I wish I could check out

At this point in my life, my children are the only thing keeping me alive.

If it weren't for them I'd have checked out years ago.

This cycle of meds, treatments, doctors, tests, meds, treatments, doctors, tests ... it's just never ending and while I know there are MANY out there that have it worse than I do, I have reached a point where every day is an uphill battle and I just pray that I can get to the end of it and go to sleep.

When I sleep it's the only time I don't hurt physically or emotionally (unless I have nightmares, which is often). I am in counseling and follow all my doctors' advice to a T.

My family and friends are so sick of hearing about me, I've started to pretend I'm okay all the time. When the pain makes me flinch, takes my breath away and makes it necessary for me to sit down, I quickly disappear into another room so nobody sees. I really don't have a choice, unless I want to end up without any of them in my life entirely. Personally that would be okay with me but it wouldn't be okay for my kids.

My husband has pretty much made it clear he doesn't want to hear about it. He rolls his eyes when I bring it up. I've been struggling with another chronic condition called PGAD, or persistent genital arousal disorder, which means that I'm constantly in a state of physical 'arousal' and there's never any release or relief. It's torture on top of the pain I'm already in. I'm getting treatment for it (physical therapy) but there is no cure.

Sorry to dump on you guys but I don't have anyone to turn to anymore. I also feel like, a lot of the time, that my kids would be better off without me. But if I did check out forever, I know they'd never get over it. So I'll just have to put one foot in front of the other. Other than that, I give up. I suppose I'll just try to be in as little pain as possible.

Healing vibes to all of you and wishes for low pain days ahead.

Dixie, thanks for your kind reply.

Yes, I do have a support group (therapy). But that's an hour a week. Aside from those times, I'm completely lost and alone.

I am going to practice my perfect happy face. And you know what, if people want specific things on the holidays, they can get it their dang selves. I do *enjoy* the holidays to a certain extent but this year, if it's not perfect for everyone, well, they can go to h-e double hockey sticks.

backtolife said...
This cycle of meds, treatments, doctors, tests, meds, treatments, doctors, tests ... it's just never ending and while I know there are MANY out there that have it worse than I do, I have reached a point where every day is an uphill battle and I just pray that I can get to the end of it and go to sleep.

Around here, I call it being "the happy little cancer patient from the brochures." And then my wife says she's supposed to be the "happy little caregiver from the brochures." And we vent and cry and complain, because life isn't like that, with all the tender or smiling faces, hand-holding, pictures of pretty trees, and promises that pain will be controlled and everything will be okay.

Instead, it's just what you said: a battle of struggling from one thing to another, hoping (but not too hard because one doesn't want to be too disappointed) that something might work this time. And then it doesn't, and you start over.

backtolife said...
So I'll just have to put one foot in front of the other. Other than that, I give up. I suppose I'll just try to be in as little pain as possible

Is there any treatment that a doctor has recommended, that seemed too drastic, too risky, too uncomfortable, or something? Would now be a time to talk to a doctor again and say I've got nothing to lose, maybe it would work? That's what I did, tried a medicine I'd been reluctant to because of the scary side effects but I was desperate, and to my surprise it worked better with less side effects than I predicted. But that's only good if there's something worth considering.

Even just doing what you're doing is a brave decision, because you'll be surprising others by seeming to be someone else. Will they treat you better or worse? Or not notice? Will you feel differently about yourself this way, better or worse or neither? Any change takes courage, even if it's just the change of trying to pretend around some people you're better when you're not.

I've always disliked holidays, even when I was in perfect health, because of the pressure to be perfect. Hope you can get through 'em. I wish there were more and better things to say.

btl,
This cp life is not for the weak. My family is oblivious to the level of pain I am in. Only my sister understands. I know it feels lonely but we are here for you. Anytime
Know that you have made a difference to others.
Thank you

I feel like I'd do anything for a way out of this pain. That's not a good feeling. I'm sure you've all been there.

