What To Do When You Don't Know What to Do?

Hi Gang:

Crazy question, I know!!!

Was wondering if any of you guys ever felt like this.....Where do I go from here...what do I do now...

So many physical isssues with no real answers.....meantally beating yourself up b/c you feel worthless..non-productive.

The lonliness that doesn't seem to let up....afraid to leave the house.

Anyone ever feel like this????



Lori, you are not alone in this. On top of all of what you listed I feel guilty a lot of the time, because I don't feel like I am giving my kids everything that they need. My daughter would love to be back in dance, but I am terrified to even drive her there! I have been told by a therapist that I have generalized anxiety disorder. I know that I have had this problem, pretty much my entire life, but I will tell you that since finding out about Chiari, it has progressed much farther than it ever has. Please know that you are not alone even though it feels like it most of the time!



Thank you so much for replyng.......Thank you for your sincere words of understanding and kindness.

You are right..we are not alone.....thank God for people like you!!!! This site is the best.

I totally relate about the driving!!!!!!



I am actually happy that you posted this, it shows me too that I am not the only one! I am truly greatful for this site, it shows me everyday that there are other people out there going through the same things as I am.



Honestly, I was a bit scared to post it...b/c it is kind of a downer and I feared that it may make some of our newer members feel depressed, ya know???

But I prayed about it and posted my thoughts and feelings. Lately, I have had a time of it..that is not to sy that I don't see the light at the end of the tunnel...I Thank God for my relationship with Him as well as for you all here on our site.

Yes, Crystal....many of us here share the same emotions as well as pains!!! Thank you for being so honest.




Don't ever worry about being a downer, this is a place to share both the good and the bad! We want and need to hear it all!!!!


You are not alone & thank you for posting this because I can totally understand how you are feeling, I feel exactly the same way.


i do right now, i have been like that for 2weeks

i decorated my friends wedding, it was a hard, (i dont do weddings anymore due to it making me worse)

i took 2days and then i came down with all the crap that i get when ive overdone. im now paying for it,

and what makes it worse is my husband dad rings and my husband jumps, no thought for me and the kids, he spent 3nights and most of the weekend doing hay making, i understand that things need to be done, but come on, last tues we had to drive out of town for an MRI (1.5hr) and then back, i find this hard on my body, and he went straight out to dads and didnt come home until 10'30pm, and then to nights after the same thing but instead went straight from work, i had to deal with the kids and cook and bath and put them to bed with no help, at that stage i couldnt walk properly and i couldnt breath, i felt doomed and wondered what was the point of it, how in the world was i going to cope, this cant be what my life is? i felt that i didnt come first in my husbands mind. i spent some of the weekend crying du to feeling like i wasnt good enough, or that he cared enough to be with me and help when i really needed it most,

on top of that im feeling the dread of the results and know that they would be in, in about 4days, the wait on getting to know if the tumor in my spine is cancer, my brain is playing with me know, and i dont have the one person that should be there by my side,

im house bound i dont leave unless its called for, i get so tired and sore if i do to much so its easier in the long ran to stay home,

my husband and i have bearly spoken all week, i just feel so hurt, i feel really alone i also started thinking how many mg of morphine do i need to overdose, dont get me wrong i wouldnt do unless i was bedridden and dying, but i bet everyone who reads this will agree that in some part of all of this, have thought about that in some way, i miust admit it was nice jus to drift into my own world thinking about it for 5mins,

i didnt want to go though this alone and feeling like i wasnt good enough for love and support, when i really need it i feel there isnt anyone i could turn to, or that they would understand,

i do feel like ive ruined my husband life, i know he feels trapped and blames me for it all, but he is also selfish and cant see infront of his own nose, i sometimes think i should leave and so him and the kids can do better than a sick mum and wife all the time,

lori this is me just over the last few weeks, i have this issue all the time, but dont voice it, i dont want to look like a drama queen, (my given name from my family)

i dont also ask for help, ive learnt the hard way not to do that, but you have support then reach out for it,

i know that on this site we are not alone and i do feel better after ive been here, but im a person that needs personal contact, some one i can show my emotions with, a friend to hold my hand, make me a cuppa, or let me cry on their shoulder,

you cant get this over the internet, so in some ways im still alone dealing as i can, '

that sounds really bad, and sorry to put that there,

this site helped me so much over the last 3.5yrs

im also glad you posted it too, im sorry i rattled off about my issues, i needed that also,

ill stop there,

lori we might not be able to be there physically but in some part emotionally we are,

Hey Destini....

