Neuropathy Community Group

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how can i make him understand???

meganK08
meganK08
My hubby really doesnt seem to get it. I went our seperate ways this week. he went on a trip to las vegas and I went to visit my family in Kansas and by the end of the 6 hour plane ride there i was having some serious pain. my dad said i looked so bad he thought i was going to pass out. I told my husband this and he was just take your medicine go to bed. ok i can do that. the trip wasnt too bad cold but not too bad. Well i was really worried about flying home it was a longer way home than there. I told my hubby that i would wait at the airport the extra two hours if i was feeling bad. He got really mad at me said i had been planning this the whole time that i just didnt want to drive home. Ummm i cannot drive on pain meds. he went into "i got used to my vicodin and i could drive just fine". I told him i wasnt him he is alot bigger than me i weigh only 80 pounds for crying out loud. He told me he was tired of this. He is tired of it?!? Im tired of it!! Ive always had a low immune system and i have terrible allergies so it seems like i am sick all the time. But the neuropathy the constant pain it has only been 8 months only 2 with a diagnosis. And he says he is tired of it. grrrrr i want to scream i need someone here for me. I need hugs when i do not feel well. He says im too clingy and that i dont do anything. he is tired of hearing about it its all i talk about i guess. but hey what else do i do all day. somedays my greatest acheivement is walking the mall. just making it around there once. I get proud of myself for cleaning a room. I cannot make him see this. the nerve block was supposed to help for the most part it made my pain go away some like from 7-8 level to a 3-4. it is definatly there when i have my period. if you guys do not know i have pelvic neuropathy. stabbing pains from my back, hips, pelvic area and the back of my thighs. lately since the block down to my toes like my whole foot will turn inward and i will fall when i get the sharp pain. My husband just doesnt get it. and actually his sister is getting a divorce right now because she didnt want to take care of her husband after he had a kidney stone. he was really ill for months and got suicidal and she just couldnt handle it. im seeing the same thing going on with my husband and it scares me. Ive tried getting him to come to the dr with me. he wont. im scared i try cleaning the house and i do what i can. i know i have a lot of anxiety when my pain is bad and i just want to lay on the couch and hug my hubby because it makes me feel safe but i need a new outlet for that. he doesnt like it. he told me i need a hypnotist, accupuncture something he just doesnt want to do this anymore he says i need a life. and i do does he not think that i do not want one? just makes me sad. he told me i have had this crutch of being sick and me thinking that he doesnt love me for a couple of years now. that isnt true. i just get upset when he turns me away or tells me to stop crying because i hurt or yells at me because i have pain. he tells me i exaggerate about my pain. I dont know how to get him to understand in the slightest i do not want a divorce and im really scared. im going to school, im trying to work, im trying to get my life back. But i need him to understand it is a day by day process. i want to scream i joined the gym im trying to get out and about just hard. i have no support anymore from family or friends like hubby said tired of hearing about it. just letting it out tonight. do your guys familys understand or try to help you? do you hide it from them? i cant do this alone i feel so alone with this.

Hugs

Meagan
deleted_user
deleted_user
Megan,
My heart goes out to you. Even a little support could go a long way for you. Not that I would wish neurological agony on anybody who is currently well; however, perhaps he too needs to get a life. Life is too short and too fragile, which makes his attitude totally wrong. He may be calloused in order to defend himself from painful feelings he would prefer to pretend do not exist. Perhaps he could be encouraged to do volunteer work in a hospice, a rehabilitation hospital, or some other facility dedicated to the care and healing of folks with illnesses. Although I hope that divorce will never happen, if it does, you will need a network of support, and we can be part of that network.
meganK08
meganK08
you all want to know what is funny he is paramedic, his sister is a nurse.

