Chiari Online Support Group

Watching everyone else live a normal life


#1

Some days it doesn’t seem to bother me as much, like I’ve done a good job of accepting my new reality.
Then other days I’m just watching the world happen right around me. And not just the world but people I’m close to, or were close to. My people. My family. Maybe it’s just me but I’ve become so accustomed to lying about how I feel or how I’m doing. Because when I tell the truth no one understands, or my "inabilities " are used against me, or I can tell they just think I’m over exaggerating. I’m always accused of being dramatic. I literally have no one I feel I can trust. My mothers boyfriend told me I am a burden and a failure while my 5 year old son stood at his feet. And I am now being persecuted because I absolutely refuse to be subjected to that man. There just becomes a point where you don’t feel like you can even fake a smile anymore.


#2

I’m sorry, Cassie, what you are going through is very difficult. It’s also the experience of so many people with rare diseases and oddball conditions. Nobody “gets” it. But … and it’s a big but … you have people here who have experienced what you are going through. It’s a great feeling, isn’t it, posting your thoughts in a place where people “get it”. Because here, they do.

Join in our conversations, and share with your fellow chiarians, and you will discover what a great, empathetic group they are.

A warm welcome to you!

Seenie from Moderator Support

PS, you say you are in “Grafton”. This is an international group. Where is that?


#3

I feel bad saying it but yes, it does feel good to know there is a community that can understand. But there is a part of me that wishes all of you were like everyone else and dismissed me/thought I was crazy/ was convinced I must be mentally defective. I don’t want anyone else to know the physical, mental, spiritual pain this brings.
It’s stolen my life.
I guess maybe I just need to know I’m not alone. Because I feel like others are able to hold a job, keep friends, relationships with family, Do things other than sit in a dark room with a pillow over their head (& I feel like that’s me on a pretty good day)
I see a therapist weekly. I’m taking every medication (mental and otherwise) they prescribe, I am a compliant patient.
Any suggestions, any. From anyone.
I’m running out of steam to fake the smile. I live in a very small town that I grew up in. I don’t want any stigma about a sick mother attached to my son. I’m his only parent, his father was in the war and came back unwell. Now it’s just us.
I need to find a way, for so long my son was that driving force. Maybe I’m just not a good enough mom anymore? My brain hurts which is just part of all this but I’m afraid it’s my heart that is beginning to die.


#4

Hi, Cassie! I know how it is when your health problems are not taken seriously to the point you start to believe you’re just not right in the head. Well, we Chiarians actuall aren’t right in the head, but just in a different, physical meaning. Having a rare condition or disease is something very, very different from being lazy or selfish. People around us choose to believe the things that are most convinient for them personally. You can’t let those inconsiderate opinions dictate who you are and what you do. From what I see in the things you wrote, you are a really cariing mom. A caring parent is just the thing any child needs. :slight_smile:
I know living with a chronic illness is exhausting. I sometimes feel like one day I will eventually run out of energy to battle every obsticle I encounter.
The best weapon I’ve found is the truth. Don’t be afraid of it and don’t hide it from people around you. You don’t have to be the “sick” mom. You can instead be the “strong mom who tought her son compassion and sincerity”, among other values.
I was lucky enough that people finally realized how bad my health was, when a NS said, I need brain surgery asap. I hope there is someone in your life who realizes what you are going through, if not, I hope you meet that person soon.

Hugs,
Kristine.


#5

Hey Cassie,

You are Amazing already!! I know this because you are single handedly raising one of the next generation of fine young men:) and I’m saying that because that’s what get me out of bed in the morning. My three boys. I think even though we have Chiari, are boys still look at us with just the same amount of love as any other mother to son if not more. I am also a firm believer that it takes a tough women to raise some great gentleman for the future of this world. This chiari is a battle of a lifetime. You gotta dig your cowgirl heals in and push back. Lol that was code for “I live in a small town too.” Bhaaaa. good luck and let me know if you need anything.


