I AM AFRAID

Just wanted to say I am sorry you are feeling so bad. Pain and medical stuff in general can just get so exhausting and overwhelming cuz it doesn't ever want to take a vacation. I'm not going to pretend to have some really great solution for you, just wanted you to know that I care.

I see you list depression and anxiety in your signature, makes perfect sense. Have you spoken to your psychiatrist or a therapist recently? I'm guessing you already know this, but just in case not, maybe you would want to seek out a therapist that specializes in chronic pain or chronic medical conditions...and maybe it's time to think about starting/changing/increasing an anti-depressant. I know those things will not solve the problem, but they may help to give you some quality of life back. Really wish I was there to give you a very gentle hug.

For myself, I know I have been stressing and depressed about medical "junk" for pretty much my entire life. I am 36, and have been on meds for depression and anxiety (mostly due to undiagnosed medical stuff that messed up my life) for over 20 years now, and pain meds for 16 years now. And the problems just keep piling up. Recently, I sort of had an "awakening" and found a new outlook on things. I made a list of the things I could do that I might find enjoyable (everything from a 1 hour art class that even a 5 year old would do well at to a list of funny movies to finding new places to people watch). Nothing earth-shattering or too strenuous or expensive, but just trying to have that list handy so when I feel really bad and just wiped out, I can at least see the list of things that help motivate me to keep going. I mean, it gives me something to sort of look forward to. But all realistic stuff.

Last couple of days, nausea, pain, and not being able to sleep is really kicking my butt. On steroids for a week after nerve burning on one side of my lower back, and had to stop a sleep med so I could increase my Zofran during the daytime. Frustrating. I've been super crabby and irritable because of all this. Yesterday, I was not the kind of person anyone wants to be around. Stopped at my parent's house, and when I was leaving, Mom said "say your prayers" to which I responded "what's the point?" That sort of stopped me. Clued me in that I am not my "somewhat normal" self right now. I know if I can get some of this medical bologna out of the way, or at least more under control, I'll stop being irritated by every thing that does and does not happen. I think all we can do at times when we are so overwhelmed is to figure out 1. what can i do to make this moment better?, and 2. what's my next step? (not a big step, just a teeny tiny one).

Please do not give up. You mention you are new to this site. Give people some time to respond and share their thoughts with you. Let them show you that hope is there for a better life, even if you can't see it right now. If you haven't yet, please talk to your doctors and tell them how bad you are feeling, not just physically, but mentally and emotionally as well. They need to know what's going on to help you. They need to be treating all of you, not only the physical pain. I am so sorry you are struggling.

I have been at that point of wanting to give up, of feeling that I'm just "done" with it all. I would guess a bunch of us on this forum have been there. That's when we have to lean on each other.

If there's anything I can do to help, please don't hesitate to let me know. Sending you kind thoughts and very gentle hugs.

Hello Dixie! I haven't had a chance to welcome you here to HW even though I read your intro thread! I had a virus that literally kicked my rear! I just wanted to welcome you before I said anything else.

If you have read here often you will already know that there are many of us who've fought this CP battle decades and although we can't offer you an instant cure, a magic pill, or a earth shattering surgery, we can offer you HOPE! Through experience, trial and errors, and yes sometimes buckets of tears, many of us live fulfilled and gratifying lives with Chronic Pain.

I had a 30 yr nursing career, 4 children under 10 and a 2 month old infant when I stepped on this roller coaster ride! 6 surgical procedures my 1st year, hospitalized 4 times,lost my Mom and then my Dad and all in that first year! My husband made it through until the second year but then I took over the battle alone.

I'm not going to run you through the next 16 years simply because I don't like recalling them and it would serve no purpose, most of the story is archived right here through my posts at HW if you were to be interested.

What counts is today and not so much the roads I took to get here but rather the vehicles I used. I like you felt the very meds I was using were robbing me of well life! Who I was, how I thought or didnt, and rest assured it doesn't have to be that way! Your meds shouldn't be taking away anymore then your pain. If they are they're not the right combination for you.

The best advice I can give you and this motto comes from the voices of experience and those who attended the school of hard knocks, "Educate and Advocate " suck up every piece of information available about your diagnosis, Drs, therapy, medication, research, pharmacy, all the things now your life revolves around! Know what your options are always! Set out to assemble the best team of Drs, therapist, Rph's, counselors, surgeons, specialist, etc that you have a good comfortable relationship with, willing to work with you as well as with each other and open to allow you a voice in how to best treat your CP to bring you to the Best place quality wise they can.