(((Paxton))) thank you so much for your reply i agree with you life is too short i hope he snaps out of it soon. Hugs to you i hope you are well today
deleted_user
deleted_user
I myself have been in the same boat.My wife, sister who is a ICU nurse, and my brother who calls me a hypocondriac did not beleive me either.(I have primary carnitine deficiency and hypothyroidism)Some people just do not understand and I have found some people turn there grief about your illness into anger because they do not know how to help you or are very upset that you are sick. The fact that your husband and his sister are in the medical field it makes it harder for them to beleive you. If a doctor diagnosed you that is all the proof you need. He really needs to go with you to the docs office whether he wants to or not. My sister and wife beleive me now and it took along time. My brother has is own illnesses and is denile himself.You will always feel a little alone in some way except when talking with people in the same situation.Well good luck.
CHRIS
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I really do feel for you. What you are going through isn't easy without support from your husband. I do believe that there are men that just cannot deal with their wife suffering from severe pain, and feel helples, not knowing what to do. This has happened to me too. I try not to complain all the time even if I hurt 24/7 sometimes.

I remember about 4 or so years ago, I was in my first accident where my car actually did a 360 degree turn, and was in total shock and dispair. Who came to see me first? It was my son, not my husband. My son is never affectionate but on that day, I remember him hugging me like he'd never done before, and was there for me in every way, making sure I would be okay. A short while later my husband came, and he looked totally stunned, staring at me, not knowing what to do at all. Thank goodness my son came when he did and reassured me about everything. Just his hug made me feel that everything would be okay.

I took it upon myself to find a therapist to vent all my problems, and just knowing she was there for me was enough to get me through the hardest days. It helped me tremendously and I believe that you, too, would benefit greatly with therapy. In my case, it was worth every penney. It made me feel better about myself, my future, and my relationships. Take care and do remember that DS is always there for you.
deleted_user
deleted_user
Meagan, I'm so sorry your husband has this attitude. Unfortunately, it sounds like he has copped an attitude on purpose. The fact that he won't even try to understand you and won't go to the doctor with you ... makes you wait at the airport for him for two hours ... well, he just wants you to be like you used to be no ifs, ands or buts about it. Unfortunately, that is not the case. He needs an attitude adjustment and quickly. Will he consider couple's counseling with you? If not, maybe you can get counseling just for yourself. Yes, you can vent all you like here. I'm not trying to tell you not to. However, we can only speak of our own experiences, and are not counselor.

When I got Lupus, I was sleeping for 16 hours out of the day. There was no way I could do anything else. My younger son was so helpful. He'd set the alarm clock for 5p.m., then wake me up and ask if I would be able to make supper or if he should start something? My goodness, how did our children get compassion and not our husbands? Anyway, my hubby never went to the doctor with me either. I printed out stuff from the computer on Lupus. He accused me of not having Lupus, but just being lazy. That was the beginning of the end of a 20 year marriage. He wanted his 'other' wife back. The one who was on the go all the time, cleaned the house, cooked his meals, planned corporate events, etc., etc. Well, it wasn't going to happen.

Do you think if you printed off some material from the computer and left it out for him to see, he might read it and understand more? You need support right now, not bullying.

I'm so sorry you are going through this. I'm keeping you on my mind and in my heart. peace and love ... Kyle Anne
deleted_user
deleted_user
Oh, I forgot to mention that we have many good resources on this site where you can print off information on your condition.

Gentle hugs.

peace and love ... Kyle Anne
meganK08
meganK08
(((Thank you guys so much))) I do go to counseling and it has helped so a lot i think my husband should go with me i just have not asked him yet. part of my homework someday i guess. I understand the being tired with all my meds and the pain and trying to keep up with my old life i shall call it i take naps. i spoke with my counselor yesterday and i think for a while i will try to stop being so clingy to my husband i was not this way before i got sick but when i hurt now its like a desperate need to be near him. Im also just going to try to keep it to myself i keep a journal i shall write it all in there. if he doesnt want to come to my appts then hey ive done this almost by myself for a year now i think i can do it longer. right now working off my pain meds someone told me it takes 6 months for your body to really detox from the stuff i know the nerve block wont last that long. but im going to research all i can about the pelvic neuropathy still new to me. i appreciate all of your guys help like you said kyle anne you guys are not counselors but you know what this is like and you all have an understanding. im so happy that i found this group with all the information and wonderful people here. I am so sorry that a lot of our family members are not as underdtanding and trust me i wish this pain on no one. I have days where i just want to rip it out lol. i just like to get advice from others who i know do not have the same neuropathy as me but can understand my counselor doesnt even undertand some days i think. and somedays i just have questions about the meds. i do also have depression what i go to counseling for. i started feeling that way after my hospital stay back in january and the pain never went away and after 2 surgeries, colonoscopy, 6 er visits, i can go on and on but the drs thought it was all in my head. i cried when the neurologist looked at my mri and said nerve damage no chance for kids. then the way my family treats me like im an addict. again i know this isnt counseling i just want some people out there to know i dont get on here all the time to get on yalls nerves lol. i just desperatly want info on how you guys get through your days. im doing better gym on the good days and school and trying to work. but anywho going to bed now before i make this a book BIG HUGS to everyone you guys are all so wonderful

