Seizures away from home.

Janus

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I am visiting family in Maine. 3000 miles from home and 3 hours different. I flew here and that went fine. Stayed one night great. Then I noticed in my med tray that I had taken the evening meds in the morning. So I took the evening dose from extras. Because they're all different. You may know. .. for me lamotrigine in the morning, and the others are only in the morning,etc etc.
So I have this seizure in bed. My caregiver, girlfriend who is Always there. My son came with me, and thank God. He got up and have me the E-meds, diazapam. I have Retractable epilepsy, uncontrolled, usually status. Only stopped by drugs or ice bath. So, I have to be given this gel in mouth to knock me out. So that was a success. But scary. Sometimes mine come in clusters so I pay real low for a few days.
But. My caregiver is by my side 24 hours a day. So I'm scared to be alone. It's beautiful country, nature. Living on a dirt road I am trapped. I do not go on walks alone. My family know. It's new to them. my epilepsy started in my twenties when not in Maine. They know about me and what epilepsy is only by what I tell them but they've never seen a seizure. And now I hang around them all the time. Like follower people around if they're the only one else who is home. This is my first time doing this. ( Being able to say to family, my caregiver is not with me, I can't be alone. While here, my son knows where the E-med is.. that is a form of safety. It's a lot of work because they have their lives and when there is one or two people home, I feel so guilty about feeling like I'm always in the way and my problems are just too much for their comfort. I told them how I feel and they have been so supportive. ( ,"Oh, don't worry honey",) I don't believe it. I feel guilty.
 

Heavy Kevy

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I hear you. My family is trying to make plans around my seizures. It’s a beautiful New England day. Put on some music and sit outside. ✌
 

Nakamova

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Try not to feel guilty. :) Enjoy their company AND the surroundings. Like HK says, sit outside, maybe go for a brief accompanied walk, just breath the fresh air.
 

Porkette

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Hi Janus,
I used to live in North Anson Maine are you any place near there if I may ask? Don't feel guilty and try to live a normal
everyday life like you always do. I have had absence status seizures when I was on neurontin but once I got off the drug
the status seizures stopped.
As Nakamova said don't feel guilty and have a good time. I worked in public school for 35 yrs. and had many seizures
in front of students and staff and only 4 staff gave me a hard time but they were fired from their job in the long run.
Get otside and enjoy the sunshine and warm weather so you will have joyful memories to look back on over time.
Wishing you only the best and May God Bless You,

Sue
 

Janus

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I am so proud of my son came here to celebrate his 20 year BIRTHDAY. I hate to put this damper. A TC. seizure Saturday. And last-night. Waking at 4 covered with sweat. And freezing. Could not go back to sleep. Wobbly today. I'm so anxious.. I may have COVID. We're getting tests. But geeze
 

Janus

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My son keeps checking in and telling me where he is going. He knows where the e-meds are.

Man am I glad for that.
 

Janus

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Thank you all so much. Good words coming tho me. People here are so good ( I mean 'here' CWE WEBSITE. ) Thank you SOOOOO much for the understanding words. And it's a safe place to go on about E life.
I think about this site and what I've read here. You all have impacted my life. So good. Try telling people about my daily life struggles with E and it is far from understood in the world. So here it is safe. -Douglas
 
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