#life with non epileptic siezures

[honeycombhank]

3/10/24

3.10 miles in the the cold wind and rain out in the country today.

I thought I was going to have a siezure while playing games with my family and had to sneak away, a walk was actually just what I needed, it doesn’t always keep my episodes from coming on but today it did.

[honeycombhank]

3/5/24

Just thinking of things I want to do more of or changes I would like to make..

I want to start going to the gym with my lil brother, I feel like we could make that work out if I had some headphones and his support if I had an episode.

I want to plan a big backpacking adventure

I want to go out every other weekend for a hike date, I don’t know if this will happen but it would be wonderful.

Reading before bed again

Hang up all my artwork

Be better about decorating and then taking things down and packing it away in a timely manner rather then letting it all haunt me over months and then it becomes so overwhelming I can hardly function around it.

Keeping the air purifiers clean

Make art and make sure to set aside more time for it

Go out to my grandpas for walk/ jogging time with and without nel.

Have more movie date nights and think of more creative date ideas.

Start playing music with my family again

Go to open mic again

Go dancing again

Do my best to let go of what I can’t control and focus more on myself and the things I do have control over.

Have a weekly day that I call a friend who I miss

Try to practice saying no to alcohol even more often, just because sometimes.

Keep a dream journal

Change out candles to spring scents

Organize clothes and fill dressers

I’ve been keeping my clothes in a huge box? Idk why? I get so easily overwhelmed and tired after doing chores and there is always so much to do

Set up rat free roaming room, I’m so excited about it I can’t even explain my excitement.

This year one of my main goals is to just be able to go around the block by myself.. my siezures keep me from doing that at this time and I want to change that and get to a place where I can go by myself around the block and be okay.

[honeycombhank]

Given everything you deal with, what does a perfect day look like for you right now?

Well, if we are talking the perfect day for me in my current situation with my current health challenges?

I think then it would be a day where I don’t feel guilt for my existence, a day where I don’t feel like I’m being the bad guy by asking for help.. it would be something like..

Waking up feeling refreshed this doesn’t happen often but if it was a perfect day I would definitely wake up and feel like I had truly rested and that would mean I had hours and hours of uninterrupted sleep where I didn’t wake up a million times, okay anyway, I would have coffee with my family I think and I would go on a long hike and see the sun shining through the trees and my love would have made my favorite pasta salad for lunch, then afterwards we would cuddle and talk after getting back home and I would feel I had gotten great quality one on one time with my love, the rat cages would be clean and the house and the dog and cat would be taken care of, someone would have taken care of my pills for me and my CPAP and night G would be clean as well, this would greatly limit the stress of getting things done when bed time came.

On this day I would feel inspired to paint and I would be able to get lots done, i would of course spend every moment cuddling with my rats while at home even while doing other tasks.. I would also call a friend that I’ve been too anxious to call and that would feel amazing to feel brave enough to be vulnerable and just give a phone call a shot.

This is what I imagine a perfect day looking like in my mind at the moment, but this is a hard one to answer because I can imagine a couple of other sorts of days as well that would feel pretty perfect.

Mainly I think it comes down to, not having to feel scared about asking for something. Feeling refreshed, feeling confident that things are taken care of and clean, getting to move my body and push myself physically, getting some really good quality time with the ones I love and enjoying something like making art.

This is such a long answer!

Thank you for the ask! Very good question!

3/2/24

[honeycombhank]

Recently I have opened up with my family about some things and stuff has backfired on me it seems like, I am sitting in a feeling of uncertainty about how my family might view me and that’s not something I want to feel.. I love my family so much.. I am aware that I am extremely sensitive, and with that comes a lot of uncomfortable feelings for those around me.. I think I bring up things that people aren’t ready to face?

But like it’s uncomfortable for me too? But there are times when I can’t hold it in and I need communication over certain topics and issues and if I don’t I can’t sleep and it eats me up inside.

I know my family loves me, I just feel like I am so different than other people sometimes or so overwhelming.

I’m trying to give my family members space right now. I’m not sure what else I can do,

I know this doesn’t make a whole lot of sense on the outside but I just really needed to express myself in some way and this felt helpful.

If you read this, thank you

[honeycombhank]

why is the spring candle the last thing you’ll be able to pick out for yourself for a long time? :(

Because of my siezures, I cannot work, it’s been such a struggle because of course disability is a mess to try and get and I have no idea how long it will take, I have spent all of my savings and suffer greatly from this, I am VERY lucky I am not homeless at this point.

I have a partner who is willing to pay the bills for the roof over my head and I have food stamps for for food.

I borrow money from my folks to get dog and rat food but I feel so much guilt right now because I have never been a pet owner with no money before and they deserve all of the things they were able to have before this. Sorry I went off topic for a minute there.

I count my blessings everyday I will say that.

The answer in short is that I have become disabled as an adult and do not have any income for the foreseeable future and not without trying my hardest.

Thank you.

[honeycombhank]

My massage therapist is the most wonderful person, she is so caring and has such brilliant mothering instincts, she works hard to take care of her self and others and has truly made such a difference in my life.

Sometimes she cries I think while she is giving me my session.. the first time it was because I had a seizure that started in the waiting room and I was able to walk to my dads truck parked just outside and get inside, then the siezure really started.

She told my dad to take our time and that if i could still do my appointment she would be ready for me.

She waited so patiently and I eventually made it inside and we had my appointment, she cried and told me she just feels so much for me and wants me to feel better and that she is a mother and it hurts to see me suffering and going through trauma in my own body.. I really felt it meant a lot to me hearing that from her, it was like.. she gets it somehow? She is the only person I’ve met who already knew what my type of siezure even was, I felt somewhat understood by her. That’s a good feeling.

There have been a few times since that day that she starts the session with me and then I hear her sniffling and I can’t see her but I wonder if she is feeling a great deal of pain from or for me again? Idk and I don’t ask but maybe I should ask, maybe I should make sure she is okay next time? She may also have allergies? Many people around here have allergies.. idk

She almost always gives me an hour or just under that for my half hour session placement, that by itself is so loving and generous of her, she knows I need it so badly and that my dad is already paying for the sessions because I have no money.

Not that she is an angel, but she really might be an angel

3/14/24