Meagan
deleted_user
deleted_user
Good luck to you, Meagan. Keep us updated, okay?

peace and love ... Kyle Anne
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Magan,,,first of all HUGS to you today my new friend. I am so glad I took time out of my boring day to read about your feelings because I share most all of them and went through the divorce and was left for another woman who had a house from HUD all ready for him and a place for my daughter (some duplex) through her family, and then bam,,,I was thrown away like an old rag doll...I have never gotten over it and have been mistreated and misunderstood by my entire family...they are clueless until something happens to them. I had no idea there was pain that existed like this until it happened to me...Just from what I'm reading your husband is not giving you the kind of love and support that you need and deserve, so you you're going to have to find it in other places like here and local support groups in your area...I can already tell that you are doing way too much by way of activities as far as pain goes and it will only get worse I'm afraid unless you get really good sleep, and eat a really good diet and take meds as needed. Your husband really doesn't have a clue, honestly...mine sure didn't handle things right as far as the break up was concerned so I'm better to not be with someone who couldn't love me for who I am anyway...it hurt like hell for a while, but in the end YOU are all you've got and YOU will have to plow your way through this and many will be here to help you along the way...God is so good this way! Hang in there and please write me anytime ok? lil
deleted_user
deleted_user
SOUNDS LIKE THE MEN , HUSBANDS/OTHER , NEED TO PAY A VISIT WITH YOU TO YOUR DOCTOR FOR SOME FIRST HAND INFORMATION AND OR ANNOUNCEMENTS. MUCH MATERIAL IS WRITTEN ABOUT THIS HORRIBLE DISABLING CONDITION, AND ALL FAMILY MEMBERS MUST UNDERSTAND IT ALL. DON'T EVER LOSE HOPE AND KEEP HAVING FAITH. ALWAYS THINK POSITIVE. THERE IS ALWAYS A BEAUTIFUL RAINBOW JUST BEYOND THE CLOUDS. CONTINUE WITH YOUR PRAYERS AND FAITH IN GOD. HE WILL HELP ONE THROUGH ALL THE DARK VALLEYS. GOD BLESS EACH ONE WHO HAS THIS ADDITIONAL PROBLEM OF MINUNDERSTANDING OR NO UNDERSTANDING OF SOME.
REMEMBER ALWAYS, THERE IS INDEED A SILVER LINING TO ALL THINGS. THIS IS OUR BURDEN, AND WE SHALL SHOULDER OUR CROSS WITH GREAT STRENGTH. WE ARE ALL STRONG AND WILL TOLORATE WHAT IS GIVEN TO US. BLESSINGS TO ALL....WARMLY, JEAN
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Meagan, unfortunly some men are not compassionate and it looks like it is a learned behavior, if his sister is like that, maybe it was something from their childhood, if he really is getting upset about you telling him about your pain, maybe not talking about it to him would be a good idea, i know that your husband should be there for you but he isnt, i know it is horrible but it seems he is on the edge, he is starting to get verbally abusive to you.

