) I always had a reason, but never a good reason. Now that I've run out of reasons, I don't know what to do except to accept things as they are and try not to let it get to me too much. I can't change things now, so even though I've run out of bad reasons to continue to make a bad decision, I guess it's time to just sit back and watch the party.
I know that people tend to hate ambiguous posts, and that some people think that it's a cry for attention. Truth is, I just need to get some things off of my chest. A lot of you have no idea what this post means, or what it refers to, but some of the people who are closest to me will understand. There is at least one person who will likely read this and will understand, and that person is the one who needs to understand, because that person never did understand my indecisiveness. Now I guess I'm the one who doesn't understand myself.
The great white buffalo.
Wednesday, March 26, 2014
Helpless
Today is March 26th 2014. March 26th - Purple day. A day that I usually celebrate my epilepsy, spread the word about epilepsy, think of the people who I have met, and the good things that have come from the disorder that most people don't understand, or have no positive memories of.
Today was different though. Today I started to feel helpless.
For the first time in a long time, possibly ever, I am starting to feel comfortable in my own body. I'm getting back into shape and I am gaining confidence in myself that I never had. I feel proud of the things that I have accomplished - physical accomplishments, professional accomplishments, personal accomplishments.
But as I start to feel comfortable in my body, my body is falling apart. Not because I'm getting older. Not because I'm letting myself go, or have let myself go. My body is finally starting to fall apart because of my seizures. Because of the 34 partial seizures (or possibly more if I missed some) that I've had in the past 10 months.
My right calf is often hard to walk on. My right forearm actually hurt today (Wednesday) from a seizure that I had on Saturday. It was quite possibly the strongest partial that I've had to date. While it was happening, I tried to show a friend how I can stop my leg from shaking during these seizures... but I couldn't.
Not only was it immensely intense, but it was at a party. A party celebrating a 30th birthday. A party at which I knew nobody prior to that night except the host.
As the seizure was happening a handful of people sat there watching me, wondering what was going on, and surely feeling just as helpless as I was. They wanted to help me, I could see it in their faces, but they didn't know what to do. They didn't even know how to talk to me about it... but they did. After it was over and I got up to use the bathroom.
When I returned from the bathroom, they asked me "what happened? Are you alright?" And of course I told them the truth. "That was what's called a simple partial seizure." And as I expected, they continued to ask questions - what does that mean? Have you had them all your life? How often do they happen? Etc. One of them even said that she thought that it was just a muscle spasm, which is probably what I would have thought had I been in her position.
I have no problem explaining my seizures, talking about epilepsy, educating people... in fact normally I enjoy it. But this time it was a bit awkward. Trying to explain to a couple of people that I just met that night what they just witnessed... while I'm still in the seizure.
I knew that the seizure wasn't done when I heard my voice. I started explaining everything to them, but my speech was broken. My voice was almost like a scratched record. I was still breathing fairly heavily. I could barely look at them because I could feel my eyes doing whatever it is that they do during my seizures. But they still asked their questions, and I still answered. I powered through it as I have always done with everything in life.
The problem is - I'm getting sick of having to power through things. And for the first time ever, I can say that I have no control over the vow that I made to myself years ago... I am allowing my seizures to stop me from doing things. I'm trying not to let them control me, but I can't stop it. My leg won't let me do some things.
I'm not normally a runner, but I have been trying to run and I physically can't. Not because I am out of shape, not because my lung capacity isn't good enough, not because I lack the ambition, not because I don't have somewhere to run... in fact I have everything necessary. But my leg physically can't handle it because of the seizures. And it makes me feel helpless. It makes me feel like I want to cry. It makes me angry. It makes me feel defeated. It makes me feel a need to push harder... but I can't! Pushing harder would just make it worse. Which in turn makes all of those feelings even stronger.
