To Feel or Not to Feel-That is the Question!
 

...whether 'tis nobler to suffer and smile,
or give in to fatigue and give up for a while.
When one looks so normal and all appears fine,
and the secret of pain is secretly mine.
The pain... the burn... fatigue that will drop me,
to the floor, to colapse, to sleep, to rest, awe...there's the rub!:o

Yes, the rub is the fine line between when I have almost convinced myself from saying: I CAN DO IT, I CAN DO IT to hitting the brick wall and saying: NEVERMIND! :eek:

It's just that the brickwall comes out of nowhere when I least expect it... :( right at the time when everyone is saying "How great I look and how well I must be doing". I have been the great pretender for years and have gotten pretty darn good at it. So when I hit the wall, you may ask, "What's wrong?" to which I will (with automaticity) reply, "Nothing, I'm fine!"... OR (this one gets funnier all the time) "I'm just tired." :thud:

I vote for giving in.

naptime RULES!

:winky:

Sleep and rest always win with me. It's my body telling me to shut up and stay!:p I am talking while out shopping, at a party, at work, etc. Body says NO MORE, I do my best to honor it's direct order!:hug:

Kay and River,
I know you are both right... thanks! I'm still trying to find my way in the "doing what is best for me" scenario! Maybe I will get better with time.:rolleyes:
Thanks!

http://img530.imageshack.us/img530/7568/imagesyj1.jpg

:D:cool::D

Very good writing! I enjoyed it. Totally understand, and agree.

BTW, you look great! :D

Oooh! I love Hamlet! (the Mel Gibson version, not the Kenneth Branagh version, altho, Olivier was very good too...)

Your soliloquy was very good.

I just went shopping with my parents to get V-day cards for my nieces. My poor parents, they're both exhausted today, and so am I, but apparently I must have been doing pretty good, because my dad kept sending me to go grab stuff for him, while he leaned on my mom's shopping cart and waited for her to pick out some cards. My mom has chronic pain from a back injury and 2 knee surgeries, and my dad has an enlarged heart and high blood pressure.

I'm planning on falling asleep in front of the tv while watching Criminal Minds tonight. I think I have another hour or two of energy left in me...maybe, if I just sit here and stare at the tv for a little bit.

I feel exhausted now and dont want to move. My parents are upstairs, asleep in the living room. They tired themselves out by eating Chinese food and buying V-day cards at the grocery store. (oh, and my dad had a bad day working at the hospital.

I learned something, dont go to the grocery store the day before valentines day if you're really tired. Because it's really tiring to have to fight your way thru the crowd of people getting cheap (nearly) meaningless gifts. I swear, people lose most of their manners when it comes to last minute shopping.

i wish i could rhyme like that :cool:

i push a lot too, til i have to stop.
that's all you can do. once i rest i'm
good for the rest of the day.

you do have to take care of yourself and
pay attention to what your body says.
then you can help others.

I've learned to live WITH the disease rather than to keep fighting it. I find it much more tolerable and I don't mind letting people know how I'm feeling at any particular time. Why hide it? What good is that doing? Be yourself and quit pretending all is well when it is not.

I'm the same way - I do it because I don't want my kids to worry about me. So then, when something actually DOES go wrong they act surprised. It's my fault - I just don't want to complain all the time and I don't want them fretting over me.

My sister came down from VA last week and stayed with me. We had a death in the family and we had several days of non-stop going and doing. It wore me out but I was good at hiding most of the exhaustion. I felt like total crap the whole time she was here but never said a word. Before she left she told me "I'm so glad I got a chance to come and see you - I was worried over nothing! You're fine!" Grrrrrrrrr!!! :Bang-Head:

I agree. It took me a long time though to learn to stop saying I'm fine when I'm not. If I need a nap I take one, if I'm feeling crappy I deal with it in whatever way I have to. I do my best not to complain, I don't want to sound like a whiner, but I'm not afraid of letting someone know that I don't feel good.

And just what did that prove? Why not let your sister know? What the big deal about hiding what is reality? I just don't understand it.:confused:

To Erin,
 

Bless your heart! :Heart: Few people other than a fellow MSer would understand what you REALLY MEAN when you say you are "tired." Here is a :hug: . Try to get some rest, okay? :o Thanks for sharing!

Craig,
 

I'm working on getting where you are! Why are things never as easy as they sound??? :confused: It's probably that "attitude adjustment" I seem to recall having ordered... must be in the mail! :)

Thanks!

Kit,
 

:winky: Wow, does that sound familiar. The catch is, I've discovered they know more than you realize. Not long ago, before dx, when I got to work, my 17 year old daughter was in my office. She knew how horrible I felt even though I said I was "just fine". Someone came in and I put on my "just fine" smile and carried on a pretty good conversation. Even gave the positive "I'm just wonderful" type reply to "How are you really doing today?" When the person left my daughter said. "WOW, YOU ARE SO GOOD, MOM!" I said "Good at what?" to which she replied "Lying!" :Sigh:

This just confirmed what I had suspected all along....she wasn't stupid afterall! :Red eyes:Since then, I've been pretty honest with her. She is old enough to hear it and really wants to know the truth. Her age has a lot to do with it, but given that hindsight is 20/20, I probably should have been "somewhat" more honest all along...

Would not try to claim I have the answer to this... but hope it helps a little bit!

Maybe it would be okay for us to be a little more up front with how we feel, like with your sister... It's hard enough for us to understand and we are the ones going through it. I guess it's no wonder other people just don't get it.
:hug:

I don't know..... good luck! Thanks so much for sharing!

I was really tired and exhausted last night.

