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!!!!!!

:(

[selmaS]

  Hi...we have had many members with the same situation as u, I am lucky in that my DH went to Dr appointments with me, and researched this condition on the web...so he knew what it all was, and I went our whole marriage with something that just was not right and Drs never got it right.

But, what u do need to keep in mind, ur family is not medically trained and they do not understand this, that is understandable, what gets me fried is there r NS's and other Drs in the field that do not understand it...so if they don't get it how can we expect our family to?

I know what we really want is their support, even if they do not understand all that is going on...but the flip side to that is they r afraid, just as scared as we r, sometimes our male partners take it worse as they feel the need to protect us, and fix us and they can't.

I have a picture of my DH lying on the floor just after I got home from my surgery, I called him my warden bcuz he would not leave my side,...he was sleeping on the floor by my walker....

Give ur DH the benefit of doubt, if u know he loves u, know he cares, he is just scared .

    "selma"

[roktta06]

Thanks for your lovely words.... I know my husband prefers not to think about it than face the fact the he might lose me... I have lived a very very active life... and almost NEVER complained  about pain even though I was about to pass out, because I did not want to be a burden  my family mostly  him. We live a very social life and he just gets so angry at me when I do not want to go to a dinner party because I have pain!!! Sometimes he gives me the silent treatment and does not speak to me for days because he thinks I did it on purpose. I feel I am just living my life for his pleasure  and if his life is not "Cinderella Perfect" he bails out. I have talked to him soo many times about my feelings and he just does not get it! I"ve even asked him if he wanted to bail out he could I would understand and he does not want that either!!! We travel ALOT!!!!!!!!! and when I ask him if we can slow down a bit and let me catch my breath ...there he goes again...anger!!!! JESUS! I am writing this and tearing up! Lately I have been having problem with my ears and his response is...NOW WHAT??? :(

[selmaS]

  Try  talking to him about his feelings, and let him know u do not expect him to fix u...and that in moderation u can still do and go most places and  if u work together u will enjoy some of the things u both consider important.

I used to get that b4 I was dx'd as well as what do u want me to do about it....

just try to understand he is scared and frustrated too...and not really angry at u, even tho it seems that way.....

  Let ur DH know u understand how u feel affects him too...he may come around.

   "selma"

[linnielou232]

My heart goes out to you, and I have been fortunate to have a very loving and understanding husband, but some husband's handle sisuation's so differently.  Maybe this is the way your husband has to deal with your sisuation at the time, but give him time and I'm sure he will come around.  Right now you need the love and support of your family.  Him not understanding your sisuation is I'm sure very difficult for you both.  Hopefully he will do some research on his own so he can understand what you are going through.  Some men think if they ignore the sisuation it will go away.  Ask him to read up on this and maybe this will help him come around.  If he love's you like he say's maybe he just need's to have a little time to obsorb what is  going on.  I wish you the best.

[Sexybare]

I feel what you mean. My boyfriend is very sweet loving and caring but 10 days after my surgery he shattered his collarbone and had a plate put in and ever since its been all about him. I cook clean do laundry and run arrands since he got hurt. I never had recovery time. My family thinks im fixed and fine. Im angry because until they walk in my shoes they have no idea whats its like to be me. Nobody listens anymore when i try to explain how i feel. Im extrmly frusterated and ready to start cutting off people in my life who dont get it.

[cash242]

I also feel for you and would be very hurt if my husband wasn't understanding so your feelings are validated.  I have been suffering for 5 years which I know is less than many but this last year was the crux with decompression surgery and another on the way and what I didn't realize was that our whole family had to change.  We too are extremely active we dirt bike, rock climb, snow and water ski there is never a dull moment but that doesnt work for chiari.  I obviously stopped doing these activities but would be so sad to miss out. I think it takes awhile to understand that this is a life altering condition that is not changing.  That means that what you do as a couple and family changes and that is really hard.  Family dynamics change. He may understand but it also means that he has to change and that is a hard thing.  Maybe if you slowly change and take things out that it will be easier but I also had to learn to say I can't do it and if you need to go without me its ok. Hang in there it sounds like he cares but maybe hasn't truly accepted the changes that both of you need to make but most important dont sacrifice yourself you have to take care of you!!

[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!  

[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]

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

[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.

[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]

Thanks for the words of encouragement.

[jive237]

I  know how you feel. i just lost  my wife to be and unborn child because she could deal with my condition any more

[selmaS]

  Welcome to the Chiari forum.

I am so sorry that ur partner was unable to deal with ur condition....not knowing how far along she was with ur child and what ur limitations are are to a disadvantage for me to offer some form of consolation.....

Hormones can play a role in this with ur partner...being pregnant is stressful and the unknown as to what ur issues are or will continue to be just may be too much during the pregnancy.....

  I hope u share a bit more about ur chiari journey so we can offer u some support and guidance.