For the first time ever, I feel helpless. I feel like no matter what I do I can't repair my body. No matter how hard I try to get stronger I just get weaker, or at best stay the same. For the first time ever I feel like my seizures are taking over my life, and it's getting hard to fight back. I'm trying my best to not give up. Trying to keep fighting no matter how hard it is. But I feel like I'm starting to lose the battle. I put on a strong face, but there are times that I'm dying inside despite the facade.
As always, I will keep going. I will keep pushing forward. I will keep doing whatever is necessary. But it's not easy. And I'm trying not to let it break me down.
Today was different though. Today I started to feel helpless.
For the first time in a long time, possibly ever, I am starting to feel comfortable in my own body. I'm getting back into shape and I am gaining confidence in myself that I never had. I feel proud of the things that I have accomplished - physical accomplishments, professional accomplishments, personal accomplishments.
But as I start to feel comfortable in my body, my body is falling apart. Not because I'm getting older. Not because I'm letting myself go, or have let myself go. My body is finally starting to fall apart because of my seizures. Because of the 34 partial seizures (or possibly more if I missed some) that I've had in the past 10 months.
My right calf is often hard to walk on. My right forearm actually hurt today (Wednesday) from a seizure that I had on Saturday. It was quite possibly the strongest partial that I've had to date. While it was happening, I tried to show a friend how I can stop my leg from shaking during these seizures... but I couldn't.
Not only was it immensely intense, but it was at a party. A party celebrating a 30th birthday. A party at which I knew nobody prior to that night except the host.
As the seizure was happening a handful of people sat there watching me, wondering what was going on, and surely feeling just as helpless as I was. They wanted to help me, I could see it in their faces, but they didn't know what to do. They didn't even know how to talk to me about it... but they did. After it was over and I got up to use the bathroom.
When I returned from the bathroom, they asked me "what happened? Are you alright?" And of course I told them the truth. "That was what's called a simple partial seizure." And as I expected, they continued to ask questions - what does that mean? Have you had them all your life? How often do they happen? Etc. One of them even said that she thought that it was just a muscle spasm, which is probably what I would have thought had I been in her position.
I have no problem explaining my seizures, talking about epilepsy, educating people... in fact normally I enjoy it. But this time it was a bit awkward. Trying to explain to a couple of people that I just met that night what they just witnessed... while I'm still in the seizure.
I knew that the seizure wasn't done when I heard my voice. I started explaining everything to them, but my speech was broken. My voice was almost like a scratched record. I was still breathing fairly heavily. I could barely look at them because I could feel my eyes doing whatever it is that they do during my seizures. But they still asked their questions, and I still answered. I powered through it as I have always done with everything in life.
The problem is - I'm getting sick of having to power through things. And for the first time ever, I can say that I have no control over the vow that I made to myself years ago... I am allowing my seizures to stop me from doing things. I'm trying not to let them control me, but I can't stop it. My leg won't let me do some things.
I'm not normally a runner, but I have been trying to run and I physically can't. Not because I am out of shape, not because my lung capacity isn't good enough, not because I lack the ambition, not because I don't have somewhere to run... in fact I have everything necessary. But my leg physically can't handle it because of the seizures. And it makes me feel helpless. It makes me feel like I want to cry. It makes me angry. It makes me feel defeated. It makes me feel a need to push harder... but I can't! Pushing harder would just make it worse. Which in turn makes all of those feelings even stronger.
For the first time ever, I feel helpless. I feel like no matter what I do I can't repair my body. No matter how hard I try to get stronger I just get weaker, or at best stay the same. For the first time ever I feel like my seizures are taking over my life, and it's getting hard to fight back. I'm trying my best to not give up. Trying to keep fighting no matter how hard it is. But I feel like I'm starting to lose the battle. I put on a strong face, but there are times that I'm dying inside despite the facade.
As always, I will keep going. I will keep pushing forward. I will keep doing whatever is necessary. But it's not easy. And I'm trying not to let it break me down.
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