I am sorry that you feel this way as well...but now that we know others feel the same way...we can help one another in that area, ya know???

Joelene, hi there: So sorry you are feeling the emotionally disconnect from your husband as well...never mind the rest of your family...I swear..I think my family must roll their eyes at each ailment!!

Totally get ya when you say you need that personal contact.a hug, a shoulder to cry on...ect....This site has helped me so much..I cannot begin to say....but I too wish I had someone here who 'got it'.

I love you honesty ,Joelene!!!I oft times feel the way you do about just going to sleep forever.when you tell about the morphine...I feel as you...would never act on it ...but , honestly, I have had times that I could care less if I ever woke up or while driving....hit by a huge truck!!! Thank God those feelings pass...it is not easy to admit to having those feeelings...thank you for sharing your....You are not alone.

Men are a different breed!!!!!! I need to have a 'sit down ' with mine and fill him in on my feeelings...I hope you get your feeelings out to your hubby too...it may help .



I think I have to agree with all of you. I thought the family would be more supportive and understanding knows that 2 of us have it. Boy was I wrong. My sister and I are like night and day. I have learned not to tell anyone how i feel or if im upset, having bad days or anything. My new answer is to everyone im fine. The only one who really sees is my son and he is my rock. As for a partner in life, I have for now choosen not to burden someone with my health problems. I just want to be left alone. Only a few of my friends know and they are the ones who check on me and make sure things are ok. Sometimes i think it too would be easier to check-out on life, but i want to see my son grow up.

Love and prayers to all

I can completely relate to all of this. I’m tired of being a burden and feeling like I let everyone down. I live with my mom, my sister and her husband, and their two kids…but I feel alone and isolated most of the time. It amazes me how much this disease has changed my life. I too have chosen not to get involvee in a relationship right now…I don’t feel like I have anything to offer and I don’t want to be a burden on anyone else. I was 27 when a car accident changed my whole life. I’m 32 now and I laugh (on the inside) when people tell me these are the best years of my life. I sometimes wish that I just wouldn’t wake up one morning too. I feel guilty about this, because my dad took his own life and I know firsthand what that does to the people left behind. I’ve actually been angry with him for taking that “option” away from me. Kinda sick…I know. But, you can’t help how you feel and we have all been through a lot. I’m so glad that I found all of you. It does help to know that I’m not alone in this. But, I agree, a real hug would be nice. Thanks for being so open and honest with your feelings…it sounds like we all needed it.


Hi Monica....

I am glad you have a few friends who do check in on you..family...well..thats another story, right?? How old is your son?? You do need to be there for him....even though some days stink so badly you just want to crawl up and die...thats how I feel some days, anyway....hang in there....We got each other here on this site....I need to keeep that in mind myself when I am very down!!!

Hey Crystal.....I know that feeling all too well...being in a house full of people and still feeeling alone..that , i think is the worse...I am sorry to hear that about your dad.

You guys here are the best.....thank you for letting me tell it how it is for me , right now and not judging me...I feel judged by my family much of the time...can you all relate to that???




I am so glad you started this discussion. I know exactly what you feel like and I can totally relate. I feel like a burden, a waste of space, not useful to anyone. I had got my hopes up too high in thinking that my family would be there for me after the surgery. The way my mom, gma and sister treated me threw me for a loop. I could not believe the way they acted! When I was younger I was always the trouble maker, so to speak. My sister was Miss Goodie Two Shoes and never gave mom any trouble. She was babied to death by my mom and my gma and my gma had babied my mom when she was little, as a matter of fact at 56 she is STILL babied by my gma. I was a mistake and my sister was planned. My mom would drink men under the table at bars when she was pregnant with me and didn't drink alcohol at all with my sister. Not that alcohol had anything to do with me having Chiari, but she didn't exactly take care of herself let alone me when she was pregnant. I remember so many times as a child of getting my hopes up on things only to get let down, time and time again. Nothing was ever easy for me. I used to say and I still believe that if it wasn't for bad luck I would have no luck at all. The best luck in my life was having my twin boys, and even that was hard as I had to do invitro fertilization just to get pregnant. I prayed and asked the Lord for just one baby and he blessed me with two precious bundles of joy! They are truly the only good that has come out of my life.

