Been to an Epilepsy Monitoring Unit? What’s it like?

I had my first experience at the eplipsey monitoring unit in may. I was inpatient after 3 days. I also had to use a bed side commode. But I did have 2 seziures on Wednesday that day.

@lauragal
Although my friends stuck with me through thick and thin some of their parents didn't.
Sometimes friends need some time to adjust to the new you. You need to be honest with them about your changes. Not everyone can cope with changes easily, especially medical issues. I have a friend who has a hard time understanding my memory and other issues. It's so easy for him to remember and so difficult for me. I don't think he will ever truly understand. He's a wonderful man and he's always there for me whenever I need him. He'll do anything I ask of him. Sometimes when he's over at my house, he'll just start doing something that needs to be done. He called me to meet him at the airport for breakfast, I forgot. He said "how could you forget, I just reminded you 30 minutes ago". I don't think he has the ability to understand my issues. I don't blame him. I accept him as he is and he accepts me the best he can. That's good enough for me.
But it's not a one-way street. You also have a responsibility too in teaching them how you've changed and have a heart heart with them about the changes. Not wanting them to affect your friendship and what they need to do versus what you need to do to mend your relationship. Many people have hurt me throughout the years. Believe me, I know it hurts, may make you angry. I think that's been the most difficult part of my 60 year epilepsy journey. Lots of it is ignorance but we can help those people by educating them, even though we'd sometimes rather punch them in the nose.
Take care,
Jake

@thefincks
Hi Lisa's mom,
I haven't heard from you in a while and wanted to check in.
Lately, I started a discussion in our group for families walking alongside children with epilepsy — it would be lovely if you could join us there: https://connect.mayoclinic.org/discussion/families-walking-alongside-children-with-epilepsy-lets-connect/
How has your little princess been doing? Looking forward to hearing from you again.
Chris

Hi @lauragal,
I haven't heard from you in a while and wanted to check in. How have you been doing?
Chris

Hi @lauragal
Thank you so much for your kind words!💜
I'm glad you've found the Epilepsy & Seizures Group at Mayo Clinic Connect. Thankfully, today we have technology that lets us connect with people who truly understand us, no matter where we are in the world.
Actually, my husband and I dream about moving to a smaller, quieter city one day. With today's technology, it feels more possible than ever!
Just out of curiosity, since Covid, most of my sessions with my neuropsychologist have been virtual, and honestly, it works beautifully. It's been such a relief, especially since I can no longer drive and the traffic in my city is crazy. She has helped me enormously with accepting my epilepsy and all the life changes it brought.
Have you considered virtual support from a psychologist or neuropsychologist as an option?
Chris

@santosha YOU Have Been SO Kind! If It Weren’t For The ‘Brain Team’ At UTSW I Don’t Know What I Would Have Done! It’s Strange Living In A Small Town Too Far Away From A City Like Dallas, There Aren’t ANY Support Groups At All!!! Another Shocking Thing I’ve Discovered! Although, Before My Brain Surgery Most Of My Friends Were The Folks I Worked With In Dallas (I Just Didn’t Want To Raise My Kids There) So I Drove 1 1/2 Hours Each Way.. To A Small Town (Move-In Town, That I Learned Is NOT Actually Friendly To Folks That Weren’t FROM Their Town)… Anyway, Just Too Many Shocking REALITY Struggles That I Do Actually Continue To Face Daily. I TRULY HOPE YOU HAVE A HAPPY KIND LIFE AHEAD OF YOU!!!!

@lauragal
I'm so sorry to hear that people who were once good friends became cruel to you. That must hurt so much.
After my epilepsy diagnosis and during periods of poorly controlled seizures, some people distanced themselves from me. I was heartbroken about it at first, but eventually I realized these people weren't really true friends. Today, I'm actually the one who no longer wants to be close to them. Real friends are the ones who accept us just as we are. My epilepsy showed me who my true friends really were.
On the bright side, I've met other wonderful people in my epilepsy journey who know about my condition and have genuine respect for it and for me.
Have you been getting any psychological support to help you through this and other challenges after your surgery and that come with epilepsy? It has helped me tremendously. Don't face this alone!
Please remember that epilepsy does not make us less valuable. On the contrary, it shows the strength and courage we carry inside us.
I'm truly glad my words brought you some comfort, and I hope these do too. 💜
Chris

@tbrookhouser Thank YOU For Your Kind Reply!

@santosha Thank YOU So Very Much, Chris! I Deeply Appreciate Your Kindness.. I Definitely Needed To Read This Today! One Of The MOST Painful Side-Effects Of Brain Surgery Has Been The Way People That USED To Be My Close Friends Suddenly Decide To Be SO Cruel To Me… Because I AM NOT THE SAME PERSON I USED TO BE BEFORE THE BRAIN SURGERY…. At Times Like These I Honestly Regret Having Tge Surgery. Believing I Would Have Been Better Dying While I Still Had Kind Friends In My Life.

Hi @lauragal
You are incredibly brave! What you went through sounds so intense, and I'm so grateful the surgeons at UTSW were able to save your life. It takes real courage to go through brain surgery and then relearn so many things.
Wishing you continued strength💜!
Chris