New here...and my story

[onlygodknwswhy]

Hello to all, this is my story, I've never really been able to tell it:

I found this thread, because on days like this when I feel useless or helpless because of my health I usually read up on health. I was diagnosed with epilepsy at 12 and I didn't let it slow me down. My parents, schools were always not wanting me to exurt myself because I was athletic and lived for sports. I use to use my epilepsy as a motivation for myself to prove to everybody that not only could I do it, but I could do itbetter than they could have imagined. I was also a student that was usually in the High 80% to Low 90%.

I have played many sports, usually being the go to guy on the team. I also found a love for wrestling in high school, that I wanted to go to University for as well as get a degree in Physiotherapy. Everything was going to plan.....

but..

my last year of high school at age 19, I developed a sleep disorder (DSPS is the short form if you want to google). My epilepsy is basically based on sleep. I sleep 7-8 hrs im good to go, i sleep 4-5-6, then a seizure becomes almost certain. Nothing else seems to trigger seizures for me other than lack of sleep. If I feel like one is coming on early enough, I could go to bed, sleep an hour or 2, wake up and be totally fine like nothing happened

I started not getting to sleep until 4-5-6 in the morning and not waking until the afternoon. Which is when things started to fall apart. The school was cracking down on me, parents were cracking down on me, everybody thought I was into drugs or something. I almost didn't graduate high school, I had a warning about being expelled, so I went and had 4 seizures in a month. The school actually gave me a 50% in a parenting class (that I never took) just so i could have my last credit. This is the time that I started to get the labels: All the talent but no heart, Lazy and too scared to move on, All the brains but too stupid too use it. etc. I didnt know what to do, because I use to use my epilepsy as a motivator, now that I developed a sleep problem, I say I can't do this because of my epilepsy.

I took a cpl years after school to try to work out this new thing in my life. When I started yearning for Physiotherapy again. I took a Physio Assistant course at the local college, just to kind of get back in the rythem of school. And after 6mths I had to stop. I missed approx 50% of my classes, and still held a 3.75 GPA (like I said this was a dream of mine, most ppl read kootz, I read Anatomy and Physiology books). The teachers would talk to me, because I needed to be the for the practical work. So basically I was told I should take care of my health before school. I also had a few instances in class where I felt like I would have one, but had someone drive me home so I could get to bed.

My doctor decides at this time to take me out of work, out of school to work things out and maybe go on disability. To my suprise Epilepsy isn't on the Disability's list disabilities. So he basically told them he HAD to take me out of school, work, and everything and after 3 tries I got on. I tried many jobs after being on disabilty, even got my Real Estate licence. I have a natural way with ppl and it I did ok, but with my irregular sleep & making sure to sleep my alotted time didn't work well when ppl were waiting to see, or put bids in on houses.

Now I am a bookkeeper, working with my mother inlaw. Honestly its the most boring job I have ever done, but because its with my mother in law I can work it around my schedule. I sometimes have hard times with it because I end up doing books for physiotherapists, chiropractors, and I see what they are doing, and can't stop thinking that these could be my books, I have the ability to do it.

Anyways I am 33 now, and finally have a wonder fiance that understands me, supports me. She even has me taking my medication properly. It is very hard to do so when your sleep is all over the clock. But for some reason I always have that part inside me that says I have let myself down.

Thanks for reading and letting me finally get this out of me

[Bernard]

Hi ogkw, welcome to the forum.

My wife doesn't have DSPS, but she also is extremely sensitive to lack of sleep. She needs about 9 hours of sleep every night to keep her seizure threshold high.

There are also several members here who were diagnosed with sleep apnea and their seizure activity went way down after they started using a CPAP machine and getting better sleep.

Proper sleep is so important!

[Nakamova]

Hey ogky, welcome!

I hope you have a chance to explore the site. It sounds like you are in a good place now, but we have one forum, the "Padded Room" that's good for venting, as well as forums for chatting and research, information about special diets, etc.

Is there any chance that you could try going back to school, but on a part-time basis? Often schools will try and work around any health issues their students might have.

Best,
Nakamova

[kyrissa]

Hi there! I am new here too. Your story is inspiring, the motivation to keep moving! I have complex partial seizures, and my current status keeps me from working. It seems that your motivation has helped you move on. I am lacking that right now in my life. Thank you for sharing your story!
I was diagnosed with my seizures when I was 17. They were not that often, so I tried to keep going. I finished high school, and started college. I moved to MI and finished 3 years of school, my prenursing classes. I was not accepted for nursing just yet, so I moved back in with my parents working as a nurse aide. I met somone and fell in love. I decided not to finish school in MI. I stayed in CO and finished my bachelor of science in nursing. I could not pass my board exam, but got married. I worked as a nurse aide for 3 years. My seizures had been somewhat under control. Then, my husband told me he was having an affair and was leaving me. 2 nights later, I had an aura (no seizure) on my break at work. I was fired. Within 1 week, my marriage broke and I lost my job. No steady control of my seizures follows.
I was able to get disability and medicare.
God bless my parents. I don't know what I would do without them. Yes, I am 30 and still living with my parents. It's not safe for me to live alone, but it tears me down when I see my old classmates with families and houses.
Despite all my complaining, I do have a very strong faith in God. Paul, the apostle, said he had a "thorn in his flesh", which some scholars believe it may have been epilepsy. God gave Paul the strength to keep going. His "thorn in the flesh" may have been a torment from satan, but God did give him the strength.
Right now, I am struggling with why and if I'll ever move on. My memory stinks so bad that I can barely remember peoples names.