My husband, he is the step dad to my boys. We have been together for almost 7 yrs and married for almost 5. He is 7 yrs younger than me. We were together for about 4 yrs before my sx's became progressively worse and married a year and a half when I finally got my dx of Chiari which at the first they had thought was MS. I have told him numerous times that I feel he would be better off without me and that I was just ruining his life. I really feel deep down inside that he wasn't ready for an "instant" family of a wife and two kids. He never wanted any kids. He likes to go out and do things and I used to at one point in my life. We did have fun when we first got together. We would go out to the club or to a movie or even just out to eat. I was energetic, loved to have fun, a hard worker and laughed alot. Once I started going down hill, so to speak, that is when I knew my life, our life, would never be the same. I have heard hurtful things from him like "I want the old energetic Tara back," " At one time I felt like you PURPOSEFULLY left your job at the peds office,"... Yeah, I just left an awesome job that I loved and had dreamed of working and was making good money for our family just like that. What a crock of shit that was for him to say. Not only did it hurt me deeply, it really, really pissed me off!!! I would give anything to be able to still work at that job, heck any job would do right now. We have had to move 2 times in the past 2 yrs due to struggling to pay the bills, our only car broke down twice in 2011, my son Noah has Spina Bifida Occulta and had to have de-tethering cord surgery Mar. of 2011, my best friend lost her first born son at the age of 17 due to being struck by a car while walking home, I was denied SSI in Nov. of 2011. So 2011 just sucked period and he has the nerve to say I purposefully quit my job. I could've smacked the holy hell outta him. My blood was boiling, I tell ya.

He has never been nor will he ever be an emotionally supportive husband. I can't tell you the number of times I have tried to tell him how his actions and words make me feel and that I just need for him to hold me and let me cry on his shoulder. That has never happened. Most of the time when I talk to him he just stares at the t.v. or changes the subject. Here I feel like I am ruining his life and that he deserves to be with someone that is active and doesn't have a brain disorder and can keep up with him and he treats me this way! I am a person who has always been empathetic. I try to put myself in others shoes and see how they feel. Well, I have become pretty much numb to him and how he treats me. I try and not let it get to me and I just keep telling myself that when I get more recovered and IF I can work again, or even get disability.. I will leave. I cannot see living my life with him after everything he has put me through.

I have told him and my mom that I am on 7 different meds and how easy it would be to take them all and just lie down and never wake up. I get soooo tired of the pain, depression, stress and worrying everyday. I am by myself everyday for over 12 hours at a time. It would be so easy. But I choose NOT to take the cowards way out. I know that I cannot leave my babies without a mom, especially knowing how their dad acts and how he is. That's another long story. So, I fight. I pray to God every night that things will get easier, that good luck is bound to come my way again. It is a constant battle everyday. My life has completely changed forever and I don't like change so it is something that is taking me a long, long time to deal with. A very bitter pill to swallow. I Thank God everyday for this website. I sometimes wish I could just reach out online through my laptop and give each and everyone of you a great big ((gentle)) hug! I love you all very, very much. Thank you for being my lifeline and always being there for me!

Love and gentle hugs,


ohhh tara.....

hpw my heart goes to you. my husband said to that if i ended up in a wheelchair he would leave me, if i put on weight he would leave me, as he didnt marry a fat girl, he has number of times told me that i controll him and that i hold him bak from the things he wants to do,

we had a weekend that was quiet, and we just relaxed which i thought was great, but at the end of it he told me he wasted his weekend sitting here with me doing nothing, i had a cuppa tea and my hand and threw it, it hit him in the head , i didnt mean for it too get him, and i felt me, but what he said made me feel i wasnt good enough as im able to be active like him, i was also laughing in the inside and thought serves you right, i nearly left him after that,

the other day i had my niece stay the afternoon, and i wasnt well, but when hubby came home from work, he asked me what was for dinna, i said depends on what ya making, he looked at me and said, youve been sitting on your arse alday doing nothing, i relpied i thought you werent going to talk to me like that anymore, all i heard as he walked though the house was im sick of the s...., just f.....off.

