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Lack of Support.
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I have been dealing with chronic pain for over 7 years now. it all srated lifting a patient at work~RN.

My family and friends have had it with me. They just do not want to deal with it any mre. Like i do? Like I am enjoying this life?

I had an epidural~deep with anesthesia on monday and all week my H has been bugging me about not getting out of the house, cooking, grocery shopping , etc. I asked him ro pick up a few groceries~they eat. I hardly eat any more due to the pain but, they still want a hot meal every night. He had a tantrum and hing up the phone on me~in fact he is right now on an after work bike ride to de-stress.

I feel so absolutely alone in this house with no real physcial or emotinal support.

How do you all cope with this, if yours is this bad?
Posted on 09/13/07, 06:21 pm
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Reply #1 - 09/13/07  7:06pm
" I cry alot.I know how you feel, none of us wants to be this way, in pain and needing someone elses's help.I spend time here and talking with other pain groups to cope.I would love and need more understaning from the people closest to me, but having people here that know what it is truly like and don't mind your need to talk about the pain.We know it is a hard road at times, I think it is just hard for some to belive that this is this bad and can rule your life the way it dose.They cann't comprehend what it is like to have that much pain all the time, because they havn't ever went though it.
Hugs and prayers "
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Reply #2 - 09/13/07  7:31pm
" Unfortunately your story is told dozens of times a day here on DS! Other than the pain, I think it is the one thing we most have in common...friends and loved ones not understanding our PAIN. I am so sorry your husband is giving you such a hard time as the stress can make your pain so much worse as well as the mental strain in coping with people who don't understand. I am not married, but I would think that lack of support from one's spouse would be so awful as they are closest to you. Maybe you could have him look at this cite and read some of the post & stories from others in CP? I wish you so much luck and hope & pray your husband will realize what this is doing to you.

There is a really great lady on here with the user name of OMIE, she does'nt have CP but her husband does and she started a cite from the other perspective. You might want to check that out as well and see if you can get your husband to look at her website. Just go to her profile for more info.

My thoughts and prayers are with you and I hope you'll keep us updated. You are not ALONE is this and there are so many people here ready to help you in any way they can! "
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Reply #3 - 09/13/07  7:54pm
" I`am sorry about your situation. Life is just so unfair.
I too am alone but physically alone and as far as emotional support on the outside from family or friends, nil...
Thats in part why I joined this support group. I think I would feel pretty badly
if I had a husband who treated me that way though. You do have my sympathies. Some people are givers and some are takers in this world it seems.

Rosanne "
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Reply #4 - 09/13/07  10:16pm
" I'm really sorry you don't have the support you need. I KNOW it's hard for loved ones to understand, but don't they realize that NO ONE in their right mind would want to live this way? It's called walking a mile in someone else's shoes..they ought to try it sometime.

I agree with the other him this site. Print off the posts if you have to, and leave them lying around where he can read the bathroom.

Maybe if he hears it enough, it might sink in. Maybe he could go with you to your doctor's visits, and your doctor could talk to him?

I hope you reach some understanding in your relationship. Hard to imagine going the rest of your life like this...*hug* Becky "
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Reply #5 - 09/14/07  3:00am
" thanks so much for all your supportive coments. i feel so dark and alone. my life used to be so joyful despite other issues, i always held it together. but after 7 years i'm tired of it all.
i go to counceling off and on, he won't go~he is afraid, a coward.
some days are worse than others, but every day is a planned out project~just to get through the hours.
than you for your support and suggestions. I've tried geting him yo trad about things; he won't ...says he is too busy with work.
thank god for thus place. at least people "get it" "
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Reply #6 - 09/14/07  8:20am
" Im so sorry for the pain you are in. I think alot of people on here have the same problem. Ive given up trying to get my family to understand. Its impossible, and exhausting. They would rather think of me as a hypochondriac than believe i am in alot of daily pain.

I asked my mum the other night for the phone # of my doctors because id left my cell phone at home ...she looked at me & sighed & said ''He will be sick of seeing your face, chopping & changing pain meds every 5 mins'' ...I was like, are you (fucking!) joking?! It took me SIX MONTHS to get him to change them once!! and ive been on them 2 weeks and none of the side effects have dissipated.

So ive decided to give up on ever thinking that they will understand, or at least support me. Im so glad i found this site, everyone gives you support, love & understands even if you dont explain.

They just get it, because they themselves have been/are going through the same thing.

I hope for you it works out differently, it would be lovely for your husband & children to give you support & understanding in every day life. Good luck, but we are here for you too.

Big hugs xoxoxx "
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Reply #7 - 09/14/07  8:41am
" I don't really know what to tell you. I do want you to know that I'm here for you. If you need to talk, if I'm online, just chat with me. I'll be happy to talk. If you need to just vent, message me all you want. It sounds just awful what you're going through. Hugs. Boodles "
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Reply #8 - 09/14/07  9:58am
" I can relate, my hubby acts like nothing is wrong(denial), and expects me to do everything, clean house, work, cook. He does not get it and wont go to pain dr with me. I pray a lot and listen to christian tapes, it helps me cope. People do not understand if they havent been there. Hang in there! "
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Reply #9 - 09/14/07  11:15am
" I don't family is equipped to deal with long term illness, especially if they can't see it. Honestly, don't think I'd be very compassionate or understanding if the shoe was on the other foot. And, that's just the truth.

No one can understand unless they themselves have been through it, the power to empathy. Others may want too, or even try, but even the most tempered saint tires of constant illness. Healthy people are busy people, and having to pick up our slack just makes things worse.

I thought about asking them to read, or printing off discussions, but it's a waste of ink. Suggesting that they go online and read "what my friends" say, is asking for some smart ass remark. Like, what do they know, or, it's the Internet.

There is still so much bad publicity about the net. If you long on to the Internet, you must be a pervert or insane. (lol) Closed minded thinking that keeps them from reading about my illness too.

I know for me, that once I got on here, everything I read made sense, the symptoms, the length of time, the hostility of others, the pretending nothing is wrong in hopes that it will go away.

Just for today, I really don't care if they want to understand. I'm helping me, and that's the only person I can help or attempt to change. This is my safe place, and any residual effect is all gravy for them. God bless you. "
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Reply #10 - 09/14/07  12:12pm
" I'm sorry for the lack of support you have at home especially from your husband. You have our support here. We "get it". We know what it is like to live in pain 24/7.

I don't have an answer on how to get support at home. Please talk to us here anytime. We will listen. "

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