You have to educate so that you can advocate to obtain that better quality of life. To do that takes a whole entire way of thinking about and interpreting your pain and setting goals and expectations that are reasonable and reachable and all of that comes after you find that counselor who fits in your team to show you ways to accept your life may not change but your view of it can! You learn how to accept that pains not ever leaving you so you work with it, around it, and diminish it by doing so.

My meds alone would put me under the bus, they are only small entieties in my battle and once I stopped expecting them to do it all and took some of the responsibility life looked better.

I virtually changed the way I exist right down to cleaning house! You find ways to work with what you've got and make the rest work for you Dixie. Most important is that team effort and finding them, ridding yourself of those who dont have the same goals as you, getting you to a place where you don't feel like this about your life!!

Dixie, I think at one point & time a lot of us here have been where you are at. Accepting & living with chronic pain is a very bitter pill to swallow. It is ok to have those feelings but just don't linger there long.

I don't know how long you have been on your antidepressant, its its been awhile it sounds like it is not doing its job. Like any medication we take long term we can build up a tolerance & it stops working as well. I don't remember what pain meds you are on but I do know that some pain meds will interfere with an antidepressant in how it works. I had no clue about this until my prior PM dr told me this. I was on something but so depressed, it was because of the pain medication in my pump working against it. She changed me to something difference & it made all the difference in the world.

Some pain meds can make you feel like your life is being sucked out of you too. That may be something to look at.

It is real easy to become isolated. I had to make myself get out of the house even if it was going to a store to just walk around. My DIL went back to work this past April after being home for almost 9 yrs after having our grandson. I started picking him up from school & ended up keeping him pretty much all summer. This has been the best medicine for me ever. It gets me out of the house & out doing things.

Keep in mind you have a very supportive husband who places an extremely high value on you & for that you are very lucky. Many spouses do not get it when it comes to health issues. Concentrate on the things you can do, there are many things you can still do, you may have to do them a little differently but thats ok too. But most of all, I try to remind myself there is someone else out there a whole lot worse off than I am when I start slipping a little.

Getting things out in the open helps rather than keeping it bottled up inside. We all miss having friends, I am talking real friends. I would rather have one good friend than a hundred acquaintances, big difference. Look around for some kind of classes in your area for a hobby type of thing. Those can be a good place to meet & makes friends.

Take care....

Sounds like a rough night Dixie, so sorry to read about your fright but I do understand it. Myself, I'm just worn out waiting for this cancer to do its thing so I can call it quits. I really don't have any fears as I've made my peace with life and like you say am now going through the motions. It's hard to get interested in things, isn't it? I mean we feel like crap all the time so why bother?

That's my main mode of life but I carry on anyway, no use slamming the lid myself. This Fri. Starts another round of testing for me, blood work-easy- then CT And bone scan- lots of radiation and waiting in uncomfortable places with other sick people to cheer me up, lol.

I'd like to help you take the fright away, tell you that there is nothing to fear but that is a place you have to find for yourself . . . Big help, I know. When I wrote that I have made peace, I mean to say that I've accepted my future is gonna be more of this lying in a dark room . . . Really I've just gone right ahead and told myself that this is my future and that is that. I am addicted to these net pain channels though, they really help me get my mind out of the darkened room. Hope that me sharing this with you lets you know that you aren't alone in your these thoughts. My wife is so loving, the only thing I'll miss, but I know it's a drag watching me day by day but we manage quite well somehow.

She's not in quite as much pain as you but a definite CP, I tried these sites to help her out and maybe she will join HW but last time she got in a tangle over religion and called it quits. She's a staunch atheist and gets upset when people tell her it's Gods will. Me, I am spiritual in my own way and that's all I have to say on that subject. I'm not the sort of person that writes real cheery replies, huh? Well, that's me.. I do so hope that today or whenever you will have a good day, I still have a few left in me, I look forward to them. . . . Q

Hey Y'all...Thank you for your kind responses.  It means a great deal to me that y'all would share your experiences with me.  Yes, I am new to this sight, but I am NOT NEW to physical and emotional suffering.  I hit the "highlights" in my signature, because I didn't want to belabor the point.  I have soldiered this path with boots on the ground for most of my life...even when I was face down in my own vomit (for 3 years post-gastric bypass).  Q...You will find that I'm not a "marshmallow world" kind of gal, either. I appreciate your candor.  I also appreciate the "coping skills" suggestions of others.  I've done it all, believe me...PT, PFT, injections, chemotherapy, tumor-suppressing meds, 4 surgeries (no HRT or add-back allowed) chiropractor, traction, TENS, biofeedback, cognitive therapy, visualization...wailing and gnashing of teeth.  I am the master of distraction.  I've spun all of the proverbial plates to keep the façade of "all is well".  I'm the one who's called in a crisis...but rarely just to say "hello, how are you?" That applies to FAMILY, neighbors, community, pastor, church family, et al.  I have no doubt that I'm "needed"... I simply want to be wanted...just to sit and talk, laugh and/or cry, share both trials and triumphs. I need a wing man, but am forced to fly solo. 

