Aa
Belonging
I've been MIA for a few days now and I wanted to apologize and let ya'll know that it will be a few more days probably but I'm still around and for those that have neurostim trials or questions, feel free to let me know and I will answer them. I've been having a hard time. The hubby has gone back to his usual ways so between him calling my ideas stupid and things of the sort and the pain getting to a point that I can hardly stand it, like I said before I withdraw from society when things get back and I just can't seem to find my place. I just don't know where I fit in. I refuse to be the complainer. The one that constantly is complaining about being in pain. And things are not going well for me in my marriage so I feel like I have nothing to give. Occasionally on the really hard days I'll send my mom a text message but here lately she tells me she's going through some depression issues herself and she says I'm welcome to send her text messages venting as long as she doesn't have to respond. But I need her response. I need someone to tell me everythings going to be ok. The only true girlfriend I have got married this summer so she's preocupied doing her own thing.
How do you guys manage to stay sane and keep plugged into society when there's constant desperation inside?
How do you guys manage to stay sane and keep plugged into society when there's constant desperation inside?
You guys are the BEST!!! THANK YOU SO MUCH!!! I had a great time with my mom. After she left my pain skyrocketed but for the first time every my hubby nursed me. I layed on him while he massaged and iced my abdomen for a couple of hours till I fell asleep and then he carried me to bed. He's NEVER done anything like that. I woke up this morning feeling very blessed. Blessed that maybe just maybe he's starting to get it. Blessed that I have a mom, blessed that she and I are as close as we are even though I miss her sometimes. Blessed that I have two beautiful HEALTHY little girls that mean the world to me. Blessed that they can make me smile when I feel my worst. Blessed that my youngest very frequently asks me if she can cuddle with me when I'm laying on the couch. Blessed that I have a job I enjoy and I am still able to do it even though it leaves little energy for after work. Blessed that I have a home that I can call my own. Blessed for so many reasons. While I have been too angry to step in a church in the last 5 years maybe that too will pass and maybe just maybe I can reach acceptance sometime. I still 5 years in have not been able to accept what is going on with my body. But I have hope for peace in the future.
I wish ALL OF YOU MANY MANY BLESSINGS TODAY
I wish ALL OF YOU MANY MANY BLESSINGS TODAY
mellie, I used to get frustrated and angry about lack of understanding too. Finally I realized it didn't make one dam bit of difference to my pain if "other people" understood it or not. I still hurt regardless. LOL!
A big part of my therapy involved NOT focusing on ME and my pain so much. I came very close to becoming my 'disease', if that makes any sense. Life and everything in it revolved around my pain. No wonder nobody wanted to be around me! Any relationship is a two-way street and all I focused on was my pain and illness. Boooorrring! The more I started behaving like my old self and forcing my mind off pain, the more I was able to ignore it and actually start living again. Kind of a "fake it till you make it" device.
Our usual expectation when dealing with a health problem is that it will be quickly identified (diagnosed) and then fixed (treated successfully). In general, that is exactly what happens. But - the sad fact is that medical science really can't cure all illness. To this day I have family members and friends who say, "Why aren't you fixed yet? Why haven't you tried X treatment or seen Dr. X?" Nobody wants to hear that anything is impossible when it comes to health. We've all been conditioned to a certain extent to believe that we can control our bodies and somehow stop them from wearing out or becoming ill. It's a fantasy. Sure, there are some things we can do to slow down the inevitable ravages of time, but eventually something outside our control is going to nail us all.
Sometimes people make it clear that chronic illness is somehow my fault or that I just haven't searched hard enough to find the "right' doctor. ANYTHING but face the fact that medicine simply has no answers for me right now. After all, what if the same thing happens to them one day? Their own faith-in-medicine fantasy bubbles get burst too. Better to point the finger at the patient than contemplate a legitimate chronic illness coming for them one day!
