Dear Erin,

I've read this entire thread twice just to make sure I understand your circumstances. I have great empathy and sympathy for your physical symptoms and I'm fully aware they affect every aspect of one's life. I don't believe the "physical" game is what's hitting you the hardest. It is the game going one between your ears which is the major challenge.

Ironically, the game between the ears is the only game we have total control. What I am about to share may not be what one "wants" to hear, but what one "should" hear. Take it for what it's worth, should it be of any value or benefit to you. I present it without malice or ulterior motive. And you may feel free to tell me to simply go sc**w myself.

Many times when feeling bad physically we become highly frustrated with the fact others don't seem to care. Everybody has their own filter for what occurs in their surroundings. Our challenge is to learn not to give them permission to mess with our heads and not take ownership of their shortcomings. This allows them to take control of our lives and we are the only ones who may allow or deny that power.

The best example of my point is how you took the "power" of messing with your mind away from the individual using the power chair. That is what I'm talking about but applying it to all areas of your life. Regarding the dinner, who gives a dink whether they had seafood or not? Nothing but allowing them to distract your thoughts prevented you from simply fixing your own dinner or even leaving to go out for something. Waiting for someone else to "understand and respond" to what we believe they should, are misguided expectations of others.

I have been in your situation 100% and it took me some time to realize I was no longer going to allow these people to affect me in this manner. (Doctors and neuros especially.) I got very angry and began to be my own best advocate. The response of other people was nothing less than amazing. The power and strength I granted myself actually had a positive effect on my symptoms and their severity. As the movie said, "I'm mad as h*ll and I'm not going to take it anymore!" So I did something about it and took my power back.

I ask that you only think about this as it may or may not apply to your situation. Use what you can, discard the rest but do what is in your best interest. Do not give permission allowing other people to define you. Take that darn power control and don't let anybody move that chair but you. I know you are strong and none of this is a big surprise to you.

I will make it a point, should I ever come to visit, to politely ask which chair shall I sit?

Thank you for reading this. I hope it is of some help.

Your friend,

Oh Erin! it really does sound like stress is the key word of your corner right now, and stress...well, stresses me out! my sx go crazy when I am overly stressed, and I get all sorts of sx that pop up and go crazy.

I too have one of those sisters that has zero idea of how badly she impacts those around her, and has a Tough Patootie attitude if you confront her. Since I cant change her, I CAN change me. Can you schedule time at your b/f house when you know she will be in town? or taking over the house? Can you just close your door, and watch tv? order a delivery of food for your own door? As for the neice riding the chair like a horse, you did the right thing, just remove the remote. Little kids like things like that, and she was just being a kid after all. If her momma would take control and teach her...(not going there) and you do have your own space in your parents house. Your parents simply cannot refuse to allow one child to be home, and not the other. It just isnt fair. Even if one is handicapped. If the door is open to one, its open to the other. I am sure you get that.

I hope you take some time to relax. Do yoga, meditate, zone out, get out of that house, take a mini day trip, take some ME ME ME time, even if its just a bubble bath with the door locked. I know you have worked hard to take care of mom, but you also need to take good care of you.

My world changed dramatically when I stopped trying to change my sister, and started changing the way i reacted to her. I now view her as sad, lost, and unable to control herself. I cant get mad at a rooster for crowing at the dawn light, any more than I can get mad at a goat for chewing things. She is the animal she is, and me getting mad wont turn her into a princess. PM if you want to talk.

Reason I didnt leave last night, I'm scared to drive my car with all the numbness and reduced mobility crap going on. I'm scared my reaction time has been fubared. Not many restaurants will deliver at 930 at night too.

My dad ended up taking me up to a restaurant to get take out. (that was good, but it's bugging me this morning)

I didnt fall asleep till about 630am. It's now 945am. Dontcha just love the sleep deprivation from the MS sometimes? Now my head hurts. Argh!!! (neck hurts more now too)

I think I'm going to lay back down and see if sleep will happen again. I'm tired.

Hey Erin, I am just now catching up. Sounds like you had one heck of a challenging day, but you did get through it OK. I understand what you mean about driving. By doctor's orders, especially after the brain stem stroke, I am limited to driving within a 5 mile radius of home. Personally, I think he's trying to kill me because don't 60 some percent of all fatal accidents occur within 5 miles of home?

My biggest problem with driving is cognitive and attention. Too munch incoming info at the same time to process, easily distracted, forget I'm even driving a car.

Your's is the first post I read this morning, at 4:30 AM, and you made be laugh out loud which felt great. Why? You used the word "fubard." I love it and thank you!

Hoping you have a better day today since the day is brand new once again.

I still feel FUBAR.

I'm tired, sore and the MS trolls in my head are not letting me sleep. I'm trying to drug them into submission with ativan. It's not working...wait...maybe...nope.

A bomb could go off right now, and I'm calm enough that I'd just look over and critique the special effects and complain a little about the noise, but I probably wouldnt get up because the ativan has me calm...just not sleepy enough to let me sleep.

I'm going to attempt the sleeping again...I wish my Kindle book I just bought had the text-to-speech enabled on it. If it were, I'd have the kindle read me a story. The droning monotone of the computer voice it reads with would have me out pretty quickly probably.

ok, time for lap two on the sleeping attempt.

Erin, Hope you're sleeping. At 5:30 Pain got me out of bed again.

I slept some. Spasticity woke me up at 8am. That was unpleasant.

I'm waiting for the baclofen I just took to kick in before I try to lay down again.

I hate spasticity.

edited to add

cant fall asleep. My diaphragm (sp?) feels like someone is twisting it. Making my breathing feel weird. I'm not feeling a hug, just stiffness in the diaphraghm (too early for me to look up how to spell that word) took some baclofen for the Mother of All Charley Horses that woke me up at 8am. Hoping it'll help the stiffness when I breathe now too.

I get the feeling I'm not going to get any more sleep. argh!

I got woken up this morning by some impressive spasticity.

It was in my right leg, and in my diaphragm. Took some baclofen and that helped the leg, but my stomach feels bad...really tight, and making me feel like I cant breathe. I think I'm actually breathing, but the sensation in my diaphragm is really uncomfortable.

I called my neuro's office (he's not there till the 21st) One of the other neuros there called me back. (think I might be switching to this guy for my neuro) I chatted with him about the problem for a few minutes. He actually offered me more steroids (tempting!) or some Valium.

my dad, a nurse anesthetist, had actually said something about valium last night, that I should ask for some to use, since he thought it was better than ativan for some symptoms. I dont remember why my dad thought I should get some...think I was talking about the pain in my neck at the time. Apparently valium has a muscle relaxer in it. So when the doctor suggested it, (I'd forgotten my dad mentioning it till I was offered it) I decided to go for that. I was really tempted to do the 'roids, but hate the taste of those...and the side effects of prednisone really really suck and I didnt want to make my insomnia any worse than it is.

Hope I dont end up with a Rx drug problem from this stupid MS making me hurt/not sleep all the time. I just dont want to do 'roids again for awhile. Hate the taste of prednisone!

Erin,

Just wanted to let you know that I am thinking of you and saying a small prayer you feel better soon (in all ways). Fell better kiddo!

hugs
jane