so i left, i was very hurt, when i arrived later he said sorry but the damage has been done,

i sometimes wonder why im here with him, the emotional struggle isnt good, i battle everyday to keep my head up abone the clouds and with talk like that, its harder to do it, its emotional abuse, i get that from my family but dont want to from my husband,

i do love him, and we arnt finished with eachother, so its not my time to leave,

my parents also told me they would give me help if i left him, i was shocked, why do i hve to leave my husband to get family support, they should just want to help me anyway,

when i was getting ready for decompressionn surgery, i just got rung from the hospital to be in the next day, it was 1.5hr drive, so i told everyone i was going in, and i never heard from my parents, so later that night and txt them and told them how i felt, i said, im going for brain surgery and i thought you would atleast show some interest in your daughter while shes going for a dangerous surgery, and that i know you dont like me, but i love you and need your support, well dad txted back and said he pop in after mums walk in the morning, mum turned up during her walk and said goodluck, i cried, thats the first time they showed interest, never mind that i had to point that out to them, i was really scared, i just wasnt going to have decompression i was also going to have my back ripped open,

my first back surgery i got a txt from mum sayign goodluck about 10pm the night before surgery, they didnt even see me before we had to drive 1.5hrs to the hospital,

i was lucky that one of my friend took all 3kids for 2nights, so hubby could be with me that night and the next morning,

now im getting ready for num 3 surgery, i see the surgeon on fri, my dad is asking every time i see them when do i go up,

for once in my life they are showing something, other then disrespect, and told i have a split personality.

lori i also look at trucks and think if only i turned the wheel, but i know in my heart that its not the right thing to do,

mu grandfather killed himself, we all had unanswered questions, so i know i cant do that, but i just want to sleep and to never wake, 'i sometimes go to sleep and wish i wont wake up,then i wake up then another day starts,

im sick of talking to my husband about it, and he not listening, so why bother now,

i sometimes wish i was into god, to have faith, but im spiritual instead, and believe there is a bigger picture.

my mother believes that i must of been really bad in my past life to get what i have now, lol

at the end of the day its up to each of us to stick together and do things that are right for us as well as other people, we can only wish to do the best the we can,

love ya


Hi Jolene,

Sweetie, I was in tears while reading your post. Sounds like our hubby's are connected to the same "stupid" brain. lol I once threw a remote at mine and it hit him in the side of the head! Now that is odd because usually my aim is VERY off. I immediately said sorry, but I couldn't help laughing so hard I nearly fell off the bed. LOL May sound mean, but he deserved it. I hate the way he talks to me, or when he gets in his quiet spells. You know the saying "Actions speak louder than words"? That is him to a tee! And I never get any "Sorry" or "I didn't mean to hurt your feelings". He is very cold hearted and unemotional, unless it is anger towards someone he works with.

Since my dx I had put on some weight. At first my husband liked it. He said I was too skinny when we met. I was 117 lbs. so yeah, I guess I was pretty thin. Well, my weight just kept going up. I would be 125 and then 135 (which is where I wanted to stop) and by the time I know it I am at 196!! That is the biggest I have ever been. I got up to 188 when I was pregnant with my twins, and they were 8 weeks early. I had been to my family doc and I do have a thyroid nodule on my upper left lobe but my thyroid blood tests kept coming back normal. I thought something isn't right. All through my childhood I had been skinny. I took after my dad's side of the family. Now, it's like if I even look at food I gain a cpl of lbs. My self esteem went way way down. I was running out of clothes to wear and no extra money to buy any. I mean what was the use, I didn't go anywhere anyway anymore. I think I am still grieving the old me. The skinny, energetic, fast paced busy body running here, there and everywhere. Now, I absolutely dread going to the grocery store or having to run any errands. I used to love to dance and go sing at Karaoke bars and shop. I can do none of those things now and it is killing me inside. I struggle everyday.

