alone

[Sexybare]

I feel so alone on my journey with chiari. I have everyone on this forum and am very thankful I found this. But here at home I am very alone. I'm tired of tryin to explain how I feel and how my symptoms effect my life. To family, friends, even my bf. I talk to them about it but recently have stopped talkin ti my bf about it because its not like he even remotly gets it and I feel like he's not even listening anyways. I am doing thing at home that I shouldn't be which is setting my recovery back. I need to tell myself to stop. But I can't neglect my pets. My bf works so ya think he'd wake up early to make sure they are all fed and taken out. Nope, I do it when I get up...I need to take a step back and remember I did have brain surgery, again. I am just alone and have no one here to express myself to. Everyone here will never understand exactly what I go thru daily. Thanks for listening

[selmaS]

  Dana,  I hate to admit it I know just how u feel.....I am stuck in the house as I can not drive, and I am here 3 yrs....and I feel the same, when there is a family function going on they all call and ask if I will be there, but no one calls to offer a ride, and if they do, I have to bring stuff and carry it around from the back of the house so they do not have to come back to the driveway....ugh, oh and I should be waiting....they make me feel like a thing instead of a person.....I was so fed up I refused to go to the last function....sigh.....

I think they r so self absorbed that they do not realize what they r doing, so I told them and walked away....my DH doesn't want to see my family as he is afraid he will tell them off....lol...like I said I am lucky to have him...but  I have friends that say y don't u call.....well I did, and left messages and after 15 or so with no return calls  it just gets hard to keep doing, I said the phone works both ways u can call me, I am always there...lol...

  I hate we have this in common, but it is human nature to pull away from what they do not know  or understand or hurts...like if a spouse died we would get the same reaction from them, like we r the lepers....

They stick their head in the sand and avoid what they can....all the while thinking or remembering us as we were b4 and that makes it easier on them.....

neway that is how I see it.

[STL5]

I am sorry to hear that you are having such a difficult time.  Unfortunately, most will not get it.  I am very fortunate that for two weeks after my surgery my aunt stayed with me and my 4 children lived with others.  I had so many people come visit me at the hospital and would check to see if I needed anything from the store or would bring food.  I was literally spoiled for 3 months.  I am now back to my regular routine of constantly on the go and exhausted but I know how blessed I am to have so many caring people in my life- even if they don't understand the day to day things I live with now.  I wish I lived a little closer to Michigan so I could pay back some of the kindness and generousity shown to me to someone else in need.

[Sexybare]

I've been alone since the 24th of aug. Since we got home from colorado. No one has stayed with me. I feel as no one cares. They ask me if I need anything when its convenient for them. Not to mention have had a headache for 2 days now and people keep waking me up. When I don't feel good, no one does anything for me, but they got no problem bothering me. I have a funny feeling my bfs son may come here this weekend. He's 16 years old but he's loud and obnoxious and a pig, never cleans up his stuff. But he's my bfs problem, not mine. Lol. I used to like people, but I found out who respects me and who don't. No one has even come to visit me since my surgery. I may not be able to go out but its nice just to have someone around.

[selmaS]

  Hey Dana, I know how u feel, it is like at times we do not exist, we can talk about Chiari and say how we feel and they turn and say y do u do this or that...ummm I just explained y....sigh....

Right now with it being Chiari awareness month I am seeing it more how my family and friends do not get it, as not one has passed along the info I have asked them to....

I am lucky to have my DH, he does get it....and for that I am grateful, and not sure what I would do without his help.

All u can do know is try to hire a dog sitter, ask a neighborhood teen u know to let the dogs /animals out and feed them....walk them etc....they all have community service they must do to graduate suggest it as their project u will sign off for.....

Even ur own kids r old enuff to help with this chore, and tell them it is now their job....stop doing it as that is y they do not.....

  Wasn't ur mom with u post op?

  hang in there and try to get rest.... ((hugs))

[Sexybare]

I just wish I had someone here to take care of me for once. At least for the few weeks after surgery. Didn't even invite my bf to come to my 2 mo post op visit. Just my mom.

[FlowerGirl123]

I am sorry and can honestly say, I know how you feel. Trying to explain to anyone I know, how I feel.. is like trying to pull teeth. Maybe have your doctor/NS explain to your bf about how much you can and cannot do.. and DON'T hurt yourself by doing too much or pushing yourself too hard. I hope things get better.

[irislita]

Sweetheart...i think we all have that feeling more or less.i sometimes just cry in my pillow and feel so alone.i feel i am getting on the nerves of everybody even my doctors.chiari is really something u cannot explain.and i honestly never thought that u can feel sooo bad.we all understand u.i also feel so alone,i dont have any of my family here...i never knew how lonely u can feel in this big world.i am sorry u r going thru this...i send u a big hug

[cash242]

I am so sorry you are breaking my heart! It is so hard and you are so strong! Please never forget that!