Aa
is this wrong of me?
I am tired of hearing about others in pain. Theirs will eventually go away. Ours is here to stay. Id like for them to walk in our shoes then they will know how easy they have it without chiari. I have a hard time having sympathy for some people. When no one does for me. I dont want people to feel sorry for me just try to understand this is forever, ya know!
As I read all these posts I am so honored to be part of all of you. Seriously you give me strength to endure one more day because I know I am not alone. I wish so much I would have found this before my decompression as I would have chose another dr but am glad for the amazing advice and support. Selma I am sorry that your family doesnt give you support because you are the glue that holds us together and the time that you put in to welcome newbies and help all with your kindness and support is amazing...thank you. I am going to print that out and post it somewhere!! I had to schedule an MRI for my 7 year old beautiful dd today was hardest thing I have ever done I would go through a million brain surgeries so that she doesn't have to...praying it is just something else!! Luv you guys!
COMMUNITY LEADER
It seems kids do get it, it is the rest of them...and yes, if it is well known and understood then people will give u the benefit of the doubt, but with something they know nothing about, they act like it does not exist.....like how can u possibly have something so awful and I never heard of it...hummm indeed u r the know all , I forgot...lol....sigh...off track....sorry, my mood is not where it should be yet....I am getting there : )
That is so so sweet. I have a 7 yr old GD and a 11 yr lod GS and I'm the same way with them. I like to keep them informed and we watched a show on brains and how it works and it helped them understand, and they have compassion, and understand. Even made them more protective over me.. I told my DH the other night I'm going to create a shirt with Chairi on it so more people are aware. He asked me WHY? Let me see!! No one understand's what it is. If all of us out here in this forum would make even 5 people aware of what it is more people and maybe some DR. will understand us a little more. Thanks for the giggle of your son's respond's. "that's priceless".
You are all so right. Selama, I didnt know that you all had it posted here before, I found this about 6 months ago through all of my research. It is really infuriating, and you are right Selma if it was MS, or a brain tumor...that would be different. Wait, hmm...how is it that if it was a brain tumor, something you cant see, it is understood that cancer hurts. Hmm, Iknow because people everwhere know what those terms mean.
I'm telling you I am going to invent the head cast for Chiari.
The other day a lady knocked on my door and I asked my son to get it, When he answered the door it was someone from one of the churches and my darling boy told the lady sorry but my mommy has chiari and she doesnt feel well. The lady said, oh, I'm sorry ,,,what does that mean, and my son said it means she has too much brain for her head,,,LOL...what a way for a seven year old to put it. I try not to hide to much from him, he is to smart and I dont want to lie to him so I pulled up pics and showed him why I feel the way I do at times, and her brain is to big for her head was his conclusion. It was so sweet. If only others could have the compassion and understanding that a sweet 7 yr old has....
I'm telling you I am going to invent the head cast for Chiari.
The other day a lady knocked on my door and I asked my son to get it, When he answered the door it was someone from one of the churches and my darling boy told the lady sorry but my mommy has chiari and she doesnt feel well. The lady said, oh, I'm sorry ,,,what does that mean, and my son said it means she has too much brain for her head,,,LOL...what a way for a seven year old to put it. I try not to hide to much from him, he is to smart and I dont want to lie to him so I pulled up pics and showed him why I feel the way I do at times, and her brain is to big for her head was his conclusion. It was so sweet. If only others could have the compassion and understanding that a sweet 7 yr old has....
One thing that I have learned through this journey of Chairi is. It's o.k. to think of ourselves for a change. I was such a care giver to every one else and never asked for help etc. that after surgery and the wound's healed people look at me like "Why can't she do this or that?". I have also learned I really don't care what other's think. I think of my abilities of what I can do and enjoy what I can. It's sad that people can look at us and not understand. Having Chairi is tough to deal with, but I also try to look at it in a positive way and I am very thankful that I can walk, talk, etc. a lot of other's are out in the world that can't. I guess what I am trying to say. I knew that life was precious, but having Chairi just makes up look at life a little differetly. It has taught be to appreciate myself, and to take time to appreciate ME. I hope every one else can do the same. Good day my Chairian friends :) Linda
You are not wrong for feeling the way you do.
My boyfriends, brother broke his wrist 3 months ago and he is always whining about the pain.
I just hit my 52nd birthday and have been in pain that I can recall since I was 15. I love Rahe's post. Just because we don't look ill doesn't me we are not feeling like Fido's butt.
Be good to yourself. Eat ice cream, whistle, cry, ... whatever you need to do for yourself. Take care and be well.
My boyfriends, brother broke his wrist 3 months ago and he is always whining about the pain.
I just hit my 52nd birthday and have been in pain that I can recall since I was 15. I love Rahe's post. Just because we don't look ill doesn't me we are not feeling like Fido's butt.
Be good to yourself. Eat ice cream, whistle, cry, ... whatever you need to do for yourself. Take care and be well.
COMMUNITY LEADER
It was not u or ur topic, it is all timing...the losing of a friend....just all of it....
I agree with all u said and understand how u feel.
It is wrong that we should feel like this, and CW is right, we can not let them have that kind of affect over us, we have to live and ignore them right back, selfish or not, is it self preservation......we all have each other : )
<3 u all
Im sorry if my topic upset you..even tho you seem to know the most on the forum, we are here for you to. Vent away honey, you need it. You listen and help all of us..now its your turn. You are the yoda of chiari forum :)
Love ya
Love ya
Sis!
