In my cocoon

[tiredofsmiling]

New here.. trying to just find a place where I don't have to wear my "mask" and keep smiling...I am sooo tired of smiling through all the pain.. and I do mean PAIN. I am in constant "chronic" physical spinal pain.. treated by a infusion pump, oral meds..etc.. can no longer work. I am alone, unmarried ..no kids.. and when I am around friends I have to keep the smile on.. be "strong"..

No one really wants to know how I am.. keep smiling.. if they new the truth.. ? Not good..just not good.. and tired of pretending.

[Frame]

No smiling required here.

I was wondering how many hours a day you hooked up to that pump?
And hows your range of motion?
And what are you doing with your days?

[tiredofsmiling]

My pump is an inplanted infusion pump, catheter line is in my lower spine. The pump doses 24/7, mine has fentanyl in it. I take additional meds during the day for hreakthrough pain and Trazadone at night to sleep.

My main issue is my neck, as far as lack of range of motion. I am fused from c3/4 to c6/7 with metal plates and rods.

Asvfarcasvmy "day"..hmmmmm... I actually make it a point to exercise everyday.. walk my dog.. but truthfully, a good day to me is a day that I don't have to get in the car, don't have to run errands.. and don't have to "smile" for others pretending all is well.

Thank you for asking !

[Frame]

I think one of my semi-conscious assumptions is that when I learn of someone who doesn't get out much, I feel they must be getting bored, they must be primed for writing. I hope you do keep a journal and I hope you continue to write here.

[tiredofsmiling]

I've been reading some of your posts and you clearly are a thoughtful person in all you write to others.

Yes, I do get bored at times..I try to play online scrabble..love scrabble..! I am active in my church and have things I can do from home.. but the reality is.. I just don't feel much interest in anyone thing. I used to work A LOT... but have not been able to work for more than 5 years now. Losing the one sense of who you "are" is difficult for anyone. I've never been one that needed to have a lot of people around me all the time..classic introvert !

Having said all that, it is the waking up each day and wondering how much longer do I have to endure this ? Other than my 4 pawed buddy,
It's hard not to just say HEY.. I'M DONE.

Again..thank you for your comments.

[Frame]

Yes; I can relate. I'm in nothing like your position health wise, but for what ever reason I have really lost any passion for life. I think I'm reaching a conclusion that I've always had to work harder than most people to hold on to a normal life. I think I've always been depressed. There's really no excuse, but I can no longer accept how hard my life seems to have been. There's no excuse because I know plenty of people around me have had it worse. I guess. There's no logic for me here.

[tiredofsmiling]

Seriously, I don't think there is a one of us that can truley defin anything wecmay be going through or feeling with "Logic". Feelings and logic rarely go hand in hand..

What you said about not having or finding "joy", is something I have been struggling with for a very long time. I've done as good a job I can to hold things together for years now, especially once I have had the pain factor to deal with... but then, something happens.. that you can't control.. someone someones.. do something and it all unravels. There may never be any logic to any of it...but there are feelings.

There has been very few life moments of joy..real joy.. and right now, from where I sit in my life.. I see no "joy"..to come..just more of the same... so..I get it !

[4EverMe]

Hello tiredofsmiling,
Welcome to the forum. It's good you posted!

I don't blame you for feeling a bit resentful; No one should be under any pressure to show an emotion they simply aren't feeling. There's a difference between a smile worn out of kindness, and consistently wearing a mask that hides your true state of being. We're all human. No one should feel 'obligated' to smile to prove they are 'strong'. People tend to be drawn to others who smile and/or laugh all the time...to the point where they're always asking "What's wrooong??" when the smiler forgets to wear the mask! I met a woman in Mt. Shasta, Ca years ago. Whenever she'd walk into the club, she was always the one beaming. Because of that, she aquired 'friends' who wouldn't have it any other way. These people were pretty artificial. Anyway, after a night of partying, I wound up crashing on her couch. (She lived right across the street from the bar). The next morning, she brought up problems she was dealing with. How she was SO SICK of faking joy.

[4EverMe]

It kind of caught me off guard, because she was conveying an anger one would never guess was inside of her. Why she picked ME to vent to? I don't know. Maybe she felt like she could confide in me. By the time I left, that following day, she seemed thoroughly pissed about portraying an image--while, in truth, she struggled so much within. But I saw her again at the club, a couple nights following. She was smiling from ear-to-ear and everyone loved her for it! Everyone flocking around the life of the party...I felt sorry for her. No one knew how truly angry she was! Maybe also depressed? When she glanced over at me, she looked a bit uncomfortable, (even resentful) like...the secret's out. She knew she'd gained her popularity by wearing a mask. And I think she regretted ever revealing herself.

Some people, I believe, feel they won't be loved for just being themselves. If you have love in your heart (and if I TRULY have love IN MINE), I will love you without that mask!! This should be a lesson to ALL.

[4EverMe]

Hey tiredofsmiling,
Sorry! I surrendered to rambling in my last two posts. Guess it's important to me to try and support you on this. Some others might come to realize that just because one is often flashing their 'pearly whites,' it doesn't necessarily mean they're happy!

I also want to say that I can definately relate to the back pain. We don't have the exact same problems, but it's rough regardless! Degenerative Disk Disease is the cause of mine. So far, I've had two back operations. For those who don't know? DDD is a disease that starts in the lumbar spine and results in herniated disks/sciatica. Over a span of years, the herniations work their way up to the top of the spine. Surgery is usually required to fix this, but in time, new herniations form above the repaired areas. The surgeries were for the lower spine. It's my mid-spine hurting worst, now. Future operations are imminent. I DO know that herniations progress to the lower neck (causing migrains)! So, what happened w/yours?? Was it an injury?

[tiredofsmiling]

!!, DDD.. same as you ! Only for whatever reason, mine started in the neck..I've had 6 surgeries total.. because, as you pointed out, once onelevel is operated on and fused.. it puts pressure on the level above and below.. and they they go as well. Mine, went like dominos ..with one level needing to be worked on 4 times because the fusion wouldn't hold. And that is the "short" story ...LoLo

I appreciate your commenrs on the mask we wear... it is exhausting..I dont really see myself as the "party" girl mask wearer..more the, "wont whine and complain" mask... cause no one wants to hear how crappy I really feel and how depressed I am. Either way, it is exhausting.. and the best I can do is hide in my cocoon and try to keep the world out !

Thank you for your support...

[Alaska1958]

Hi there. I can't imagine living with the kind of pain you must be in. I've had a tough time over the last couple of years, but very little of it involves physical pain.

This can be a good place to spend time with people who can relate at least with the mental anguish you are feeling . I used to have a dog and they can be great companions and friends. What kind is he/she?

Good luck.

[tiredofsmiling]

Oooh Alaska ! Don't get me started on my 4 pawed BFF !! Seriousky don't think I'd still be here if it weren't for him. He is a terrier mix.. literally rescued from the street. He, like I , has alot of "issues" LOLOLO ... he landed in my life shortly after the pain pump was implanted.. and he has been there while I have been hunched over the toilet puking from my meds.. my migraines.. and just needing to be in my cocoon.

But, like I said, Don't get me started !!

[Alaska1958]

There are no better friends and companions than a dog that loves you. We humans should wish to be able to emulate their devotion. The only love we know that is close is a mother's love.