Thank you everyone for your kind replies. It means more than you can know. Gentle hugs and healing vibes to all of you.

Can I go...Can I go?  Please, please?  I want OFF this (not) merry-go-round!

HUGS~~Dixie

Hi BTL,

Keep pushing, keep putting one foot in front of the other. We never know what may be just around the corner. While it may not be major pain relief, it may be a happy moment, a smile, whatever, something you would've otherwise missed.

I too am going thru lots of physical and mental illnesses currently. It usually seems like I could deal with one or the other, but not both. Got some new dxs recently too. Never fun. And preparing for major surgery (colostomy, hysterectomy with everything taken out, and bladder sling) in January (i hope))(no date yet, but docs said January is most likely).

For me, it's about taking one day, mostly more like one moment at a time. Can't deal with more than that right now.

I am so sorry you are having such a hard time and feeling so alone. We are here for you always. We will never walk away because you talk about your pain and frustrations. You are pretty much stuck with us. Wish I was there to give you a gentle hug.

Is there any way you can get a therapist to see 1 on 1? I know you mentioned a group therapy, but I think you would really benefit from having more time to talk to someone. Not sure where you live, but I know where I live, there are places you can call and get info on places with sliding scale fees if you can't get a therapist with insurance or can't afford the giant fee they would normally charge. Just realize that every therapist isn't meant for every person--if you try it and don't like the first one, don't' give up. It's just like finding a medical specialist, you won't agree with the approach that each one throws at you and won't "mesh" well with each one, no matter how good they looked on paper.

Not sure if you have a belief in God, but I do, so i'll say this anyway in hopes it does not offend….

I will be keeping you in my thoughts and prayers….my email address is available if you ever want to use it.

One foot in front of the other. Sometimes we may not feel any hope for ourselves, so right now, your children are hanging on to the hope for you.

Backtolife:
I am sorry to hear where you are at, but totally understand and have been there myself. I want to hope things will get better, but we really have no hope for 100% so it is coping. I am working on coping and smiling and not telling people how freaking miserable I am. I am seeing a therapist hoping somehow I can not just accept things on a logical level but deep down. We will see if it helps..... I do believe in God and have come to the conclusion that no one is going to fill the need I have except Him. And when I give myself time to go there I do find peace. I pray for peace for you. And just know there is this big virtual family out there for you, and who understands your pain. Hang in there my friend.

Wow,all of that must be overwhelming.I told my Mom the other day that I actually never feel good.I'm like you in that sleep is such a relief.

When I wake up around 5:30 am I know what's ahead of me.A couple of hours of feeling really bad.When I get some meds in me and something on my stomach I feel OK.

But the days are long.I take 16 pills a day.I think 9 different prescriptions just really confuse my body and my brain.

I wouldn't wish it on anyone.

But that's where I find myself today and I have to make the most of it.

I hope that things start looking up for you and you're able to find some comfort and hope.

Our lives are what they are.We have to play the hands that we are dealt.

God Bless You,

Rick

I have watched this thread and not posted. I couldn't trust myself not to anger or hurt feelings by my words but I have also watched you slip deeper into the rut so Now I'm speaking and everyone can just get mad and over it.

What antidepressant are you on and I hope your not going to say none? How can you look at those wonderful gifts that your baby's are and ever think your pain and issues are the bigger thing in your life then the love they have for you? Do you understand the deepths of their pain should they lose you? As for your husband? People outgrow each other everyday and if he can't deal with your issues that's his problem and what good is he to you, what does he actually bring to the table of your marriage if he can't live and honor the very bonds he swore to? That's his weakness and not yours and if he's coming to that table time and time again empty handed he only is another mouth to feed and not a worthy breakfast companion. There are people cut out to be the significant others in the lives of those who suffer Chronic pain and illnesses and there are those who are far to self involved to give up that ego of life having to always be about them. How dare anyone in my life and especially anyone claiming to love me lay guilt at my feet over something for which I have absolutely NO control or responsibility for?

