Have you ever had the feeling noone likes you or that your all alone. Thats what Im going through. I have been wondering what I have done in the past 4 years to lose sooo many famlie and friends. I have been waiting for my voice and speach to return it been over two weeks I have only left the house once and didnt last long when we ran into someone we new and I had to speak. I sound like A retard. It is my voice to start then I sound like someone straining to talk If I continue then I start loseing word structure. Augh!!! Hmmmm If givin a choice .Vision Speach or mobility whitch one would you preferr to keep and what one could you live without. The reason I have no friends or famlie is I think Im loseing my ability to comunicate through speach. How can I communicate
Twana,
I am glad to call you friend. With as many health issues as we have, it's hard for people to know how to be around us & instead they stay away & it can be very hurtful. I lost a very close friend because I couldn't do things like I used to & had to cancel a lot. Please know everyone here understands.
Big Hugs,
Tracy Z.
I understand totally where you are coming from. There are afew i talk to on phone because they understand what is going on and are dealing with neuro issues to so have some speech problems, i've lost most of my friends except one from high school, she's one of the most supportive. I stay mostly to myself really in my house and on porch. I used to be so active in the veteran community and i rarely even go on PGR and Legion missions now....The Legion asked if I could do rifle salute on Monday and I cried because I know I cannot. I do not even know if i want to go to the ceremonies because I cannot even stand there!!!
Thanks Tracy. I wish I could bemore estatic and jump up and down and say Im cured but thats not the case here. I was prepared for some stuff to deal with. With my health. Not the ill manored selfish behaivors of others.Rigt now Im glad to be stuck home. Its safe here. I never have to worry about being bothered. Leaves me plenty of room for my work. I wish I could get back to it.Im still not ready.Big hugs back to ya. Thanks for understanding.
TracyZ said:
Twana,
I am glad to call you friend. With as many health issues as we have, it's hard for people to know how to be around us & instead they stay away & it can be very hurtful. I lost a very close friend because I couldn't do things like I used to & had to cancel a lot. Please know everyone here understands.
Big Hugs,
Tracy Z.
Thanks Christy Ya I was doing that till after the decompresion. Wow when I first got home it felt like I was cured then BAM!!! It hit me. My body is sayng slow down my voice is telling me to shut up.So I guess Im supposed to watch and listen. This is all new to me LOL even though its not.Im starting to chill out a little. My surgin said it would go away. I sure hope so.The Dr told me to read tomyself. HA!HA!HA!HA! That only makes maters worse. Then it becomes a toung issue. I can't win with this one. I rember when life was less difficult Barely.Thanks for sharing. Im still very much a recluse. I dont see it getting any better People dont understand after the last 3 surgeries how I can still be sick. Well !! Lucky Me!!!Thanks for careing
Christy Mullen said:
I understand totally where you are coming from. There are afew i talk to on phone because they understand what is going on and are dealing with neuro issues to so have some speech problems, i've lost most of my friends except one from high school, she's one of the most supportive. I stay mostly to myself really in my house and on porch. I used to be so active in the veteran community and i rarely even go on PGR and Legion missions now....The Legion asked if I could do rifle salute on Monday and I cried because I know I cannot. I do not even know if i want to go to the ceremonies because I cannot even stand there!!!
In high school i was focused on not having friends i had a one track mind on leaving Iowa and joining Navy. I have alot of "friends" from high school on fb but most of them do not understand and we rarely talk if ever. There's 2 girls that was popular in high school who I think back then we said hi to each other in passing in the hall back then. A year ago she had a major heart attack, she was down 4 min before paramedics brought her back, now she has a pacemaker, on meds galour. The other girl just celebrated her 2 year anniversary of being cancer free after battling breast cancer stage 3 and going through reconstruction. My dad has had a kidney transplant and still is dealing with all of that crap. Then there's a Navy Chief who I served with in the Navy who now has Epilepsy. Those are the 4 people closest to me anymore, no matter what is going on I know how I sound, or what I look like I know I can depend on. My friend Heather (the one that had the heartattack) knows coffee, especially mocha, is calming to me, kindof like a comfort thing. She sent me a $50 gift cert to Starbucks with a note saying whenever I am down and feel alone to go to Starbucks to relax. We meet when we can in town to support each other and one huge reason why i decided to have the surgery here in my hometown cause they'll be there with me.
Because we're sick and alot of people do not understand, or have never been sick before really, they do not know what to say so they avoid. I've found during all of this you really find out who your real friends are.
I completely understand that feeling, I am starting to feel that way myself right now as well... My biggest problem is that it feels like people do not believe me. I look fine from the outside, but my head hurts so bad and I am starting to get so tired so fast. People just really do not understand and I think that is the most frustrating part for me right now. No one understands. My husband is trying his hardest to help me through all this, but he is a nurse and at times scares me more by talking about what might happen during this whole process. I am here for you Twana... not sure how much help I am at this point right now, just finding myself on this boat, but if we stick together I am sure we can help each other through this.