Wanna guess when I fell asleep last night? During Criminal Minds? No... During the 10:00 news? Nope.

During Hannity & Colmes? Nope..not then either.

During Red Eye? (on FoxNews at 2am CST) Nope.

It was somewhere around 445am...and then I woke up at 530am because my dad dropped something on the floor upstairs.

I finally dropped off to sleep again about 630am.

only to be woken up again at 8am when Shared Solutions called to harrass me about getting a new box of C (I'm trying to catch up there, I've been 2 boxes behind since the beginning because my injection nurse waited 2 months to call me before I got trained) I told them to call me back in 2 or 3 weeks, and to please not call me before noon.

I kept waking up about every half hour to an hour.

I'm starting to wonder if insomnia can be caused by a brain lesion or something.

I. am. so. tired. tonight...and I STILL cant sleep!!!! :mad:

It's kind of according to who I am around. When I'm with my kids and husband I try to be very honest. They would know anyway. But my Mom is different. Sometimes I have to be overly peppy or she will drive me crazy with questions about how I'm doing. But then she'll call me and the minute she hears my voice she can tell how I'm feeling. Somehow she just knows. Now my Mother in law is the opposite. I don't think she has any clue what it wrong with me. She has a hx of paronoid schyxophrrnia but is well controlled. Way back in the 60's she had a good bit of shock therapy which I think took away some of her brain cells. But unless I really look or act like I'm not feeling well she thinks I can move the world to take care of her. So sometimes I over excagerate.

Oh the insomnia. I think it must be contagious. I din't sleep at all last night, finally got up at 6 AM. Did you know there is actually TV on at that time? But here it is 11:30 PM and I am in my usual wakeful state that is between 7 PM and 1 AM every day. It doens't matter if I didn't sleep any the night before or not.

For trying to explain the wall, I wish I could have a copy of a scene from "Charlie and the Chocolate Factory" with Johnny Depp. It's the one where Willy Wonka is talking to Charlie at his shoe shine job. Willy runs into the wonkavator that you didn't see was there.

It's been hard learning where that line is. It moves everyday, so sometimes I know it's coming - sometimes I don't. Definitely learning to listen to my body. It knows things better than my brain does, LOL. :rolleyes:

That's awesome! I'm going to steal it if that's ok because it explains way better than I can and succinctly too.

si, si, Senora!

this morning, I felt my eyelids growing heavy... and my head starting to nod and droop.

looked at the clock, and it's only 9:30 am!

how can that BE?

oh yeah... it must be 'cause I woke UP at 3:30am.

so, I'd been up for the usual SIX hours already, and my BODY knew it!

usually, I get up around 6, and nappy at noonish.

some days, TWO naps... sometimes my body only needs an hour.

yesterday my nap was *four* hours... (which goes a long way toward explaining WHY I woke up before DAWN today, eh?)

oh, and Finny?

it's ALL completely and totally YOUR fault that I'm now singing Olivia Newton John!

'cause you mentioned listening to your body.

:D

Kay wanders off, muttering under breath and singing:

Let me hear your body talk... your body talk... Let me hear your body talk.

:o

ahhhh!!! I cant get that song out of my head now!! *banging head on desk to make the music change*

Last week I had "Waltzing Matilda" going thru my head all the time. (and I'm American, not Australian) That's actually a cool song and much better than having an Olivia Newton-John song drive me nuts.

I found a new theme song for MSers. It's by Weird Al Yankovich. It's a duet with him and Kate Winslet (yes, THE Kate Winslet from The Titanic...she should stick to acting)


The name of the song is "I Need A Nap".

My boyfriend gave me a copy that he bought off of Napster. He told me that when he heard it, he thought of me.

Erin,
 

Just now getting back to you.... so sorry about your lack of sleep. How have things been the last few days?:hug:

DH's knee hurts right now (like mine doesn't 24/7?), so while he whined, offered him my walker. That shut him up. I look good, I treally do!!!

has anyone tried amitripyline? also q's about meds and insurance
 

i am new to this but have not been sleeping. on wed reg doc subscribed xanax to temporarily get me through this--my sister freaked and said asked for something else...neuro gave me amitripyline for sleeping...but it the online description says it is for depression (have had plenty of that over the past few days).

just got back from the big blood work up at my hmo--7 vials of blood--now feeling very lightheaded! (yuck--but at least open on sunday) another question--do any of you have probs with cost of the meds for ms? my neuro suggested i look at the options and now i have another thing to worry about--what appears to be the super high cost of this maddening disease...

Dear Volada,
 

I know how you feel about having another job in choosing a med, when your energy is depleted and you are probably still in shock with the dx. I don't know a lot about the cost of different ones. :Dunno: I just got started.
Still waiting to here from my insurance.

:hug: Hang in there!

yes, especially when I was still working....

I made too much to qualify for gov't aid (Medicaid) and didn't have medical insurance coverage.

my "MISTAKE" was to get Optic Neuritis (and have it in my medical record) just BEFORE I got divorced...

MS turned out to be an "automatic decline" when I tried to get my own insurance.

there are private programs to assist with the DMD costs, ask your doctor, or somebody here probably knows what's available in your area.

that's how I paid for my Betaseron.

and good luck, Volada!

i have an hmo--so i should be ok--i think!???
 

thanks for your msg and sorry for your troubles!
but i hear what your saying and it is good to know--hopefully this won't lead to divorce for me but i am truly annoyed by my "beloved's" reaction --he seems highly inconvenienced and not really supportive in the way i need...we shall see! having two little kids is hard enough but with ms and working full time-- i sense extra challenges coming on