I'm sorry if this has been discussed before, but I can't find anyone that I can relate to. This is my first post on this forum, and perhaps I can find others with similar situations before I ctb.
I'm 26, and I have temporal lobe epilepsy. My first major tonic-clonic (grand mal) seizure was around the age of 18. They worsened until I had one at 20 that required me to be airlifted, intubated for weeks, and left me with brain damage in the form of a scar on one side of my temporal lobe.
Now because of the damage I have nearly zero short term memory and extreme difficulty retaining information. Even best friends that I have known for over a decade can suddenly become strangers. I can be told a simple task and within seconds I forget it. I have to be introduced to people a dozen+ times before I can even recognize their face - let alone their name. I can't even remember my own phone number which I've had for years. When I'm having a conversation I have to stop every minute or two to have the other person completely summarize the whole thing just so I can attempt to remember what is being talked about and (hopefully) try to make a response before forgetting what we're talking about again.
I can't drive, or even walk to the store alone. The last time I walked to the grocery store (less than 0.2 miles away) I had a seizure on the side of the street. Luckily I didn't fall into traffic, and I was even luckier that someone driving by called 911 while I flopped like a contorted maniac on the ground, hitting my head, and foaming at the mouth. In situations like that I have an identification bracelet I have to wear 24/7 on my wrist that gives basic information.... and frankly wearing it makes me feel like a branded farm animal.
The feeling of having a seizure is petrifying, and it's not just the convulsions. I'm unconscious for that. What's scary is when I feel it coming on beforehand (called an "aura") and have to sit there thinking to myself - "When am I going to go? How long will I convulse? Will I wake up in the hospital? Will I wake up at all?" - while I'm simultaneously feeling my brain shut down before the conlvulsions start. I start getting a sensation of intense deja-vu and a fight or flight response with my brain saying 'This has happened before, whatever is is! Freak out! Your brain is shutting down! PANIC!' which can last several minutes before the convulsions.
Then afterwards - usually several hours after - I wake up with zero recollection of anything, with a mess to be cleaned up (think - complete loss of bodily control), and intense pain similar to pulling all the muscles in my body simultaneously, which can last several days. My doctor(s) try to give me narcotics for the pain but they don't help, can increase risk of seizures, and generally make me sick. I've broken so many bones on top of general injuries, but they're limited to what they can even do surgically because of the risks involved with my epilepsy.
I can't take a shower alone. I need to have someone outside the bathroom in case I have a seizure. The last time I took the risk of showering alone I ended being found on the floor, passed out after a seizure, with cold water running over me. Based on the timing I was likely unconscious for over an hour. Luckily (or perhaps not so luckily) I was in a position where I didn't asphyxiate during the post-seizure state (post-ictal) which can leave me unconscious and completely un-wakeable for hours.
I shouldn't even be cooking food on the stove if I want to be completely safe, because I've had a seizure while I was cooking and almost burned the house down!
If I do have a seizure that lasts too long I have to get a large dose of midazolam (a benzo - similar to xanax, klonopin, ativan, etc.) sprayed up my nose or given to me as a shot which puts me in what is essentially a controlled coma. So I have to make sure no matter where I go that I have it accessible and have someone that knows how to administer it. On that note - I have to teach literally everyone that spends time with me alone how to use the spray which in and of itself is embarassing.
The list of medications I have gone through in the past that either worked for a period of time then stopped, never worked at all, or were completely intolerable is mind blowing. The list of medications I take now which "work" (meaning the seizures are "minimized" as best as possible) is mind blowing. The current ones leave me sleeping 14+ hours a day, losing my hair, and completely out of it/intoxicated the 8 hours a day I am able to stay semi-awake.
Every morning I need to have an RN come check on me to make sure I haven't had a seizure in my sleep, and not to be dramatic, that I'm alive. On the note of seizures in my sleep - I even have to go to bed with Depends adult diapers on because of all the mattresses I've ruined from incontinence during nocturnal seizures.