I've laid in a hospital bed near death more times than I can count, completely ALONE.  I've yet to experience the cinematic surroundings of loved ones at my bedside, in a room exploding with flowers and cheerful balloons.  My darkest times have been in the glare of harsh fluorescent lighting (which I loathe) where on a good day, I lay flat of my back (incision from breast bone to pubic bone) and counted the perforations in the ceiling tile, to "distract" myself from the pain and hopelessness.  I ordered flowers and cheer baskets for myself so that at least my room (and I) didn't appear so desolate.  Pathetic, right?  You ask "where was your husband?"  I'll save that for another conversation.  You ask "where was your family?".  This wasn't an OOPS isolated incident...this was always...and every time I have been hospitalized.  I made excuses for their absence because I couldn't face the truth.  I had/have devoted my life to family, yet that devotion is not reciprocated.

Dixie 

 

Abilene...You have encouraged me, sweetie.  Kudos to your desire to visit the senior center.  I have a deep and abiding love for our greatest resource which is our elderly.  I feel that they are often the throw-aways in today's society of youth, fitness and beauty.  We spend our youth and middle age trying to be successful.  We spend our elder years just hoping to be significant.  There is a great need for fellowship, love and laughter in what can be VERY SAD places.  Thank you for your post and let me know how your visits go=)

Meanwhile, I hope you have a restful, pain quieted evening.  HUGS. 

"Un-needed noise"...I like that expression.  Unfortunately I think it describes my posts=)  You crack me up, Q...and laughter is no doubt the absolute best medicine.  I wish I could blame alcohol or drug use for my parent's evil ways, but NOPE...there was NONE.  Perhaps drunkenness could explain their abuse, but that's not the case.  It is beyond amazing that 6 children not only survived, but have thrived.  Not one of us smokes, drinks, or uses recreational drugs.  Now...I have an aunt that keeps vodka in her Dassani bottle, but thinks she's being suave;)  I've never viewed the bottle as an escape, because from an early age I witnessed addiction (both legal/illegal) in my extended family.  That is the basis for my unwarranted fear of opiates for pain management.  I cannot obtain relief because I fear the consequences of the doses needed.  I digress.

I laughed out loud at the hammer incident...I am a very visual person, so I can see you discombobulated in the woods.  Believe me, I can understand the OOPS that occur when tools are involved.  My husband fears my self-destruction, as I prefer Dewalt over diamonds any day.  If my body hadn't betrayed me...I would have been on the physical "hands on" side of construction.  I have no fear of pneumatic nailers and compound miter saws.  As for the water line explosion...I can visualize that, too.  We had such an unseasonably cold winter that our exterior faucets blew multiple times, and our courtyard irrigation system was shredded.  My husband is somewhat of a DIY with PVC, so he gets plenty of practice around here.  He tries to keep a system maintained so that I don't have to physically water my extensive flower garden.  Otherwise, the blooms of my labor would have gone bust this summer.  The shingles in my eye have kept me a prisoner from the sunshine...

  Thanks Q...I hope I can bring you a chuckle in return.  Your strength and courage to endure in the face of adversity inspires many...especially me.  I appreciate your support and encouragement.  I hope I can offer the same for you!

We do the best with what we have, don't we? 

 

Okay...lame as it may be...

What did one casket say to the other casket?

                 Is that you coffin' ?

                           

I guess my posts are too heavy, so I'll lighten them up a little with my dark sense of humor. I promise I'm not all bad! 

I'm so sorry and I can relate to it being hard to just wake up everyday. But you are, and your hanging in there. I"m proud of you. Living with constant pain is so hard. There are a lot of strong people on here that can help you, and understand.

do you think its adhesions on your intestines/pelvic floor that could cause some of the pain? I have some pain from scar tissue and adhesions(nothing like your describing though).
I use an essential oil that really helped my Endo symptoms.

just wanted to check in and say I"m sorry and that you are not alone, even though the journey can be very lonely.
Find someone you can talk to and something that brings you Joy.
For me it is my niece. Maybe a craft or good movie, or family member/friend

Thanks for the funnies, for the support, and for the suggestions for prescription help.  I will certainly look into it.  I do hope that each of you has a night filled with restful sleep rather than rest-less pain=)

Dixie

I had a stress test today-very stressful so I guess it was a success. I just started wearing a CPAP for sleep apnea yesterday. My husband says it is also a success-peace and quiet and breathing all night long. Mission accomplished. Thanks for the restful sleep wish. That was just what I needed.