Hi, I'm new to this site but not new to Chiari. I'm glad I found you. This Chiari stuff doesn't fit in with the family. They dont see it, so it isn't there (to them). Anyone else have this problem? What keeps you from heading for the door? Don't get me wrong, I do love them, but the pain of this they don't understand so no support.
How do you deal with this issue. I'm tired of hearing I'm out of my mind. Or that I forgot somrthing on purpose. Whats up with that anyway. Hateful is what I hear too. Wonder if they understand anything about this. I wonder if their so selfish that they dont care.
I'm on Nucynta for pain. I forget just because I forget. Or its a pain day and I forget. If they cant help or support me, why do they bother with me. Could be worse I guess. But could be better.
I dont complain about a BIG PAIN day. Today was a pre-op for eye surgery and really wanted someone to drive me. I didnt state why cause I didnt want to put anyone out. So there I went alone without the pain meds. I mean they know my vision is gone in one eye....shouldnt someone have said sure? Both adult daughter didnt have to work today. Nor my husband. ???????
Are you feeling any better? maybe go to ER for some help. I would.
Hello Hollerhick & Welcome !!!!
I think we all go through times when our loved ones don't understand. They actually cannot conceive what we go through on a daily basis. They cannot feel our headaches & know how bad the pressure can be. I know you are hurt. I have a very supportive husband and daughter. I hate though how other relatives always compare their minor pains and aches to mine and it makes me want to scream. I also have memory problems that causes ocassional problems, but I try my best. That has to be good enough. I have read many posts about this same subject. I wish I had some advice to give you to make things better. Just know you can always come here and vent. We truly understand & everyone is great in the discussion group. Please stay in contact. This group makes my days much easier to bear.
Best Wishes,
Tracy Z.
NO Katie your not whining. I know those girls are precious and you wish it could be different. Same as me. Im a loner too. Married but VERY often think about leaving. I try to hang in there but seems like its for them. I am praying for you my new friend. I want to hear your OK after this surgery. Yes your father was a major asshole. I'm seeing my husband that way now. I do relly on God. I love him. but i don't practice any religion. I feel religion is of man and God is of love. He hears us without the preacher right. God bless your Mom for being there. My parents died awhile back. We knew something was wrong with me but never knew what. I'm glad she"s not here to see this mess.
I guess with so much worry...and I'm sure she is worried, she too can be cranky. She"s earned it too. Im gonna try the sleep thing now. but i will be looking for you on here. Take it easy and I'll be praying for you and that wonderfull mom and kids. Thank you for being here. You have helped me and my bitterness.
Hollerhick & Katie, (((hugs)))
Families can be challenging even in the best of times. I’ve always been the strong one so when I got bad last year, it was very hard on them. My husband and girls have been great. My extended family has had a harder time dealing with things. I’ve come to accept that they are doing the best they can with what they have.
I do think my girls are closer to each other after having to rely on each other while I was sick last year. They are 21, 15, 14 and 2.
Diana
Hollerhick,
First of all, welcome to the group! There are a lot of great people here that understand what you’re going through. They have helped me so much and we’ll all be there for you too:) A lot of us can relate to how your family is treating you. My family often makes me feel like a burden and a disappointment. This is very hurtful, especially with everything we’re going through. Having chronic pain/illness is physically, mentally, and emotionally exhausting. It is impossible to understand this without experiencing it, which is one of the reasons this site is so helpful. We get it! I do have some suggestions to help though…In the resources section, you will find one page printouts that do a great job explaining our conditions or have them read some of the posts on this site. What worked for me…I posted some Youtube videos about Chiari and Syringomyelia on my Facebook to help raise awareness and my family actually watched them. My mom even apologized for how she’s been treating me! Granted,my family still has their moments, but it’s better than it was. I hope this helps:) Either way, you’re NOT alone. I look forward to getting to know you better!
Crystal
Dear Hollerhick....
Oh BOY!!! I think most of us here have dealt with the same feelings you are right now..at least at one point or another. I feel for you, sincerely. Been right where you are at!!
I suggest you get the book.."Contents Under Presssure" by Ray D'Alonzo..Ray tells of his Chiari journey..I wish I had my family read it!!!!!
My husband told me not that long ago that he and the girls are desensitized by my health problems..that was a kick in the teeth...but part of me understood....part of me was flat out PO'D...mainly b/c I feel as though I pretty much pull my weight around here.
I have 2 girls ages 12 and 15...I really think that since I do not work outside this home that I can do everything!! I try not to whine and complain..but honestly, I do at times!!
I really think that b/c Chiari has tons of symptoms..people cannot truly 'get it'...If I listed every ailment ..they would put me away in the looney bin!!!
Thankfully, I found this site about 1 yr ago...and let me tell you....the gang here is TOPS!!! They 'get it'.
So, my dear, welcome..and know you are not alone..you have a place to come where you can get the support you need and so DESERVE!!!!
I am glad you posted your feelings and brought up this topic...most of us have dealt with similar feelings.
peace,
Lori
Tracy thank you for the welcome and encouragement. I do have my melt downs ocasionally. Venting hear does no good. I get that "sure whatever" look. Im 50 and chose no surgery. Its scary after previous surgeries that went way wrong. Just got my ssd. I felt like i"ve been validated. well at least i won one for chiari anyway. Again thank you.