I've been trying to find a way to obtain my own apartment using my liberal state's numerous (but often useless) social services. Unfortunately I keep hitting dead ends (after 6 years) due to extensive waiting lists and hoops that have to be jumped through. I receive disability, but other than that I have zero income so I'm stuck living in a little run down inlaw apartment off my fathers house that's missing windows and isn't heated. It's pretty cold where I live. Negative 10-15 degrees last week for a couple nights. Leaving my apartment at a maximum of 40 degrees during the day, and 30 degrees at night. With multiple space heaters running.
Oh, you know what just makes it all even BETTER? I'm gay! Lovely. Even living in a very liberal area, I find myself facing so much prejudice and hate from those around me. Some people can be blunt and cruel, but what hurts more are the "small" comments/insults that build up. Plus, honestly, I just feel lonely seeing all of my heterosexual peers in relationships while I sit here alone as ever. And the gay community (at least gay men) can be cruel and vain, so I've had guys explicitly tell me they have no interest in me simply because of my disability and no other discussion.
Much of my extended family has an issue with my sexuality as well - and they have no problem vocalizing their opinions about my "perversion" and "path to hell."
Sometimes I find myself sitting in silence going through all the little things people have said or insinuated and thinking about how much I agree with them. I AM a stupid, useless, ugly biological mistake.
My parents seperated when I was around 12, which was ugly, and my father took custody of me immediately. Why? Because my mother is a raging alcoholic with serious mental health issues that had/have been left untreated for decades. She drinks uncontrollably and was very physically abusive. VERY physically abusive. Her and I didn't speak until I was an adult and was old enough to understand her drinking problem, but it's incredibly difficult to talk to her, let alone spend time with her, because she's drunk before noon every day. With her increasing blood alcohol content comes increasingly cruel statements and malicious actions. One simple example: Giving me a ride to a doctor multiple cities away last week, then calling, full of laughter, to tell me that she purposefully left me stranded because she perceived it as funny.
I couldn't even get through high school because of all the bullying due to me being a gay outcast, which led me to drop out on my 16th birthday. I was in an advanced program and skipped multiple years, but I couldn't take the daily reminder of how ostracized I was due to being gay when I went to school every day. On top of the bulllying I didn't have heat, food, or hot water, which made it even more difficult to get up every day and go to school. Why didn't we have these basic things? Because my father was always paying lawyer fees or was simply in prison for contempt of court due to not showing up for divorce/custody hearings. He used to tell me before going to court that if he didn't come back home it meant he was going to be in jail for a few (several) weeks until a court hearing and that I had to make sure not to tell any teachers, friends/their parents, or anybody because they could report me to child protective services and have me taken for being left alone months at a time at 12 years old.
I always knew I was going to end things on my own terms - by the time I was 16 the latest. For years I had access to quality Nem (believe it not), but I subconsciously looked for any minute reason to stick around just a little bit longer. I started to develop the mindset of "If I'm going out I may as well have some consequence free fun before." Unfortunately when I finally looked in the mirror and decided it was time, and that I was done with life, my Nem source was no longer around.
Fortunately I did muster up the energy and was able to get quality SN about 6 weeks ago. As a mmj patient I have a scale that can accurately weigh the SN, and I've been looking online for the Gram/body weight ratio that seems to be most successful. There seems to be a lot of differing opinions. I also have plentiful zofran that is given to me after seizures which should help as an anti-emetic to keep the SN down.
I suppose I'm writing this post because I'm trying to process all of this myself. I'm trying to process the fact that I have the SN, I need to plan an exact day, and that I can't keep procrastinating. Every morning when I wake up I think to myself - "Why in the world didn't I just take the SN last night??" Right now all I need to do is write my final goodbyes, find a gross cheap motel nearby, and get a room so I can finish all of this once and for all.
If I was smart I'd start my fasting now and finish myself off in a couple days, but for whatever reason I feel the need to give one or two people a last hug and goodbye. I suppose it will make me feel better and bring me some closure for when I have to sit down in front of the scale, weigh it out, and actually take it.
