So Soon!?!

[Rae1889]

okay, so I have my appointment set up for my admitted EEG. 5-7 days. I am suddenly nervous. instead of making this super long paragraphs i'll just list whats to come.

+ Visiting hours are from 9am-8pm. Which means I dont get to see many people cuz everyone is working. I'l be "alone" and thats scary.

+ I wont have chad to sleep beside. The beds are probably those uncomfortable gurney things.

+ The food is probably going to suck, and they probably wont listen to my gluten free requests.

+ I have a room mate. Another female luckily, but still. I'm not ready to see someone else have a seizure. Im panicing about that. What if it turns status and she dies????

+ I dont want a complete stranger watching me seize or seeing me in a very vulnerable position looking groty.

+ i cant have my cell phone, laptop, gameboy, or any electronics. So i'm going to be bored out of my mind. I have to share the TV with the roommate so who knows what i'll be forced to listen to. or watch...

+ I have issues sleeping at night. I freak out about noises or shadows. (yes that is slightly pathetic that I'm 21 and afraid of the dark)

+ I dont want an IV. I am rarely coherent when I get one, so Im not sure how im going to react being fully alert while someone jabs something in my vein.

So tell me how to keep myself occupied. In my generation, technology is everything. I dont have books I read, because I read way too fast. Typically if I sit down to read, i can read 2 books a day. I dont want to lug 14 books in my suitcase on the bus.

So how do you keep ocupied for a week without sleeping the whole time. When I am bored I get tired, grouchy, hungry and anxious.

 

[Endless]

Inpatient EEG

Hi, Rae,

I was scared going into the hospital for my video EEG, too. There were so many unknowns. Let's see if I can help on any of these.

+ Visiting hours are from 9am-8pm. Which means I dont get to see many people cuz everyone is working. I'l be "alone" and thats scary.
People can call you during the day.

Ask specific people to call you at specific hours (for example one person per hour). It's kind of like having company. That's what my family & friends did. Also, many hospitals don't strictly keep the visiting hours (mine didn't). Ask your nurse.

I'm assuming your hospital will have these things... When you get there ask for the hospital chaplain. They are non-denominational and don't necessarily talk about god. You can talk with them about being scared, and they can help. They'll also visit you periodically to make sure you are okay. You can also ask for visits from the hospital volunteers. They volunteer for exactly that purpose. They're really nice and bring you books, magazines, etc.
​

+ I wont have chad to sleep beside. The beds are probably those uncomfortable gurney things.

That's hard. Can chad stay at night? If so he can hold your hand all night, and that helps. Just knowing he is there and that he loves you is enough. A pillow tucked behind your back or by your side helps, too. It's going to be okay. As for your bed, bring your own pillows and a good thick blanket, it helps.
​

+ The food is probably going to suck, and they probably wont listen to my gluten free requests.

Yes, the food sucks. But there are some sure bets that most hospitals actually do well. I never get tired of those good picks, like oatmeal with fruit, soup, custard, pudding, etc. I smuggled in contraband when I checked in, like chocolate, homemade granola, etc. I also had good food delivered, and my family also brought me take-out from my favorite restaurants. I found out on the second to last day that if I would have talked to the head of food services they would have gone out and gotten food for me, since I'm a vegetarian and they basically had no protein on the menu for me.
​

+ I have a room mate. Another female luckily, but still. I'm not ready to see someone else have a seizure. Im panicing about that. What if it turns status and she dies????

No worries. Your roommate won't die. Neither will you. That's why you are in the hospital and have an IV in your hand - it's for emergency meds. They will take very good care of you, and her. Yes, it's not great watching someone else seize. Keep the curtain between beds drawn and take earplugs if that will help. Having her there may turn out to be a good thing, though. You may make a new friend and have someone to talk to while you are there.
​

+ I dont want a complete stranger watching me seize or seeing me in a very vulnerable position looking groty.

I don't blame you. Keep the curtain closed between you if you want to. But remember, you'll both be sharing the same experience. Kind of a sisterhood kind of thing. It's something you have both been through and seen before. Now you'll have someone who really understands to go through this with.
​

+ i cant have my cell phone, laptop, gameboy, or any electronics. So i'm going to be bored out of my mind. I have to share the TV with the roommate so who knows what i'll be forced to listen to. or watch...

Wow. My hospital let me have any electronics I wanted as long as I didn't charge them inside the room. Books. Take lots of books, puzzles, crosswords. Maybe a board game or two in case they let you sit in a chair with your roommate. You two can play games together. :hi5: Do you like to write? That can burn hundreds of hours.
​

+ I have issues sleeping at night. I freak out about noises or shadows. (yes that is slightly pathetic that I'm 21 and afraid of the dark)

I have issues with that, too. The good news is that being sleep deprived helps the cause - more seizures. You can turn on a light on your side and read a book if you want. And chad will be there. Everything will be okay. You can also go to sleep with your little light on your side on. No need to be in the dark. Ever.
​

+ I dont want an IV. I am rarely coherent when I get one, so Im not sure how im going to react being fully alert while someone jabs something in my vein.

Well, no way around this. You've just gotta "man up" and take the needle stick. So grit your teeth, look away, and count to 10. It will be done by then. The IV access HAS to be in for emergency meds, if you should need them. They probably won't have an actual bag of fluid hooked up to you. Just the IV access thing in your hand or arm. The good news is that there is only one stick, for that one thing. Everything else is administered through that port. It saves TONS of needle sticks while you are there.
​

So tell me how to keep myself occupied. In my generation, technology is everything. I dont have books I read, because I read way too fast. Typically if I sit down to read, i can read 2 books a day. I dont want to lug 14 books in my suitcase on the bus.