Love Ya sis. Your pain is mine. It's hard when we hurt and can't do anything about it. And when those around you don't seem to get it-that just rubs cyan pepper into the wounds. Huggs sis.. and more prayers. I hope Heather knew what a precious friend she had in you.
CW
Love Ya sis. Your pain is mine. It's hard when we hurt and can't do anything about it. And when those around you don't seem to get it-that just rubs cyan pepper into the wounds. Huggs sis.. and more prayers. I hope Heather knew what a precious friend she had in you.
CW
You are right. No good excuse or even reason but as you stated it does happen. It really urks me as well at times. Well always, just some days I bite my tongue harder than others. Mostly bite out of self preservation... meaning I flat out refuse to allow others to change my perspectives and values in life. So I'll be here if they need me in an emergency but otherwise my life needs living. Yes, sometimes that does make me feel selfish as well but it's life for now.
CW
CW
COMMUNITY LEADER
@Rahe...thanks for re-posting that list...we had that posted on a thread so time ago and it is good to see again and so appropriate for this topic : )
@Sexy.....I really think the reason people ignore us, and our issues is not only be it is an invisible illness to the outside, but bcuz it has no clout...now if it was MS...then it would be different...am I right?
U bet....it is bcuz it is something they do not know, do not understand , so it is easier to ignore....
I too am having this same issue...I asked for family and friends to post something on a diff site to show support...and not one person did...but as soon as I posted a pic of a puppy, they all clicked on it...it is almost like being a leper....really that is how I feel...I am soooooooo angry right now can u tell?
I love the support too I'm so glad to have found you guys! My life has completely gotten better just reading what you guys have to say and that you agree with me everyday! Honestly, i love being here and being able to complain and no one yell at me (like my boyfriend). We are all here to help each other through this and that makes me feel good.
I love and support this forum with all my heart, and my heart goes out to you. I had to explain to two people yesterday why I can't do certain thing's anymore. One of these people had such a confusing look on his face and I just said. "Unless you can crawl in my head for a day you won't understand". I made this statement to my husband one day and he replied "No Thank you". He know's how flustrating having Chairi is for me and how he has to deal with it. Someone once stated they have type A personallity. I have that also, so when I do something I have to do it right, but then I drop thing's and it makes my job even harder. We get through it, but my husband see's this happening to me every day and I'm just thankful he understand's. I appreciate all of you and our time we have together. As you said. To bad we couldn't be united so we could actually meet. Maybe one day this will happen. Just keep making people aware.
Perfectly put, i love it. I always know no matter what i have my family on the firum to count on. Sometimes i wish we werent so scattered so we really knew each other. Everyone on here.....thank you
Aww, ty honey. I'm glad too. It is so much easier getting through the day knowing that you all understand, and that if I need to talk or complain or ask you are all here.
I Love this saying. I found it a while back, and I have pulled it out so many times, because it is sooooo true.
I Love this saying. I found it a while back, and I have pulled it out so many times, because it is sooooo true.
I do know how you feel. I know someone that "adopts" so to say, my symptoms. I cant stand it. She always complains to me, about how much she hurts and how much pains she is in and how bad of a headache she has. I don't think your wrong for feeling like you just dont want to hear it. I have said before if our heads were in a cast, people would "get it " better. In all honesty, nobody can feel the other ones pain, because easy individual is different. Here is something I found. I dont think your wrong though for feeling like you just dont want to hear it anymore.
A FEW DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI
DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY DECEIVING. MANY DAYS I LOOK GREAT, BUT I FEEL TERRIBLE.
DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS. TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.
WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.
DON'T TELL ME ABOUT YOUR AUNT GERTRUDE AND HER CHIARI AND HOW WELL SHE MANAGED IN SPITE OF IT. I AM NOT AUNT GERTRUDE AND I AM DOING MY BEST.
DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED TO BE REMINDED.
DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.
DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD FOR BOTH OF US TO BE MISERABLE.
DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.
DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO IT TODAY. CHIARI IS EVER-CHANGING.
DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.
DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, NOT WITH YOU.
DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE GRATEFUL.
DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.
DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI IS LIKE THAT.
DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU FOR THE PICNIC AT THE END OF THE TRAIL. PLEASE LET ME DECIDE.
A FEW DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI
DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY DECEIVING. MANY DAYS I LOOK GREAT, BUT I FEEL TERRIBLE.
DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS. TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.
WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.
DON'T TELL ME ABOUT YOUR AUNT GERTRUDE AND HER CHIARI AND HOW WELL SHE MANAGED IN SPITE OF IT. I AM NOT AUNT GERTRUDE AND I AM DOING MY BEST.
DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED TO BE REMINDED.
DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.
DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD FOR BOTH OF US TO BE MISERABLE.
DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.
DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO IT TODAY. CHIARI IS EVER-CHANGING.
DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.
DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, NOT WITH YOU.
DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE GRATEFUL.
DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.
DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI IS LIKE THAT.
DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU FOR THE PICNIC AT THE END OF THE TRAIL. PLEASE LET ME DECIDE.
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