I'm 26, and I have temporal lobe epilepsy. My first major tonic-clonic (grand mal) seizure was around the age of 18. They worsened until I had one at 20 that required me to be airlifted, intubated for weeks, and left me with brain damage in the form of a scar on one side of my temporal lobe.
Now because of the damage I have nearly zero short term memory and extreme difficulty retaining information. Even best friends that I have known for over a decade can suddenly become strangers. I can be told a simple task and within seconds I forget it. I have to be introduced to people a dozen+ times before I can even recognize their face - let alone their name. I can't even remember my own phone number which I've had for years. When I'm having a conversation I have to stop every minute or two to have the other person completely summarize the whole thing just so I can attempt to remember what is being talked about and (hopefully) try to make a response before forgetting what we're talking about again.
I can't drive, or even walk to the store alone. The last time I walked to the grocery store (less than 0.2 miles away) I had a seizure on the side of the street. Luckily I didn't fall into traffic, and I was even luckier that someone driving by called 911 while I flopped like a contorted maniac on the ground, hitting my head, and foaming at the mouth. In situations like that I have an identification bracelet I have to wear 24/7 on my wrist that gives basic information.... and frankly wearing it makes me feel like a branded farm animal.
The feeling of having a seizure is petrifying, and it's not just the convulsions. I'm unconscious for that. What's scary is when I feel it coming on beforehand (called an "aura") and have to sit there thinking to myself - "When am I going to go? How long will I convulse? Will I wake up in the hospital? Will I wake up at all?" - while I'm simultaneously feeling my brain shut down before the conlvulsions start. I start getting a sensation of intense deja-vu and a fight or flight response with my brain saying 'This has happened before, whatever is is! Freak out! Your brain is shutting down! PANIC!' which can last several minutes before the convulsions.
Then afterwards - usually several hours after - I wake up with zero recollection of anything, with a mess to be cleaned up (think - complete loss of bodily control), and intense pain similar to pulling all the muscles in my body simultaneously, which can last several days. My doctor(s) try to give me narcotics for the pain but they don't help, can increase risk of seizures, and generally make me sick. I've broken so many bones on top of general injuries, but they're limited to what they can even do surgically because of the risks involved with my epilepsy.
I can't take a shower alone. I need to have someone outside the bathroom in case I have a seizure. The last time I took the risk of showering alone I ended being found on the floor, passed out after a seizure, with cold water running over me. Based on the timing I was likely unconscious for over an hour. Luckily (or perhaps not so luckily) I was in a position where I didn't asphyxiate during the post-seizure state (post-ictal) which can leave me unconscious and completely un-wakeable for hours.
I shouldn't even be cooking food on the stove if I want to be completely safe, because I've had a seizure while I was cooking and almost burned the house down!
If I do have a seizure that lasts too long I have to get a large dose of midazolam (a benzo - similar to xanax, klonopin, ativan, etc.) sprayed up my nose or given to me as a shot which puts me in what is essentially a controlled coma. So I have to make sure no matter where I go that I have it accessible and have someone that knows how to administer it. On that note - I have to teach literally everyone that spends time with me alone how to use the spray which in and of itself is embarassing.
The list of medications I have gone through in the past that either worked for a period of time then stopped, never worked at all, or were completely intolerable is mind blowing. The list of medications I take now which "work" (meaning the seizures are "minimized" as best as possible) is mind blowing. The current ones leave me sleeping 14+ hours a day, losing my hair, and completely out of it/intoxicated the 8 hours a day I am able to stay semi-awake.
Every morning I need to have an RN come check on me to make sure I haven't had a seizure in my sleep, and not to be dramatic, that I'm alive. On the note of seizures in my sleep - I even have to go to bed with Depends adult diapers on because of all the mattresses I've ruined from incontinence during nocturnal seizures.