i hope that everything works out, i try not to talk about my pain to much, because it does wear on a family and that is all i could think to do
kathyrsh
kathyrsh
does someone have to have an open bleeding wound or a bone protruding out of the top of they're head for people to believe they're sick and in pain(sorry to be so graphic) but it just makes me so angy when i hear a story like yours megan i realy feel bad for you...i think people close to us get mad when we can't perform to they're liking ..very selfish..i have hepc which i think caused the neuropathy in my feet and my friends expect me to walk to they're house and help them with meanial things and babysit..i won't do it..not anymore..you sound like you've done alot for your husband and now your sick and can't..people get spoiled easily..everyones right you do need and deserve alot of support right now just know that there are people out here that care about you ...you'll be in my prayers
deleted_user
deleted_user
I understand a little of what you are experiencing with your husband. I finally got so disgusted with the way my husband was reacting to my pain, I told him next time he is in pain I will tell him the same thing he told me and I will ignore his pain like he ignores mine. He tells me that I just need to eat right and exercise. He has been with me to the doctor's office and has heard everything. I have printed articles relating to neuropathy for him to read. He still doesn't get it. Unfortunely for you there is only two things for you to do, put up with his uncaring ways or leave him. This condition has made me more considerate of people who are in pain. I wish I could give you a hug to make you feel better. Remember there are people who understand what you are going through and you are not alone.
You sound like you are doing the right thing by pacing yourself and not overtiring your body. I do a little,the rest a little. I only do what I can when I can. It's amazing how housework becomes less important when you're in pain. I was compulsive/obsessive about cleaning when I was younger but I am learning to live with the dust and disorder as I get older and find that the people in your life are the most important things. I tell people that if they want to see me they can come any time but if they want to come to see how clean my house is then they need to make an appointment.
So far, God has not given me more than I can handle. You must reach inside of yourself and decide what is the best for you to do and then SLOWLY do it. Do not give up!
deleted_user
deleted_user
Hi, I am sorry that your husband does not understand. Mine does not understand either.This Dec. we will have been married 24years. Life is constantly changinging. We hange as well. Our bodies change. Sometimes for the worse, not the better. I understand how a spouse wants to have the same spouse they married, and to be able to go, go, go. I have svsere spastic Cerebral Palsy, which has become more spastic as I have gotten older and aged. I am 49. Yet I noticied changes in my thirties and by my early forties, did not understand, why most everyone at my job, even older than I was could walk faster than I could and had more endurance. I thought it was just what getting old was all about. I never had been told I had CP when I was a child. You can't make your husband understand what you feel physically, mentally or emotionally. No one can cause their spouse to show compassion, to not be demanding or selfish. My husband became angry because he saw changes in my physical ability, yet without realizing it, he began taing his anger out towards me. I t is not your fault, my fault. Life is not fair. We all face challenges. Some more difficult than others.My husband became so angry about life, things, he told usall to leave. That was three months ago. What he did not realize is the things I always did, took care of, even after things became harder, more difficult, he is now realizing what is really is like to walk in my shoes in a sense. No, not in the physical sense, but now he has to take care of washing his clothes, buying groceries, cooking cleaningup after himself, keeping up with the bills making sure they are paid. When he does not pick up after himself, what ever he got out and left, stays right where he left it. My point is that people do not realize what others really deal with on a daily basis unless they walk in their shoes. When he would get a charlie horse in his leg, only while the pain was there did he want, need relef. I would use this as an example for him, hoping he would understand. When he would have sciatica- nerve pain, I would try to help him understand. It just never stuck with him. All that I can offer you is to say I understand and pray, that's all I know to say. Pray that God will change his heart, cause him to become more compassionate. Wedding wows are so easy to say, yet encompass so much. For richer or poorer, in sickness and in health-that'so much. I have told my husband that I feels that he loves me conditionally, based on what I do or do not do. My prayer is that he love me unconditionally. None of us know from one day to the next what we will encounter in life. Marriage is about comittment, love, wedding wows, serving the other one, puting their needs above our own at times, sharing, giving of ourself and time. Life is also about change. We all change in life, Our physical bodies change as well as our endurance levels. It is part of life. Sickness, disease they are part of life too. I pray that your husband will respond to you with true compassion and love. None of us need to take the other for granted. We have all been gived gifts. We must cherish those gifts, our family and friends each day. May God Bless You With His Peace And Presence and Bring Healing To You.
Hugs,
Pat and Cookie:)-She is my little dog. I love her so much.