What has really been upsetting is the lack of my so called "true" friends coming to see me. We have been friends since childhood. One lives just up the street from me! No visits from her or any of my friends to date and I will be 5 wks post op tomorrow. I can remember living 45 minutes away and coming up to visit them every other week. I took that time because I wanted to keep in close contact with them. And for them not to give that back, it just breaks my heart. It hurts sooo bad.

Plz keep me informed about your upcoming surgery. You will be in my prayers each and every night sweetie! Know that I will always be here for you anytime you need me to. We Chiarians will stand beside each other, support each other and grow STRONGER together!

Love and Gentle hugs,


Thank you , Abby...

You are the best and I know that you are a sincere person....that is why your words are so valuable!!!

God Bless you and many thanks for your uplifting words!!!



hi tara,

i also love dancing and singing, but find i cant do it the same, but my goal this yr is to do it again, i plan to go back to dancing for myself, and then maybe go back to teaching burelsque again, but for now i need to do it for me, i love love latin and ballroom, i did a few comps and was teaching it a few yrs back, but now i need it for me,

i helped a friend the other day, as they are getting married, i helped sort a routine and it was great to do that again, it made me realise what i was missing, but no matter im going to do it,

im sorry your weight went uo like that, it mustin be easy to deal with that on top of it all, im lucky i didnt put on alot of weight, but i still feel unworthy, im trying to find my sexy side again, i think thats why i love burelsque as it reminds me that no matter what size i am, I AM STILL SEXY, lol

i do miss teaching it, i love watching the ladies attutide change and see the beauty in themseleves,

our husband must of came from the same tree, so to speak, my husband said no matter what tonight you are going to talk to me, then he went outside, and then came in had a shower and went to bed, yeah thats action all right,

i am a true believer that action speaks louder than words, and by those actions you shall be judged, lol

and well my husband is judged by not what he is doing, but by what he isnt doing,

abby.... your words are always uplifting, and i thankyou for being part of this group,

lori..... how are you feeling?



You are wise beyond your years , my friend!!! Actions do speak LOUDER than words!!!

I totally get where you are coming from when you mention feeling unworthy..and trying to find your sexy side again...Joelene, give yourself some credit here..you are taking action to find yourself again....I however, am not there yet..LOL..I look like a hag most days...I do shower, though....Ha, ha...

I guess we cannot change the people around us and how they act....I am trying to work on lettting go...trying not to beat myself up b/c the house is not spotless, ect....I get zero help from my girls..thats my fault...spoiled them!!!

Hubby does help out...but he has to 'be in the mood' to get stuff done around here...Christmas lights and a huge Santa is still on our front porch!!!!

Yes..you are right.....our hubbys all come from the same tree!!!! It's a nice tree, most days...LOL

Take Care ,


oh lori.

have to agree its a nice tree, just sometimes it would be nice for them to think about what needs doing instead of being told, they can see things just the same as we do, but in some ways, we do have to give them credit,

my husband works hard to provide for us, so we dont have to stress about money, we have a nice house we own and in acouple of yrs be freehold, but as a wife and husband we do lack in somethings i see in other couples, but thats alright too, i tend to judge

sometimes we cant change other people but we can change ourseleves, our attutudes sometimes need work as well,

its ok if the house isnt perfect, we also have kids and well they are selfish at the best of times, so they dont cleanup where they should, or not think of anyone but themselves, but thats children, but over time they will grow and have a family and then go..... why arent my kids listening? lol then we can all laugh when that day comes.

lori you are sexy you just hide her away at the moment, cause you dont feel valued, but i see you in your messages and i can tell, you are a wonderful sexy strong women, you have a way of making others feel better, and i bet you are fantasic mother, who loves her children, you try to please your man as you can, but feel you let him down, but its you, that you have let down, so the time is coming for you to show that women again, the world is waiting,,,

love joelene


Thank you for your kind words ..I feel uplifted right now..God Bless you.

Today is Julia's 12th birthday and I am very anxious that all goes well for her...her party is tomorrow nite for her friends..tonite it will be just family. I get weird when it comes to the girls...wanna fix everything and make sure things are the way they want them...all you moms feeel this way I am sure.

I just wish this major anxiety would go away!!!!

Thanks Again for yur kind words!!