I've been trying to find a way to obtain my own apartment using my liberal state's numerous (but often useless) social services. Unfortunately I keep hitting dead ends (after 6 years) due to extensive waiting lists and hoops that have to be jumped through. I receive disability, but other than that I have zero income so I'm stuck living in a little run down inlaw apartment off my fathers house that's missing windows and isn't heated. It's pretty cold where I live. Negative 10-15 degrees last week for a couple nights. Leaving my apartment at a maximum of 40 degrees during the day, and 30 degrees at night. With multiple space heaters running.
Oh, you know what just makes it all even BETTER? I'm gay! Lovely. Even living in a very liberal area, I find myself facing so much prejudice and hate from those around me. Some people can be blunt and cruel, but what hurts more are the "small" comments/insults that build up. Plus, honestly, I just feel lonely seeing all of my heterosexual peers in relationships while I sit here alone as ever. And the gay community (at least gay men) can be cruel and vain, so I've had guys explicitly tell me they have no interest in me simply because of my disability and no other discussion.
Much of my extended family has an issue with my sexuality as well - and they have no problem vocalizing their opinions about my "perversion" and "path to hell."
Sometimes I find myself sitting in silence going through all the little things people have said or insinuated and thinking about how much I agree with them. I AM a stupid, useless, ugly biological mistake.
My parents seperated when I was around 12, which was ugly, and my father took custody of me immediately. Why? Because my mother is a raging alcoholic with serious mental health issues that had/have been left untreated for decades. She drinks uncontrollably and was very physically abusive. VERY physically abusive. Her and I didn't speak until I was an adult and was old enough to understand her drinking problem, but it's incredibly difficult to talk to her, let alone spend time with her, because she's drunk before noon every day. With her increasing blood alcohol content comes increasingly cruel statements and malicious actions. One simple example: Giving me a ride to a doctor multiple cities away last week, then calling, full of laughter, to tell me that she purposefully left me stranded because she perceived it as funny.
I couldn't even get through high school because of all the bullying due to me being a gay outcast, which led me to drop out on my 16th birthday. I was in an advanced program and skipped multiple years, but I couldn't take the daily reminder of how ostracized I was due to being gay when I went to school every day. On top of the bulllying I didn't have heat, food, or hot water, which made it even more difficult to get up every day and go to school. Why didn't we have these basic things? Because my father was always paying lawyer fees or was simply in prison for contempt of court due to not showing up for divorce/custody hearings. He used to tell me before going to court that if he didn't come back home it meant he was going to be in jail for a few (several) weeks until a court hearing and that I had to make sure not to tell any teachers, friends/their parents, or anybody because they could report me to child protective services and have me taken for being left alone months at a time at 12 years old.
I always knew I was going to end things on my own terms - by the time I was 16 the latest. For years I had access to quality Nem (believe it not), but I subconsciously looked for any minute reason to stick around just a little bit longer. I started to develop the mindset of "If I'm going out I may as well have some consequence free fun before." Unfortunately when I finally looked in the mirror and decided it was time, and that I was done with life, my Nem source was no longer around.
Fortunately I did muster up the energy and was able to get quality SN about 6 weeks ago. As a mmj patient I have a scale that can accurately weigh the SN, and I've been looking online for the Gram/body weight ratio that seems to be most successful. There seems to be a lot of differing opinions. I also have plentiful zofran that is given to me after seizures which should help as an anti-emetic to keep the SN down.
I suppose I'm writing this post because I'm trying to process all of this myself. I'm trying to process the fact that I have the SN, I need to plan an exact day, and that I can't keep procrastinating. Every morning when I wake up I think to myself - "Why in the world didn't I just take the SN last night??" Right now all I need to do is write my final goodbyes, find a gross cheap motel nearby, and get a room so I can finish all of this once and for all.
If I was smart I'd start my fasting now and finish myself off in a couple days, but for whatever reason I feel the need to give one or two people a last hug and goodbye. I suppose it will make me feel better and bring me some closure for when I have to sit down in front of the scale, weigh it out, and actually take it.
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