Lug the books. You'll be glad you did. Do you play an instrument, like a guitar? Your roommate might not appreciate that, but it passes the time. Puzzles, books, crosswords, etc. are a lifesaver. I also had fun with Legos. A volunteer brought me those from the pediatric wing. lol. If you have a young relative to borrow some physical toys from that'd help, too.
​

So how do you keep ocupied for a week without sleeping the whole time. When I am bored I get tired, grouchy, hungry and anxious.

Sometimes how we feel about things is just as much about our outlook as it is the circumstances. You could think of it as a protected vacation from the world. A chance to think, meditate, and be peaceful. A chance to relax and realign your thinking. A chance to be a help and comfort to the person beside you. Try to make your own choices about how you feel, not let the circumstances control you.

If you can't change how you think about your time there, then take slow deep breaths when you start to feel grumpy or anxious. It's only for a few days, and I know you are a strong person and that you can do it.

We are going to really miss you while you are away. We'll be thinking of you every day.

​

 

[Cint]

Oh Rae,

Everything will turn out ok. I agree with everything that Endless has stated. It won't be that bad. When I was in and out of the hospital for my EEG testing and then the lobectomy, I was by myself most of the time. My husband at the time couldn't be around all the time because he's a pilot and my family lived out of state. Plus I had two small children at the time, so I had to worry about finding someone to take care of them. So being in the hospital with experienced nurses, doctors is the best place to be when you seize. And why worry about someone else witnessing you seize if they themselves suffer seizures, also? They probably feel the same way. I've had many seizures in public, so that would not be a big deal for me in the hospital.

And with this generation and technology, well.... you need to take time and relax,
meditate, think good thoughts. Do some sudoku puzzles, reading, crossword puzzles, etc. We didn't even have laptops back when I had my video EEGs, surgery done, so I did a lot of reading and crossword puzzles, word finding puzzles, etc.

It will be alright.

 

[Rae1889]

Okay, thanks you two.

I know that it shouldnt be too hard, its just im not in the "suck it up buttercup" mood. I am actually terrified of going into the hospital. The last time I was in a hospital, i had a tube down my throat and mean nurses. Im scared witless that its going to happen again. im scared witless of having more nightmares of the ICU *I still have them* and i wanna feel like a whiney baby, yet at the same time i wanna prove to myself that it isnt a big deal...

I think its mostly that I have small brief and extremely unpleasant memories of the ICU, that i just cant seem to shake.

 

[Nakamova]

I read somewhere that having images of nature to look at can make you calmer and heal you faster. Chances are you won't be in a room with a window overlooking a scenic vista, but maybe you could bring a photo album of your own pix, and/or a book of nature photography? And if you bring a disposable camera -- low tech! -- you can document the yucky plate of hospital food, or how you look with the wires attached, or the cute EEG technician, and put the results in your memoir...

Can you bring a favorite pillow? Throw Blanket? Sweater? Fuzzy Slippers? Eyemask? Puppy? Cabana Boy? The more things that make the anonymous overlit pasty-white hospital seem familar and friendly, the better.

I hope it goes swiftly and painlessly. I'll be thinking of you.

 

[alivenwell]

Best wishes for a much better experience that you had in the past. It sounds like you need to be with Chad because of past experiences. Hopefully your roommate will be a good mate for your shared boredom.
I agree with Nak. Bring non-technical stuff for a change like drawing material, magazines, puzzles, that reading light to help sooth you and a good story for our Creative Writing Page.

 

[Chel]

Hi Rae

Wow, that is an awful long time to be in hospital without being incapacitated! I'd go stir-crazy, too. Great suggestions already made; I especially liked the idea of taking a photo album and something to write on.

Is there any chance you can talk to the nurse and explain your fears, including that it's because you've had a negative experience in ICU previously? Perhaps you can ask to have a quick tour of the EEG Suite/room, so that you have a picture in your mind's eye of what to expect. Most of your concerns are fear of the unknown, and if you know what your room will look like, including whether there are nice pictures/outlooks to occupy your mind, this might help.

You haven't mentioned, and I know nothing of admitted EEGs so pardon my ignorance, if you can move outside the room. If you can, is there a computer you can log into for say, half an hour so you can have an online fix once a day? Just to catch up on emails so you don't feel so isolated. If not, perhaps Chad can print some emails and bring them in for you.

Re the gluten free... Gluten free diet is a medical requirement for most who request it (I don't know if it is for you, or a personal choice). Phone again and ask to speak with the Kitchen Manager (or whoever is in charge of the meals), and reiterate that you require gluten free meals for your stay. They should be compliant, as you wouldn't be the first to request this. Just to give yourself peace of mind over your food. Also, take a few gluten free snacks with you - snack bars, crackers - for when the midnight munchies hit, the kitchen is closed and the nurses only have packets of wheaten crackers to hand.

Good luck - you'll either come away rested or insane, hopefully the former!

Chel

 

[Endless]

Rae,

Have you gone in for your test yet? If so, how is it going? If not, do you have a firm date set for the test?

 

[momof3boys]

reading the responses has helped me out a ton! Im scheduled to go in for a video EEG March 7, 2011. Im kind of nervous about it. Im just doing research to get myself prepared for it. Im sure everything will be fine though.