JC...HUGS!

Sometimes, when I read replies, I have to remind myself that each of us has our own interpretation of whatever the issue is.

"Better" for someone else might mean this difference between feeling great and having some pain. "Better" for someone else could be the difference between being able to go to the bathroom independantly or being bed ridden. As you said...No big deal right?

Personally though...your "better" still sucks big time and that makes things harder on you and your ability to deal. I hope I have that all correct. If I don't, please forgive me.

Regardless of the above... I don't believe that it is required for you to "fake it" every day, pretending to be more than you feel you can be at that moment.

I, too, try and be positive--even when I don't feel as much because it does help me to feel better, to feel helpful and to look on the brigther side.

However, there are many a day when I just suck and, everything around me sucks and I am waaaay down in the dumps. I post it. Sometimes, for me anyway, just being able to say how I really feel is more helpful than living in denial. Sometimes, it is all I can manage to say without throwing the damned computer through the slider door!

No matter what my friend... Please just know that there are many here who care about you, support you and will continue to do so no matter what mood you are in, no matter how you feel. I would be one of them.

Much hugs, support and respect to you JC!

I think I get it. Each month at PM, they ask how I am doing. Of course, I no longer have my cane, walker, and wheel chair so compared to others in the office, I am "doing better" Then at home, I struggle to clean up the mess the men in the family make so I can eat. I end up napping after each meal because (being men) they have no clue about what clean means!

THe world of normals uses these terms to mean "Feeling normal" NOT feeling better. We are not really better, just less than yesterday, or less than someone else. No one respects that we are comparing to others and trying to sound positive.

Better still stinks BIG TIME!
I would love to be able to have someone else wear my pain for a week and ask them if they want to walk around with it forever.
They would forget after three days so what is the use.

At therapy, I can't even punch the crudy punching bag to "vent" without fear of damaging muscles and not moving at all the next day.

I know you are trying hard to look normal so you don't get those fake sympathies. Wouldn't it be nice if someone had some honest sympathy for you each day.

Hang in there!!
OR
Just give up for today and say to hell with the world and spend the day whining and drinking soda.

God bless
Sunny

Geeez Sunny, I think we need to add a box of chocolates and ice cream to the party!

Honesty though, people on these boards are in such different levels of pain and illness that even here it is hard not to mis-state things or misunderstand things.

Being better today does not mean that tomorrow or even an hour from now I won't be in h*ll. CP is a constant roller coaster. This a.m. I was better I went out for my Birthday breakfast with hubby, I am now home and there is not enough pain meds to stop the increasing pain. It sucks.

Now here is the deal, everyone of us is entitled to our 5 minute pity party. Then we have to find the end of the rope and pull ourselves out or it becomes a very dark whole. Take a day, take a week, grieve, hit the pillow, scream, but make a deal with youself to get back up fighting when you are done.

Jan, we need you. We love you. We all want you to feel better and to continue improving. It is a long hard journey, that is why we are here to support each other. You do a great job of support. Now you need the support. We are here. Hang on. This part of the roller coaster ride is sh*t but hopefully the next hill will be easier.

Gentle hugs and lots of positive energy being sent to you. -RJ

I can so relate!!

When someone asks how I'm doing and I say better, they immediately assume I'm running around and they proceed to ask me so what are you "doing" this summer? As if I'm planning a trip or something outrageous like that.

So I'm trying not to use that word. I say I'm having a good day or a bad day or it's up and down, or I'm gaining some strength or something else that's totally vague and/or indecipherable.

But it's impossible to get away from the annoying responses and assumptions. People just assume things and it's so frustrating.

So I know how it feels and you're totally allowed to feel down and not up beat. It happens. It just does.

big hugs,
Ama

JC....everyone has already said what I was thinking as I read your message....please don't for one minute consider yourself "negative", even on your bad days you still share with us.....it's ok that you're stuck right now, vent as much as you need to...do for you what you would want each of us to in your shoes, please?

"Better" is such a relative term and as others have said, it means something different for each of us....you are precious just the way you are and we wouldn't trade you for anyone!!!!

(((((((((very gentle hugs)))))))))))

I'm just glad to see your Avatar, read your words, understand you more, and feel comforted that someone else relates to what I'm going through.

There is no temperature guage to measure this feeling inside of us, and it all gets muddled worse by the emotions attached.

I"m so sick of being me.

oh JC, a. it's so great to see you here, but 2. it's horrible that the pain has you pinned... III. we all know how much positivity you put out regardless of your pain....

i agree with others in that we can't compare pains...i'm pretty sure most of us wouldn't be here if it wasn't enough to look for a group like this...doesn't matter what kind or where it is - it sucks.

anger and grief are part of the cycle...in this merry-go-round (so to speak)...hope you can get through this. no, i know you will get thru this.

lotsa lotsa hugs and hope!