   "selma"

[Katie6948]

I am going through the same thing! I was always very active when I was younger, and even spent time in the USMC, where I met my husband. I have always known somehing was wrong because when I did stuff it "hurt". No one really took me at my word (11 years now) until last year. I was diagnosed with lupus (blood tests, not just symptoms), and my husband went to one appointment. He hasbeen getting frustrated that I haven't been myself or as active/ super mom/ super wife that I ave been for 7 years. About three weeks ago I went to my Rheumy and he started me on an antibiotic to hopefully kill any underlying bugs that are hindering my lupus. I thought that the meds were the cause of my increased headaches (long-time complaint), or the fact that I had a cold. I went to see my PCP on Friday, as our normal 6 month checkup, and she was very upset that I hadn't come in sooner to see her. SHe told me that all the symptoms were not normal (major headaches, memory/ simple cognitive problems, gait issues, pain all the way fom the top of my neck/ base of skull to my lower back were constantly in pain. She sent me for a Stat MRI and denied my ability to dive because of vision interference as well. The wet read came back from the Radiologist Friday evening, and there was the malformation. It wasn't present last year on my MRI, but there it is. It has to be pretty obvious if the DR saw it on the wet read. I have another appt with my PCP on Tuesday, but sypmtoms are increasing. My husband either just dosn't understand or doesn't want to see what is going on/ doesn't care.I have two little girls (5 and 3) that do not understand why mommy is "sick" but I don't want to say anything until we know for sure. I really feel as if I'm spewing from the mouth, but I really have no one who is listening  who isn't occupied with their own kids/ lives. I'm freaking out at the possibility of surgery, and even more about the care I wil get here at home if indeed I do need it.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DH does not understand what is going on with u, but as I said there are many Drs,. and NS's they do not feel chiari will cause symptoms and do not recognize that chiari needs treatment...so if Drs are so mis informed, we can not blame those around us that do not understand this either....

I know, we want our loved ones to support and comfort and hear what we r saying...but, they get scared too....slow down and take him with u to ur Dr appointments and be sure the Dr is a true Chiari specialist.

  Be sure u r tested to check for a CSF obstruction, a syrinx,tethered cord, disk issues, sleep apnea, ICP, and Ehlers-Danlos Syndrome......


   DO check our Health pages for more info on chiari and related conditions, and our list of drs for u to use to research drs, the list is not meant as a referral.....

    "selma"

[Katie6948]

I was diagnosed with disruptive sleep apnea earlier this year. They wanted me to get a CPAP, but since I cannot work anymore, we couldn't afford it.

I know he wants me to feel better, but sometimes I do just want to cry. At least I know there are many others out there going through the same thing.

[selmaS]

  Do look into finding a way to get some oxygen support for sleeping, it will help ur HA's , ur fatigue and prevent u from stop breathing...this is very IMPORTANT!!!

  Do u have insurance?..If not check into PICP.gov

There are also clinical trails for chiari that may take u into the trials...do check into that.....

    "selma"

[roktta06]

OMG! I am so sorry to hear this... it is so terrible to see how selfish people can be!!!  Life is not about having fun 24/7, it is about how much you love and care for  others in need AND how to be humble and giving. It is so satisfactory to  see somebody happy because you contributed to that.
I have told my husband over and over again...that if he only would be a little more giving and forgiving toward me I know I would feel much better. but being bullied about my condition it NOT FAIR!  Hold on !!! We wil be better human beings because of this!!!

[roktta06]

Thanks linnielou for caring so much and every one posting... My op for sryingomyelia was 1987 looong time ago... I was not married yet... and before getting married I told my husband everything  . But I did not know that the syrinxs was related to my Chiari Malformation until I got sick of my Neurologist not listening..(he was like a wax museum figure)... and went to see Dr. Goldfarb. He was the one to tell me that my sryrinxs was due to CH. My husband heard but not listened!!! I had three children in a span of 6 years with one miscarriage in between and another after. When my second boy was born he was born with pyloric stenosis. For a whole month he cried and did not sleep 10 minutes in a row! To make a loong story short we ended up in ER with him just barely  hanging to life. My husband NEVER gave me a hand even though I told him that my head was going to burst because I had not had  a full hour of sleep of more than a month. His response..."I am tired too"....the op was a success (thank God) but after the op I had a difficult time in  starting  feeding my baby again little by little. He cried and cried and cried for 2 years in a row!!!!!!!!! we tried every method out there to try to get him to sleep. During those two years I was pregnant and had already had my third!!!!! NO help whatsoever from Frankenstein !!!! I was feeling MISERABLE!
I went to see my Neurologist telling him I was sure I had a huge tumor in my head because the headaches were soooooo bad that it was not humanly possible not to. MY husband did go with me..but here comes the fun part....I was telling my doctor what I had gone  through during those years (sadness, huge terrible panic attacks crying a lot)  and my husband was next to me telling the Dr. ..."I tell my wife she should exercise more....I tell my wife to go shopping and get a life..and I tell my wife bla bla bla ..." the Dr. left everything he was doing and stood up to him and told him..."OK now, let me see...are you a doctor sir???" I couldn't stand it and laughed soo hard. lol
BUUUT that was it..he never again went with me!!!! I guess his ego was hurt!
I tell my friends that he is like dr. jekyll and mr. hyde...he can be so loving but when it come to me not feeling 100% well he is a monster and could hurt my feelings so bad.  
I do not think there is anything that I could possibly do right know to make him understand!
By the way I did not have a tumor..lol...but after thoroughly listening and examining me, he decided to  send me to a Psychiatrist. I was diagnosed with Generalized Anxiety disorder  and major depression!!!