#6

Three boys!!! I’ve got to hand it to you girl- how do you do it?! Really? I have one 5 year old and wow. It’s as exhausting as it is rewarding. Where do you dig from in your soul to make it through if you don’t mind me asking? Is it a certain saying, counseling, religion, endless coffee?? Have you grown up in the small town/area you’re in now? Do people know about your chiari?
I have struggled a lot, as I am learning we all have. But really truly and I mean this with every fiber of my being I would continue to take the debilitating pain, confusion, weird body sensations, hearing loss, optic nerve damage, and life altering headaches/ pressure inside my freaking head if there was just a way I could be a good mom. Back to the mom I was. I so terribly want to join the FSO (my sons schools version of the PTA) so I can be involved. In our small town our schools are falling apart, I could go on and on. These things not only effect my child’s education but every child in our district. If I had my old brain I could do it. I know I could help with something.
It is so unfair because not only can I not help at school but I can’t sign up for small events. What if I’m having a bad brain day? A bad pain day? My life has been stolen but the part that pisses me off- that makes me so angry is that my son only gets one childhood. There are no re-dos


#7

I think that is really great advice “the best weapon s the truth”. For myself, as I think for so so many of us we basically are big fat liars when it comes down to it. We don’t want to inconvienvce anyone with the truth, make them feel bad, or put them in an awkward position. Sometimes it’s simpley that we are tired of saying the same truth over and over again.
I think for myself in the beginning it was that if I said I was doing better, I felt alright, I could handle it on my own that eventually I could.
It just never was a thought that one day I would get sick, my body would give up and there would be no medical avenues to freedom. Band aids, yes. But no cure.
This just wasn’t my life plan at 30. So I suppose there is a bit of shame in there too. Probably why just telling the truth- such a simple concept- hasn’t been first on my list.
I truly appreciate your insight. Thank you. <3


#8

Why thank you for the complement. Having my boys is very rewarding. My saying is “show no weakness or they will eat you alive.” But in all actuality my husband and boys see my bad days and are understanding. I must say they are men so not all the time but they help a lot. I do volunteer and have in the past been a cub scout leader even. Even if I am having a really bad day these are the things I do to help me get through things I volunteer for. I take ibuprofen 800mg to reduce any swelling, I have plastic bag in my jeep in case I get sick, I walk to the event or get a ride if I know I can’t drive at the time. I never plan anything for more than 4 hours. Cause I have a 4 hour FAKE IT LIMIT Bhaaaa. And most importantly, before I ever, ever even think about canceling I look at my boys and think of how sad it will make them. That they are only going to be young once and only have me as a good example setter for a mommy. Now, I will be honest, if I’m bad I will cancel or ask them if I can stay home. I most always get positive feedback. A lot of people in my town that know me know what I have been thru. I always get the "aww that’s awful. " and “wow, that sucks.” Along with the Look. (You know what look) However, I know they just don’t know how to handle it. And I am blessed with my boys and hubby. I have gotten real close to God since my Diagnosis. He is my main squeeze. I also always keep my sense of humor, even when going through the crappiest moments. Like I told my mom that “the doctor said I was too smart and my brain was too big. So they have to go in and make more room.” Bhaaaa. This is how I told her I had to have brain surgery. Or that God made me so special he gave me two Ribbons. Lol one for chiari and one for a syrinx. Keep Faith and Laugh often. No one can take this away from you.


#9

Its nice to know that I’m not alone in feeling the way I do… everything you’re saying tired of looking around seeing people live their live normally afraid that your heart’s going to die I’m right there with you I don’t know if this depression or loneliness but I understand how you feel you’re not alone


#10

I’m so sorry I have not replied to this and been on here forever. I took a turn for the worse with life and my condition. My husband decided after I quit my career to file for disability that he no longer wanted to be married to a handicap wife. THEN my RSD/CRSD spread down to my rt leg. And is now the whole rt side of my body. I had a breaking point in my life and had a nervous breakdown. I admitted myself to a hospital for a week for mental treatment. Since then I have grown a lot. I have come to realize that I needed to take care of myself mentally and physically in order to be the best Mama I could for my boys. I am now seeing a counselor about all the pain, the looks, the physical challenges of just fighting the exhaustion. Girl, it is helping tremendously. I guess you really don’t realize how much it can help until you have someone to listen and give advice. Really turning my life around for the better and away from a 12 year verbally abusive relationship that I didn’t realize how bad it was. Broke as a joke but with all this help and God by my side. My future is getting where I want it to be. Baby steps and understanding my limits. Not limiting myself just making different decisions. I truly hope all is well with you dear. Let me know if you need to vent or talk. Sorry it’s been a while. But I’m back where I need to be.