I hear you Jancam!

Thank-you for writing this post! I think many, if not all of us have been in a similar place at some time or other, but don't always express it, so I am glad you did :)

I think coming to terms with frustration/ sadness is definitely needed at times. I feel like if I push reality away all the time and try to be happy and cheerful and to "forget" when I am really hurting inside, I feel like I am sort of denying a part of myself just wants to grieve for what's going on at the moment, like Superduck says.

I feel like there's a time to move on, but that there's also a time to address what's going on in order to be able to do so. And Sunny and RJ you hit it on the nail there with CP complicating things because it is cyclic.You might tell someone one day you're feeling better, but they don't get it when you're lying on the couch that very night!

You will find your way back too, JC. I know you will! So many of us have looked to you in our own moments of furstration. You may just need this moment to come to terms with yourself!

Hugs!!

Thank you, everyone, as usual, for your great support.

Seems like these bummer posts are getting to be a regular thing with me..
Sorry about that..
But..it does help to know that you guys " get" it.

I think it added to the depths of this one that I just passed the three and a half yr mark of when pain became disabling to me.

I wonder..if someone had told me at that time..that it would be that long...and very possibly forever....if I could have gotten through it...

It's probably a good thing we can't see the future..:-)

Thank you all....hugs...jc

Jan my friend, I get where you are at and there isn't any shame in it!

What you are feeling i'm sure we all have felt many times. What doesn't help is to beat yourself up for what you do feel. None of us asked to feel pain and it's limitations every blasted day!

Us cpers keep going through the acceptance phase over and over again. Do we really ever accept it? Not really, but we do at some point make adjustments for it. We have to or lose ourselves too!

I've been grieving my lost life lately bad too. It's been almost 12 yrs for me, this last episode! I'm entitled to grieve and so is everyone else. We all live a hard life and put up a fight every day, we can have our days of not being superheros!

Much love and support,

Toni

JC,

Thank GOd that you post these bummer posts!!!!!!!
There are days that I leave without a word because I feel like this is all I feel lately. I feel the same about talking about it all the time.

There are days when really I don't want to continue. I don't want anyone to feel bad about positive posts but I feel even worse when no one seems to post about being in pain. SO I go away.

Clearly, it is better to be able to share the bad and the good.

Keep up the openings for those of us who are struggling thru the valleys of life just now.

God bless
Sunny

PS. Choclate makes me break out or I'd eat a ton and a half. And it is good for depression too. DARN!

Love this post, the honesty made me cry, but also know this is where many souls that " get it" reside......I'm bit like Sunny, I feel self conscious about really letting things out.

It is cyclic, Jan. I really believe this. I can think I'm finally in acceptance then I hit a wall. Being open about how desperate one can feel sometimes adds to the core of my sense of vulnerability.

But look at all the support that is here, overwhelming? Nothing like we get from " normals"...... I had some one say to me recently that I was well enough to travel , that I mustn't be that bad......I couldn't be bothered explaining that I had tried to do what a normal person can because a loved one needed me, I didn't bother explaining that I ended up on a Predisilone drip in a foreign Hospital etc, etc.

Every day I strive to be a Mother, wife, sister and friend. It is exhausting. I mourn the girl I was, mostly after I have tried to be normal to an extent. It comes with the territory. I know I'm sensitive to comment........

Jan, your true self done shine through, just like everyone that posts here. When I'm at my worst, I come to the boards and read about my fellow CP'ers, everyone of them, are a " Hero" to me. I might not post much, but I contribute where I can.

Surviving each day with the strength to recognize what serves us and what doesn't is a feat of it's own. Better? Well, I feel a little better in increments then I don't ....I tried for years to find a daily formula that works to my best advantage.....my daughter, just said, " you need to get out more", I just smiled. When I can get out, I do.

Life for a Normal observing us is just incomparable, if you don't have CP you just can't understand that simple well intended comments can pierce our heart.

CP can be relieved for " a time" , in that "time" it is surreal! I can't believe still that a continuity can't be found for myself and others.

But, here we are, warriors in life, love and CP normalities, together. Together, sharing and caring, we are strong and I think able to help all of us feel a little " better", just because we understand,

Love Lisa x

You were not rambling and you will find your way back, when YOU are ready to. When people ask me how I am doing, I now just say, I'm still upright. Period. Luvnhugs back to you. GramyBear

i did not read all the replies because i'm also getting the better talk, just in person. yeah... i got out of bed for two days... that's mos def better, but... c'mon didn't you see the 4 days i was down...

i don't usually go down. that coupled with the new mri from last month... better is actually not physically possible.

(without surgery..)



so, jc... your post is like a big "duh" to me. of course you feel the way you do about it. sometimes we all phrase things wrong. i'm just happy you got to the meat of it. one less hurdle, right?

Lisa, your reply post is beautiful, I must say!