[Missy131197]

my heart is just breaking reading some of the posts.  I have a fabulous boyfriend who is very understanding.  Does he have frustration's yes, he was just recently like 2 weeks ago diagnosed with Type 2 Diabetes so the last 2 months have been absolute hell for us both medically, but he is completely understanding that this is not my fault. He goes with me to appt and offers support in whatever he can. I am saddened to hear that people can be so selfish. My prayers and thoughts are with those struggling.  :)

[selmaS]

  This is a very difficult issue to deal with, and I wanted to add a few links to older threads on the same topic-
http://www.medhelp.org/posts/Chiari-Malformation/How-are-your-SOs-with-this/show/651563?controller=posts&action=show&id=#

http://www.medhelp.org/forums/search/257?utf8=%26%23x2713%3B&query=support+of+partners+

[AmyFS]

Great topic/question!! This was exactly what I was wanting to discuss when I visited the forum today.  I am very frustrated because as one of the postings mentions- everyone thinks that because my surgery was 14 months ago that I am all done- all zipped up-all better- ...WHAT????Don't get me wrong, my husband is wonderful-truly- but sometimes I feel completely alone in my struggle. During the whole miserable process of getting diagnosed and having surgery and "recovering" for a couple of months, he was amazing  Went to the appointments with me, researched, listened & listened to me, stayed with me in the hospital all 5 days through all of the agony and took 2 weeks off afterwards to be there with me.  So I know he "gets it".  I should count my blessing, I know, but I have to vent.  It's almost like he has blocked it out entirely.  He's not rude or disrepectful or anything like that.  The impression I get is that "I've used up that excuse" sort of thing. Like when I say that I feel like my head is going to explode (and I get no reaction)  or I've been having a difficult week physically, or gee, my balance is off today- my symptoms seem to be making one of their 2-week long appearances again...all to little or no reaction.  I don't think I'm looking for sympathy- just empathy? Support?  Someone to say ok, its time for you to listen to your body and rest.  Nope.  It leaves me feeling like a whiner & a victim.  And that is NOT me.  So that upsets me even more.  I feel guilty saying this stuff because he IS such a good man and a loving,sensitive husband, but we recently had a conversation that I will never ever forget (until my chiari makes me forget).  I asked him if he realizes that I still really do have alot of problems. That I don't say this stuff just to get attention, etc. The surgery wasn't a cure. Just a treatment.  That my symptoms come back.  That I don't ever have a single day where I don't hurt. That I will probably never sleep well again (and as a working mom of 2 pre-schoolers, that's a biggie!).  He said that he understands that.  He knows (he works in the medical field so he is more up on things than the average person) that the body takes a long time to heal from something like that surgery.  He remembers how all of the Drs said over & over to us in the hospital that this was THE most PAINFUL surgery they do.  
THEN, when I said, "I mean, it was brain surgery for goodness sakes" he said, well they don't really consider it brain surgery because they didn't "go in there & take out a tumor or fix an aenurysm or something like that. It was Skull surgery, yes and Neck surgery, yes" . OH MY GOD? WHAT???  OK- then why did a brain surgeon perform the surgery? To try his hand at something new for a change? It still makes me so upset thinking about that. I know that he wasn't saying it malicously, but wow~ Not brain surgery? I am still speechless.  He's even watched the videos of the surgery.  I guess those tonsils that were blocking the flow of CSF in my BRAIN were just an pesky part of my neck that were misguided.  That the dura isn't really part of the brain 'cause its on the outside of it.
Sorry to make light of it, but if you have something wrong with your brain or your heart, that's about the epitomy of health problems!
  
That was the first time that I could clearly see that he (and others) think that my "needy time" is done. That ship has sailed.  I should just forget it ever happened and move on. Just like that. That's not what he said and I'm sure it's not what he meant, but that is how it registered to me. One of those crystal clear moments that I relive over & over.  Most people, even those closest to us who endured the emotional roller coaster with us, have no idea that this is really a life long condition. There are good days and there are bad days, but it will always be a part of who I am. Sorry.  If I could make it all go away, I would.
I know it takes alot emotionally out of them (spouses, significant others).  And God bless them for being with us through it all.  I don't know what its like to be on that side of the fence.  Maybe it is something that men in particular need to mentally file away once the "big part" (surgery) is over?  I couldn't have asked for a better partner during the diagnosis,surgery and initial recovery.  I guess my suffering is not as obvious to him now that the scar has healed and my hair has grown long again.
Thanks for listening. Wow, I didn't mean to sound that bitter!   I really do thank God for him :)
It is so good to have this forum where we can share our feelings with people who GET IT!