Wow! That was well spoken Poptart. I am finding that the people here are more intune with me than anywhere I can go. I was never one to reach out till I fond Facebook.Then the support group. It even hurts to talk.I also have a chewing problem the musseles on one side of my face arent working and food and stuff tryies to fall out the corner of my mouth.My face is changing sence the decompression on May 7th. The musseles are starting to relax and my lips look plumpier and not so pulled and pinched on the left side with a droop.It appears to be evening out.Im glad everyone is here to talk to I didnt even know I had this up to a year and a half ago.I had to bring it up. I also had to point blank ask do I have Adhiesive Arachnoiditis.I have been suffering for most of my life with these illnesses. And working through it.I hope I find a even platou of pain levels at least someting for a quality of some kind of life. And just start living it. I have been sooo afraid I'm gonna die.Im glad I know whats wrong with me.That helps alot
Poptart said:
What Christi said is do true...folks that have never been sick often do not understand but you find those few folks who are always there for you. Before we were sick, most of us had different lives to where we did not understand what it was like to be disabled. We have always been around those that were suffering from long term illness, blindness, deafness, immobility, and even poverty. So many people in society feel alienated because they just can not keep up with every one else. You have to learn to reach out to others to find people who do understand, and you have to open your eyes and realize that there are so many folks in this world that need a friend. You may not know anyone else in close proximity that has a Chiari but there will be someone out there who needs a friend. I did not really understand disability until I went through it myself. Although someone may be ill, that person still has the capacity to be a friend and brighten someone else's day. Sometimes we have to learn to alter what activities and social outlets that we have to fit with whatever physical capabilities or limitations that we currently possess. It is perfectly okay to stay home sometimes but everyone of us has so much to offer, and there are many folks out there who need us. Find new friends if you have to. One really good friend who does understand is better than an hundred who don't. Rethink what you can still do and what limitations that you have right now, and use whatever it is that you still can do to help anyone else that you can. You will find a friend that way, and it will be a very good friend. Good luck
mlubbers Thankyou for being there I went to town for the second time sence the decompression. Ill tell ya! I walked through the food part of Fred Myers and shopped with my hubby. Not pain free oh but what a joy. I was limping to the tracker but I made it. That was it I was done for the day. I just now got up but I feel good about going grocery shopping walking.But not much talking. (SMILE) . Thanks for careing.
mlubbers said:
I completely understand that feeling, I am starting to feel that way myself right now as well... My biggest problem is that it feels like people do not believe me. I look fine from the outside, but my head hurts so bad and I am starting to get so tired so fast. People just really do not understand and I think that is the most frustrating part for me right now. No one understands. My husband is trying his hardest to help me through all this, but he is a nurse and at times scares me more by talking about what might happen during this whole process. I am here for you Twana... not sure how much help I am at this point right now, just finding myself on this boat, but if we stick together I am sure we can help each other through this.
Ya! I Know My best friend is my husband He has been there for me. I think I can handel anything as long as he is by my side . It hurt when reality bit me of friends and famlie. Mine got really nasty .Mostly famlie members.Siblings and my daughter. Evryone else has passed on. Alot of people looking in . They all have their own set of problems. There is alot of Bi polorism and menal illnesses going on here. I come from a famlie o mental illness of some kind Growing up was hard. It got even hard when I got grown cause I have alot Im fighting. I only no I cant do it alone. Thanks for being there Christy.
Christy Mullen said:
In high school i was focused on not having friends i had a one track mind on leaving Iowa and joining Navy. I have alot of "friends" from high school on fb but most of them do not understand and we rarely talk if ever. There's 2 girls that was popular in high school who I think back then we said hi to each other in passing in the hall back then. A year ago she had a major heart attack, she was down 4 min before paramedics brought her back, now she has a pacemaker, on meds galour. The other girl just celebrated her 2 year anniversary of being cancer free after battling breast cancer stage 3 and going through reconstruction. My dad has had a kidney transplant and still is dealing with all of that crap. Then there's a Navy Chief who I served with in the Navy who now has Epilepsy. Those are the 4 people closest to me anymore, no matter what is going on I know how I sound, or what I look like I know I can depend on. My friend Heather (the one that had the heartattack) knows coffee, especially mocha, is calming to me, kindof like a comfort thing. She sent me a $50 gift cert to Starbucks with a note saying whenever I am down and feel alone to go to Starbucks to relax. We meet when we can in town to support each other and one huge reason why i decided to have the surgery here in my hometown cause they'll be there with me.
Because we're sick and alot of people do not understand, or have never been sick before really, they do not know what to say so they avoid. I've found during all of this you really find out who your real friends are.
I have also lost a lot of my friends, I think for me it's that I just prefer to be at home and not out and about. Chiari has made me a homebody I guess. It is just easier to be at home and alone with my kiddos and hubby who understand the most. I have had friends get mad at me for not wanting to go out...like I am avoiding them? I am not trying to, it is just much easier to be around my immediate family when I start feeling crappy or cannot find the words to describe something. My husband just laughs cause usually he knows what I mean and then he makes me laugh and he will give me the word that I am looking for because it is really frustrating that I cannot come up with them on my own. It's embarassing to me to lose my words when I am talking to someone or use the wrong word. I like mediated forms of communication (internet and text) because it allows me to find the words slower and make less of a fool of myself if I have time to think about it first. I hope things get a lil easier for you and all of us. Good luck!
Crystal
Always !!!!
Twana said:
Thanks Tracy. I wish I could bemore estatic and jump up and down and say Im cured but thats not the case here. I was prepared for some stuff to deal with. With my health. Not the ill manored selfish behaivors of others.Rigt now Im glad to be stuck home. Its safe here. I never have to worry about being bothered. Leaves me plenty of room for my work. I wish I could get back to it.Im still not ready.Big hugs back to ya. Thanks for understanding.
TracyZ said:Twana,
I am glad to call you friend. With as many health issues as we have, it's hard for people to know how to be around us & instead they stay away & it can be very hurtful. I lost a very close friend because I couldn't do things like I used to & had to cancel a lot. Please know everyone here understands.
Big Hugs,
Tracy Z.