I've done pretty well educating the important people in my life about chronic pain and distraction techniques, meaning I don't want to talk about my pain all the time. There is far more to me than pain and illness. Some are hopeless and some have been pretty hard nuts to crack - like my mother-in-law and cousin. I don't expect them to EVER understand the reality of my life, and it really isn't important that they do. The one thing I do need from them is acceptance that chronic pain is as much a part of me as the color of my eyes and hair. It simply IS - good, bad or indifferent. Telling me that I haven't tried hard enough to find a "cure" is exactly like telling me I can change my eye color - if only I'd try harder.
If I have to cancel some preplanned event at the last minute, I don't want them to take it personally. One analogy I've used fairly successfully is to have the person think of Chronic Pain as a 2-year-old child. Sometimes that child throws a temper tantrum and needs to go to Time Out and everything else has to wait until the issue is resolved. Would they ignore a child throwing a tantrum and pretend it's not happening? That analogy is particularly effective with mothers. LOL!
Try not to let other people's perception get you down, and for heaven's sake don't let someone else define who and what you are! If they insist on painting you as a malingerer, so be it. Boot 'em out and move on. Trust me, it gets easier with practice. ;-)
A big part of my therapy involved NOT focusing on ME and my pain so much. I came very close to becoming my 'disease', if that makes any sense. Life and everything in it revolved around my pain. No wonder nobody wanted to be around me! Any relationship is a two-way street and all I focused on was my pain and illness. Boooorrring! The more I started behaving like my old self and forcing my mind off pain, the more I was able to ignore it and actually start living again. Kind of a "fake it till you make it" device.
Our usual expectation when dealing with a health problem is that it will be quickly identified (diagnosed) and then fixed (treated successfully). In general, that is exactly what happens. But - the sad fact is that medical science really can't cure all illness. To this day I have family members and friends who say, "Why aren't you fixed yet? Why haven't you tried X treatment or seen Dr. X?" Nobody wants to hear that anything is impossible when it comes to health. We've all been conditioned to a certain extent to believe that we can control our bodies and somehow stop them from wearing out or becoming ill. It's a fantasy. Sure, there are some things we can do to slow down the inevitable ravages of time, but eventually something outside our control is going to nail us all.
Sometimes people make it clear that chronic illness is somehow my fault or that I just haven't searched hard enough to find the "right' doctor. ANYTHING but face the fact that medicine simply has no answers for me right now. After all, what if the same thing happens to them one day? Their own faith-in-medicine fantasy bubbles get burst too. Better to point the finger at the patient than contemplate a legitimate chronic illness coming for them one day!
I've done pretty well educating the important people in my life about chronic pain and distraction techniques, meaning I don't want to talk about my pain all the time. There is far more to me than pain and illness. Some are hopeless and some have been pretty hard nuts to crack - like my mother-in-law and cousin. I don't expect them to EVER understand the reality of my life, and it really isn't important that they do. The one thing I do need from them is acceptance that chronic pain is as much a part of me as the color of my eyes and hair. It simply IS - good, bad or indifferent. Telling me that I haven't tried hard enough to find a "cure" is exactly like telling me I can change my eye color - if only I'd try harder.
If I have to cancel some preplanned event at the last minute, I don't want them to take it personally. One analogy I've used fairly successfully is to have the person think of Chronic Pain as a 2-year-old child. Sometimes that child throws a temper tantrum and needs to go to Time Out and everything else has to wait until the issue is resolved. Would they ignore a child throwing a tantrum and pretend it's not happening? That analogy is particularly effective with mothers. LOL!
Try not to let other people's perception get you down, and for heaven's sake don't let someone else define who and what you are! If they insist on painting you as a malingerer, so be it. Boot 'em out and move on. Trust me, it gets easier with practice. ;-)
I go back and forth through anger, depression and acceptance. Lately it's been anger and depression. When you don't have good support, it makes it all the more difficult. I don't really have much. Most of the time I'm okay with it, but when the pain escalates, it's hard.
