Husband support ?????

[roktta06]

Hi everyone (married or with partner) this is kind of difficult for me to post because it is a very sensitive subject for me buuuut, I was wondering if anybody with Chiari has a partner or husband or boyfriend or whatever that does not understand your condition and makes your life more stressful and difficult for you. I DO!!!!!!!!! I do not know if this is the right place to discuss this but I really need to know if I have an insensitive husband or there are a few out there!!!! This upsets me so much that my stress level rises and things (symptoms) get worse!!!! I know my husband loves me a lot but WHY WHY does he not understand. I have send him articles about Chiari malformation…depression and he just does not give a damm….. he has gone with me ONE time to the doctor but I have mainly just be along with my CM. I have been married for 20 yrs now and he married me knowing I had this…
Imagine my depression i have to attend seminars to jump up my self esteem because I can not believe that the person the loves you the most does not care!!!!!!

:(

[lydelia]

Thanks for the words of encouragement.

[linnielou232]

I have to say after reading your post that I am so so blessed because my husband is the total opposite.  He has went to every dr. appt.  just everything.  He won't let me go without him because he want's to be informed.  I'm happy to hear that your husband is going to your next appt so he can hear what he need's to hear.  This is a major surgery and your husband's both need to know this.  I say when my husband found out that I had Chairi he actually did more research than I did.  Maybe suggest to your husband's to go on line and they can actually see what you went through.  They do show the procedure online.  I have never seen it, but my husband has.  He won't even let me lift anything over 10 pound's still and I'm 16 post op.  He know's what happen's when I do.  Letting your husband's see you in pain is good for them to see.  Just being out of surgery it is very very important that you take this time for YOU.  I had to learn this the hard way because I was alway's the one taking care of thing's my husband really didn't have to do anything because I LOVED doing every thing around the house, yard, etc.  Now I'm lucky after going through 4 surgeries all together I have learned it is OK to take time out for your self.  If you don't you will be back in the hospital doing the procedure all over again.  I just feel your ladies pain and miss understanding of your husband's.  I know there are some @@@holes out there that just don't get it.  I am going to go out right now and give my hubby a big hug and tell him how grateful I am for having him.  For those who don't have loving support I do suggest to have them get more educated in having Chairi because it is a family changing issue.  It is hard some day's ecspecially when you don't have the help you need.  I have also found out through my stuggle with surgery.  It's o.k. to ask for help.  If your husband won't help.  Other's will.  I'm here just to listen to hopefully give comfort letting you know your not alone in this.  We are a Chairian family.  Once a Chairian alway's a Chairian.

[lydelia]

I know how you feel. Mine doesn't get it either. We've been married for 7 years and together for 11, and he's sort of always been this way. Before I had surgery he minimalized it saying that it was not major surgery and if I got tired and needed a nap or a break from the kids or didn't want to go somewhere, he'd get mad. He even said 'At least after your surgery you won't be able to use this as an excuse to get out of everything or nap all the time.' Now that I am post-op, five weeks, he still doesn't give me any breaks. I had to stay with my grandma for two weeks after I first came home to make sure I would have some time to heal because I knew he would not give me any. He helps now only if I nag and nag, but he still doesn't get it. Doing laundry, cooking, walking (like outside for exercise), shopping for groceries, any of those, even alone exhausts me, and I tell him all the time, I need to rest, I need a break and he's like whatever, you can't be that tired all the time. That wasn't major surgery. WHAT!!!! I had my spine opened, part of a vertebrae removed, my brain exposed and dura patched and he thinks that wasn't major surgery. He thinks I should be up to doing everything home related by now, and he just doesn't get how tired it makes me or how much it makes my head hurt.

He didn't come to my appointments either. He is coming to my post-op and that will be the first one. He did stay in the hospital with me one night, but I don't think he even wanted to do that.

So, needless to say I feel you. I am so sorry that you are having to go through this. It *****. Just know that you are not alone. I am right there with you. Keep your head up, stick to your guns, and do what you can do, and not what you can't.

I think the problem with mine is that he is used to me always being he strong one and the one that takes care of everything and now I need him to help me and he is rebelling against that, but that is another story.

[roktta06]

Thank you "linnielou" I am just so sad right now....!

[linnielou232]

I know it isn't a easy adjustment to be a by stander watching every one else have fun and you can't join in.  I am 1 yr post op and still dealing with this.  It's a hard thing to except and getting used to.  I to used to be very active and having Chairi is a life changing issue that some husband's just can't except.  I am sure he is still looking for the woman that he married.  He has to realize that person is no longer there.  I know for my self I miss my self.  If that makes any sense to you.  It's just hard dealing with the change.  I am sure that is what your husband is dealing with right now.  Just try finding other activities that you both can enjoy together.  It's just a change in our life's that is hard to except, but there are other activities that you can both enjoy.  It's just finding the one's together.  He sound's like he loves you very much, but like I said it is hard to except change especially when we were such active people.  Just you being honest with him and yourself will help.  Communication is important.  My husband used to do the silent treatment to me also year's ago but because of this surgery it has acturally brought us closer together.  Like my husband told me.  We had the surgery, but they are the one's who has to set back and watch it happen to us and it's hard watching someone you love suffer.  Having Chairi isn't just about us it is a family illness and some just don't want to except it.  Take one day at a time and thing's will get better.  We all understand completely what you are going through.  Your not alone even though some time's that is how we feel.  Keep your chin up.  Your husband will come around.

[roktta06]

I appreciate your advice and will certainly take them to heart!!! For 20 yrs I have tried to talk him into researching my condition..to no avail...he is just negated to find out anything. He knew I had this operation before we got married and I explained everything to him. But of course butterflies were flying
around his head then..lol...lol..... Even my mother in law told him to think about marrying me because what I had could be hereditary ... and he still went ahead and dived into the marriage. I guess since he has always seen me so strong he really does not  know what is going on inside. I go everywhere with my family ...fishing, snorkeling, hang gliding, (no horse riding) ... whatever they want to do I go!!!! Sometimes I do join them sometimes I just stand and watch them have fun and cheer on!  it's just the silent treatment I hate!!!!
Thanks for listening !!! I least I can express myself without anybody judging! God Bless you all!