If your going to live to survive this journey you are going to have to accept that this is as good as it gets and go from there. If you can't climb the blasted hill then go around,if you can't get around then go through and if you can't do that set up your house on this side.

Get mad, get even, but don't get beaten! There's always alternatives, always a solution once you throw away your expectation of what you think it should be.

I will say again the greatest thing about life is if you don't like the one your living then change it. If those changes are nothing more then the way you see it.

BTL everyone gets to this point in the beginning, however, don't let yourself linger in that mode very long. It will do more harm than good. There are many things we can change to make our lives better, you have to look deep within yourself to do it, its not something anyone else can change for you.

Forget about trying to make everyone around you understand your pain, they can't. Some may want to understand it & some may not. Look at it from this angle, you certainly don't understand your pain, so how can you expect everyone else to? You are not the only one mourning your old self, think about your husband, he is having to learn & accept the new you, your family & same with friends. This is affecting your husband just as much as it is affecting you only with him its in a different way. For him it is like he has been married to two different women. I don't know how old your children are but you can bet this is affecting them in more ways than you can imagine. If you are sick of thinking about your pain, how do you think they feel? People do get tired of seeing & hearing about it, its just human nature. You will find out who your true friends are & who are not & that's ok too. You need to get past the resentment stage & move on. Have you ever heard someone older say whatever you do don't ask so & so how they are doing because you will have to listen to an hour of every ache & pain they have? Don't let yourself become one of those people. The same with no one likes what we call the Debbie Downer.

My health issues & I have plenty of them that people at this forum have no idea about, is ever discussed with family, friends or the husband. It is too easy to fall into the trap when asked how are you feeling, I say I am fine & change the subject. If there is something urgent that needs to be known they are told & that is it. I do not want to sit around & tell them how rotten I may feel that day, it serves no purpose. They know I have issues & we leave it at that.

Pain is invisible to the eye. On the other hand if you break an arm or a leg & walking around with a caste on everyone says oh are you ok. If you cut yourself & are all bandaged up you get the same result. Why because its something they can see. To a certain extent they can even relate to something like that.

I remember you saying a while back that one of your drs thought some of your meds were possibly causing you some of these problems. It may be time to sit down & talk with that dr that told you this & go over all of the meds & see if some need to be discontinued or changed completely. Sometimes we can get a medication overload & they end up not working as they are intended & I have to wonder if this isn't happening to you. It is an easy thing to happen too. I have been there & done that & ended up eliminating many medications because it was too much of an overload.

If you are only getting counseling once a month you may need to change that to a weekly appt to get yourself out of this rut. Take care.

If your insurance will pay for counseling with a psychologist you may want to try to find one to help you out. I was very fortunate to find a lady that understood multiple medical issues & how to deal with the upheaval they caused in my life. She was totally awesome. It is real important that they know about health issues.

The holidays are facing us & that is a big trigger for many of us. Pacing yourself is something to be learned as well. Set goals daily that you can actually handle & be realistic about them.

Its not about pretending nothing is wrong physically, its about not letting it control your every thought. Get out of the house when you can even if its only to take a short drive. Load the kids up & take them riding around the neighborhood to see the lights. The more you can keep your mind busy the better off you will be.

There are a bunch of us that would love to have a 5-6 pain level, lol.

Hello BTL, I think everyone in chronic pain has been in the same situation at one time in their life, I was there myself. The pain was so bad and these doctors think your a junkie and won't treat your pain. Luckily for me my wife is a physical therapy assistant, so I get on the tens unit for hours, plus bio freeze works great too. You can buy the biofreeze on Amazon, get the roll on its easier to use. Holidays are the worst time for depression, there are more suicides during the holiday season, if I didn't have my daughter I would have checked out a long time ago. As for the tens unit I seen where they have belts that you can hook up the Leeds to for the tens unit. Don't check out this Christmas, think about your kids growing up without you. Try to have a merry Christmas for me ok ?