I'm a big believer of venting. I don't think venting is complaining at all. It's not even looking for a solution or sympathy but sometimes you end up with both. Or empathy may be better. Everyone here can certainly be empathetic to everyone else.
My boyfriend has chronic pain since 2007 with 3 herniated disks from a work-related injury. He's a mailman and he still works (though on light duty ... which is really a joke.) I have no idea how he does he job every day. (I wish he would come on here to see it's not just the two of us in the CP boat.) What's good is usually we're not both down at the same time. On the downside, he doesn't live all that close and between my 4 kids and his 1 we only really see each other once a week, sometimes twice. But we talk on the phone, text, etc.
One good thing he reminded me about the other day is that most people only believe what they see and know. Which means most people DON'T understand CP. They don't understand our pain or our pain management.
I'm sorry your mom is having trouble, too. My mom was a CP patient for many years and really had little treatment for it and less support. She died 4 years ago and I miss her every day. Even though she was 82 and in pain, she was always there for me. To have lost her has been devastating to me.
Continue to vent ... and try to be kind to yourself. I think as moms we tend to always put ourselves last.
You've had great responses here. Hope your card game helped!
I'm a big believer of venting. I don't think venting is complaining at all. It's not even looking for a solution or sympathy but sometimes you end up with both. Or empathy may be better. Everyone here can certainly be empathetic to everyone else.
My boyfriend has chronic pain since 2007 with 3 herniated disks from a work-related injury. He's a mailman and he still works (though on light duty ... which is really a joke.) I have no idea how he does he job every day. (I wish he would come on here to see it's not just the two of us in the CP boat.) What's good is usually we're not both down at the same time. On the downside, he doesn't live all that close and between my 4 kids and his 1 we only really see each other once a week, sometimes twice. But we talk on the phone, text, etc.
One good thing he reminded me about the other day is that most people only believe what they see and know. Which means most people DON'T understand CP. They don't understand our pain or our pain management.
I'm sorry your mom is having trouble, too. My mom was a CP patient for many years and really had little treatment for it and less support. She died 4 years ago and I miss her every day. Even though she was 82 and in pain, she was always there for me. To have lost her has been devastating to me.
Continue to vent ... and try to be kind to yourself. I think as moms we tend to always put ourselves last.
You've had great responses here. Hope your card game helped!
Hi Sweetie: There is a wonderful post somewhere that is actually about having a child with disabilities. However, it does speak to anyone whose life has taken an unexpected turn and all your dreams must be dismantled and reassembled.
It goes something to the extent that you wanted a tropical vacation. You planned for this. Lost weight, went to the tanning salon and bought an entirely new tropical vacation wardrobe. You are so excited as the plane takes off.
Now the plane lands and surprise. You're somewhere in upper Norway. So what do you do? Lay around and feel sorry for yourself? Probably for a while and then you adjust. There's no plane home for a long time. You restructure what you want and get the things you need for your new life..
Anyway, that's sort of the gist of it. I know it spoke to me. I surely didn't expect to be here. None of us did. And you are so young. At least I was in my 40's when this started in 1995. I had some relief from surgery for a while. In 2002 my neck went out and is still after me. Adhesions came roaring back directly after my 2003 surgery to release them. Within a month I was right back where I started and then I began pain management. I still don't like it but have had to adjust my activities, wardrobe and food.
Adjust to seeing doctors all the frigging time. And more pills than I care to even think about!
Do consider a light anti anxiety medication. You'd be shocked how much stress increases your pain. You don't have to get something very strong or even take the whole pill in some cases. Ask your pharmacist about whether you can split a pill. But do what you need to do to get out of as much pain as you are able to handle.
Good luck sweetie!!
Sara
It goes something to the extent that you wanted a tropical vacation. You planned for this. Lost weight, went to the tanning salon and bought an entirely new tropical vacation wardrobe. You are so excited as the plane takes off.