TracyZ said:
Hello Hollerhick & Welcome !!!!
I think we all go through times when our loved ones don't understand. They actually cannot conceive what we go through on a daily basis. They cannot feel our headaches & know how bad the pressure can be. I know you are hurt. I have a very supportive husband and daughter. I hate though how other relatives always compare their minor pains and aches to mine and it makes me want to scream. I also have memory problems that causes ocassional problems, but I try my best. That has to be good enough. I have read many posts about this same subject. I wish I had some advice to give you to make things better. Just know you can always come here and vent. We truly understand & everyone is great in the discussion group. Please stay in contact. This group makes my days much easier to bear.
Best Wishes,
Tracy Z.
Gees Lori I thought I had the only desensitized. I feel like my husband could care less just as long as meals are ready. My oldest daughter...just as long as i'll keep the littleone now and then. and the youngest...as long as i can not put her out cause shes busy. Really....I could just leave and leave them guessing. I will get the book your talking about you have me curious. Do you have problems with nystagmus?
lori said:
Dear Hollerhick....
Oh BOY!!! I think most of us here have dealt with the same feelings you are right now..at least at one point or another. I feel for you, sincerely. Been right where you are at!!
I suggest you get the book.."Contents Under Presssure" by Ray D'Alonzo..Ray tells of his Chiari journey..I wish I had my family read it!!!!!
My husband told me not that long ago that he and the girls are desensitized by my health problems..that was a kick in the teeth...but part of me understood....part of me was flat out PO'D...mainly b/c I feel as though I pretty much pull my weight around here.
I have 2 girls ages 12 and 15...I really think that since I do not work outside this home that I can do everything!! I try not to whine and complain..but honestly, I do at times!!
I really think that b/c Chiari has tons of symptoms..people cannot truly 'get it'...If I listed every ailment ..they would put me away in the looney bin!!!
Thankfully, I found this site about 1 yr ago...and let me tell you....the gang here is TOPS!!! They 'get it'.
So, my dear, welcome..and know you are not alone..you have a place to come where you can get the support you need and so DESERVE!!!!
I am glad you posted your feelings and brought up this topic...most of us have dealt with similar feelings.
peace,
Lori
Thank you Diane for the encouraging words. I keep trying to take it on the chin. but pretty tired of it. One day at a time might get me through it. But on the BIG pain days I can just walk away from them all. Ill keep plugging away as my great grandmother use to say. (((hugs))).
Diana Smirl said:
Hollerhick & Katie, (((hugs)))
Families can be challenging even in the best of times. I've always been the strong one so when I got bad last year, it was very hard on them. My husband and girls have been great. My extended family has had a harder time dealing with things. I've come to accept that they are doing the best they can with what they have.
I do think my girls are closer to each other after having to rely on each other while I was sick last year. They are 21, 15, 14 and 2.
Diana
I get this from my parents since I told them. My kids and significant other tease me but i know they understand cause they watch it daily. My parents on the other hand "I'm bsing them" Just dealt with this today when i went to see them
Hollerhick, I think u r getting great info from the posts prior. I definitely recommend u have ur family read some discussions on here. I was so upset with my mom bc after my 2nd opinion and the ns saying my issue is not with Chiari she acted like well…forget about it now and move on! I was truly in disbelief and hurt so bad. Ive tried explaining this to ppl and it’s just so hard for anyone to get it without bn one of us. One day I was fed up with everyone trying to figure a simple solution to fix me I just told them tht if they spent half the time they spent on telling me why it wasn’t Chiari on researching and actually trying to understand it, we would all b better off. I told them simply I do not want to hear anymore dx from u all, it’s my body I know so unless u want to learn about Chiari…don’t talk to me about any of it. I had them read some on here bc so many of us have been told the same things, felt the same symptoms(u know, the ones tht are Not Chiari related) and experienced so much of the same emotional pain as well. I asked them how could this many ppl all over the nation feel so connected…are we all crazy? I mean that’s a lot of crazy ppl doin the same crazy things. I really think it helped them get it more and realize its real. I’ve never been a complainer and I have an extremely high tolerance for pain…made it thru two child births jus fine without all the pain meds ect…but this Chiari thing…it’s kicked my butt all over the place! I feel u and Katie, I feel u, there r days I just wish God would take me n I could b done but we have to stay strong and bring awareness to all the Chiari ignorant ppl in this world so it gets easier for our future chiarians.
Sorry I’ve rambled, I just feel so bad for u bc I know how bad it hurts to b in ur position. I will b praying for u and if u ever need to rant, this is the place for it, these guys r awesome and have helped me keep my sanity not only by all the kinds words but also by me bn able to b here for someone else, tht helps me so much bc I often feel so worthless since Chiari took over. U r stronger than what anyone could know, u r hurting with one of the most painful illnesses, mentally and physically, but look at u, u r still going strong and have a lot to offer. Please try to talk with ur fam, this can easily destroy families and nothing good comes out of tht for sure, stay positive and Plz keep us posted. We’re all here for u!
I usually just ignore what my family say or I bark back at them. I have a very supportive husband. As for my daughter she has my husband and I that support her. She understands when I say my head is going to explode, she will be quite as much as possible for me. I think its hard for people to understand what you are going through if they have not been through it. You have lots of people here that will listen and help be supportive.
Susan