Now the plane lands and surprise. You're somewhere in upper Norway. So what do you do? Lay around and feel sorry for yourself? Probably for a while and then you adjust. There's no plane home for a long time. You restructure what you want and get the things you need for your new life..
Anyway, that's sort of the gist of it. I know it spoke to me. I surely didn't expect to be here. None of us did. And you are so young. At least I was in my 40's when this started in 1995. I had some relief from surgery for a while. In 2002 my neck went out and is still after me. Adhesions came roaring back directly after my 2003 surgery to release them. Within a month I was right back where I started and then I began pain management. I still don't like it but have had to adjust my activities, wardrobe and food.
Adjust to seeing doctors all the frigging time. And more pills than I care to even think about!
Do consider a light anti anxiety medication. You'd be shocked how much stress increases your pain. You don't have to get something very strong or even take the whole pill in some cases. Ask your pharmacist about whether you can split a pill. But do what you need to do to get out of as much pain as you are able to handle.
Good luck sweetie!!
Sara
There is something particularly hope-dashing about being young and in CP. I see pictures of friends having fun, doing fun things and think "Oh that's looks fun, I wanna do that", only to come to the realization that I can't do those things right now. Like I love horseback riding and would love to take my kids to do that, but then I'm like "Silly me, what the heck would that do to my neck?"
I know the pain and disappointment, emotionally, that comes from pain and issues physically.
Please just know that you're not alone in being too young to be in CP.
I know the pain and disappointment, emotionally, that comes from pain and issues physically.
Please just know that you're not alone in being too young to be in CP.
Thank you Tuck. I think that the nerve block not working and then hearing that I shouldn't get the neurostim leads placed for ab and IC pain but having to choose set me back. I try to stay as positive as I can and some of the people I no longer talk to are those "negative nellies" that constantly bring you down with their pessimism. Those I have purposely deleted out of my life. Every try at something that may help I try to go into as positively as possible. My hope has been crushed time and time again but I can't give up. I can't think that this is going to be it. There has to be a less painful future for me. I do have a plan of action and that helps but you begin to think what's the point in building up so much hope just to have it knocked out from under you when something doesn't work. But I've got to keep going and I need that hope. I need to believe. Believe that one day it'll be better.
Yes, I am on an antidepressant. I was taking ativan for anxiety, but stopped when I started taking valium as a muscle relaxer. I stopped taking that too because I didn't find it very helpful. So right now I'm not taking anything for anxiety. I don't know that I really want to.
Again, thank you all for taking the time to read and respond. I don't know that I want to go out into the world of people without pain who judge and don't understand, but I will try to expand my own world out a little and maybe at some point the two will collide. But for now, I will keep chugging along for my two beautiful, caring, loving, adorable, energetic, silly, little girls. Gosh, I really don't wanna think what or who I'd be without them right now.
Yes, I am on an antidepressant. I was taking ativan for anxiety, but stopped when I started taking valium as a muscle relaxer. I stopped taking that too because I didn't find it very helpful. So right now I'm not taking anything for anxiety. I don't know that I really want to.
Again, thank you all for taking the time to read and respond. I don't know that I want to go out into the world of people without pain who judge and don't understand, but I will try to expand my own world out a little and maybe at some point the two will collide. But for now, I will keep chugging along for my two beautiful, caring, loving, adorable, energetic, silly, little girls. Gosh, I really don't wanna think what or who I'd be without them right now.
That is a great post, Tuck. We need to have some of these "Universal Truths of CP" posts in a file or something. Like on the health pages. The ones written by real CP members are worth so much.
I was wondering about this the other day and what stage I'm at, I remembered someone posted something like this but I couldn't remember how to find it.
I'd say I go through the last 3 or 4 over and over again, given enough time. When flare ups get bad and what-not.
Dontundertand- I hope that you know we are always here to talk to. Sometimes hearing about what someone else is going through helps us deal with what we're going through. Going through marriage trouble is hard. I hope that everything works out for you with it.
I was wondering about this the other day and what stage I'm at, I remembered someone posted something like this but I couldn't remember how to find it.
I'd say I go through the last 3 or 4 over and over again, given enough time. When flare ups get bad and what-not.
Dontundertand- I hope that you know we are always here to talk to. Sometimes hearing about what someone else is going through helps us deal with what we're going through. Going through marriage trouble is hard. I hope that everything works out for you with it.
Thank you ladies. You have no idea (although you probably do) how much that means to me. As soon as I started reading the reply I began tearing up. Last night the hubby wanted to go eat sushi. I hate sushi. As luck would have it, the sushi area of the restaurant was full, so they sat us in the hibachi part. I'd never tried hibachi anything so I ordered off that menu and we ordered the girls hibachi as well. It was really neat to see the chef do all the tricks and the girls enjoyed it enough I actually got a laugh or two out. It has been a long time since I've laughed and I am very thankful for the opportunity.
Again, thank you guys. I asked my mom to come play cards with me tonight. It has been our "thing" playing cards, since I was a little girl. I hope we can both say goodbye to the blues if just for tonight.
Again, thank you guys. I asked my mom to come play cards with me tonight. It has been our "thing" playing cards, since I was a little girl. I hope we can both say goodbye to the blues if just for tonight.
You silly girl! Just what do you think we're all here for?! Vent away, get it all off your chest and start looking for ways to "get plugged back into society" as you so neatly phrased it.
Don't expect to be able to jump right in to a social life. Take it in baby steps. Even a daily walk will help clear the cobwebs. What kinds of activities do you enjoy? I love making music and find that outlet in playing the piano and singing and ringing handbells at church. Even if you aren't a believer, give it shot if for nothing else than the social life. Nobody is going to assault you or "out" you if you visit different churches to get the feel for the congregation.
The broader goal is to get you out of the house and around people again. Maybe take a book to a park or visit the library. If you have a dog, go for a walk or to the dog park. I love browsing antiques and most shop owners realize it's the nature of the business to have more browsers than buyers so you won't get a hard sales pitch. They're also more than happy to talk about their stock items, so you could get an education at the same time you practice socializing again.
I do the same thing as you're doing right now. Depression sneaks up on me and I withdraw if I'm not vigilant. There have been countless times that I've felt exactly the way you do now and had to kick my rear end out of the house. Sometimes that meant starting by walking around my backyard and taking it from there. Baby steps! Once you do that, you'll begin to stop focusing on yourself so much and more on other people and life in general. So take that first step and walk outside and smell the roses. :-)
Don't expect to be able to jump right in to a social life. Take it in baby steps. Even a daily walk will help clear the cobwebs. What kinds of activities do you enjoy? I love making music and find that outlet in playing the piano and singing and ringing handbells at church. Even if you aren't a believer, give it shot if for nothing else than the social life. Nobody is going to assault you or "out" you if you visit different churches to get the feel for the congregation.
The broader goal is to get you out of the house and around people again. Maybe take a book to a park or visit the library. If you have a dog, go for a walk or to the dog park. I love browsing antiques and most shop owners realize it's the nature of the business to have more browsers than buyers so you won't get a hard sales pitch. They're also more than happy to talk about their stock items, so you could get an education at the same time you practice socializing again.
I do the same thing as you're doing right now. Depression sneaks up on me and I withdraw if I'm not vigilant. There have been countless times that I've felt exactly the way you do now and had to kick my rear end out of the house. Sometimes that meant starting by walking around my backyard and taking it from there. Baby steps! Once you do that, you'll begin to stop focusing on yourself so much and more on other people and life in general. So take that first step and walk outside and smell the roses. :-)
Oh sweetie: I'm so sorry you're gong through this. My DH can be a horse's rear about my pain as well. You are depressed. Most of us are treated for depression. And many of us are socially isolated from the pain.
The stress you're under is increasing your pain. Do you take anything for anxiety? If not, look into it. And depression? You need something for that as well.
But we are HAPPY to be your therapist. Talk to us. PM me or Sherry any time. We want to help. I have BIG ears and broad shoulders. I am always available. I keep strange hours!!
Don't be quiet. TALK and keep talking. We don't mind whining, comlaining or venting. We are here for you!!!
(((((((((((((((HUGS))))))))))))))))
Sara
The stress you're under is increasing your pain. Do you take anything for anxiety? If not, look into it. And depression? You need something for that as well.
But we are HAPPY to be your therapist. Talk to us. PM me or Sherry any time. We want to help. I have BIG ears and broad shoulders. I am always available. I keep strange hours!!
Don't be quiet. TALK and keep talking. We don't mind whining, comlaining or venting. We are here for you!!!
(((((((((((((((HUGS))))))))))))))))
Sara
My Dear,
You KNOW that we are ALL here for you!!
I'm so sorry that you have hit this REALLY rough patch. It's DOUBLY tough when your Support system seems to have vanished when you need to be able to reach out the MOST!!
You are such a giving person, as we can tell from your posts on here, and it's so sad that when you need it the most the people that you are giving the most to can't or won't listen!!
WE WILL LISTEN and we WILL answer back!!! You know that you can PM me WHENEVER you need to!! I WILL answer!
PLEASE take care of yourself and TRY to stay IN TOUCH with ALL of your Friends here at MH!!
We ALL love you and we're HERE for YOU......Sherry
You KNOW that we are ALL here for you!!
I'm so sorry that you have hit this REALLY rough patch. It's DOUBLY tough when your Support system seems to have vanished when you need to be able to reach out the MOST!!
You are such a giving person, as we can tell from your posts on here, and it's so sad that when you need it the most the people that you are giving the most to can't or won't listen!!
WE WILL LISTEN and we WILL answer back!!! You know that you can PM me WHENEVER you need to!! I WILL answer!
PLEASE take care of yourself and TRY to stay IN TOUCH with ALL of your Friends here at MH!!
We ALL love you and we're HERE for YOU......Sherry
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Like you I refuse to be the complainer. I have never had much patience for ppl that continually whine and feel sorry for themselves...so I refuse that role. I allow myself to have a private pity party now and again. No one is invited. When it's over I pick myself back up and keep going. That's all we can do.
I do think that acceptance helps. As I am sure you know, ppl with chronic pain often travel through the stages of grief. Why? Because we grieve for our former active and pain free self, the previous life we lead. This chronic pain (CP) journey is all so different and forgien from anything we have experienced in the past.
The five stages of grief, was first identifies and introduced by Elisabeth Kübler-Ross in her 1969 book about Death and Dying. Since than her theory has been expanded to include anyone that suffers a loss of any kind, especially in pain management patients.
The initial five stage identified are as follows:
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes)
Just knowing that what you are feeling is normal can help you deal with your emotions and feelings. I encourage you to do some reading on the subject. It has helped me.
I have been a chronic pain patient for years. Recently a new and more extreme chronic pain condition was added to my list. This sent me from the "Acceptance" stage backwards. It's okay. It's normal. I will work my way back to Acceptance.
Normally I don't discuss my issues on the board. However I am sharing this with you in hope that it will help you understand the process. You are not alone. We are here to offer our support. Feel free to vent when you need to vent. You're entitled to your pity parties....just don't stay at the party too long.
The best word I know to describe chronic pain and it's challenges is tired! Tired! Dealing with the pain and problems that it brings into our lives is very tiring. We have so little energy to expend when we have CP. I try to use that energy in fruitful purposes. I'm selfish and prefer to extend my energy in happy thoughts, deeds and words.
My heart goes out to you. You will make it. Be good to yourself and be forgiving.
Peace,
~Tuck