No one understands!

I have been home from surgery less than 3 weeks...its been challenging being home alone...its been tough actually, i can't bend over because i lose my balance etc..those who has CM surgery knows all the do's and don'ts of it...i still get weird h/a out of nowhere and they affect my eyes more that anything right now..and he biggest thing, I can't stand loud noises...the banging of pots, the tv too loud, the constant grandchild asking for attention from her parents which they ignore gets to me...the "mommy" or "daddy" repeated 4 or 5 times while standing next to them and them not responding is like a drum banging in my head...and yes, i made the mistake of lifting my head from my pillow and asking "if someone please acknowledge the baby" turned into a fiasco...i was verbally attacked by my son telling me that he's tired of putting up with me in this fashion, listening to me complain and that they weren't ignoring the child but busy doing his yelling entered my head like a ton of brick...oh, they live with me....i stood up from my bed and got dressed, took my meds and drove to a friend and she let me go to bed for 4 hrs of peace...i then drove back home and haven't spoken to him since although he thinks nothing of it but a "sorry" here and there.

I'm almost tired of people not understanding that we are not wanting to be sick because of the comfort of not having to work for 8 income doesn't help my situation either but no one understands i the only person dealing with issues like this because of my health issues...

i'm sorry to dump but I am so discouraged today and my h/a are starting again due to the pressure my body is holding back.

Dear Marye,

I am so sorry about what you are going through...can you ask your son to educate himself about may help him 'get it'.

You need a HUGE HUG...I am sending it your way...cyber-style!!!!!

I am worried about the driving.....that could cause you more harm than good in the long run.....please see if one of your friends can pick you up and get you away from the house instead of you driving..just my opinion...I would hate to see you get in an accident.

Love you,


Marye....I'm so glad you have a friend who understands. Sometimes it's difficult to know why people respond the way they do. I know it must feel awful to think that no one understands what you are going through. I don't have small children around so I didn't have to deal with that issue....I'm sure that makes it harder. As a grandmom, it's hard for me when I think my grandchildren aren't being cared for as I would do it. But, I had to let that go and let them be responsible for their own children; everybody does thing differently and my daughter's way is not always the way I would do it. When my grandchildren were little, I bought more "unused" hats and gloves for them than I can count. But young people just don't seem to cover up the babies like my generation did. We grandparents do oftentimes have more time than their parents and we can respond quicker and maybe do things a little different. Little children are very resilient and, unless they are being abused, they tend to be o.k. So maybe if would be easier on you if you could let go of that and concentrate on you - at least for the time you need to let your body heal. With Chiari, since we don't look sick, I think it's easier for those around us not to understand that we really are "sick" and they sometimes respond accordingly. I don't know how much your family knows about Clhiari but sometimes education about Chiari and how it affects the individiual's life, I think, is the key. My husband is much more understanding of my limitations since he learned more about it. If your family doesn't do computers, I have a really good Chiari Handbook that I can copy and send to you if you like.....Perhaps that might help. Also, sometimes people who care about us get frustrated when they can't "fix" the problem and children , no matter how old they are, don't always deal well with "their" caretaker being sick. I know they can sometimes really hurt your feelings. It's also hard to be the caretaker of someone who is sick. You sometimes feel helpless to make them feel better. You're dealing with a lot and that makes it easy to take things personally....I hope you won't; you need all the energy you have to concentrate on getting well. One important thing that I have learned over the years is that I can't change others because I little or no control over how they act or feel. The only thing I can change is my reaction to them. Sometimes that IS hard. You are dealing wih a lot and that makes it harder and overwhelming I'm hope is that you will heal quickly and that the headaches will go away.

I understand about the noise thing; loud noises started being magnified for me when I had a stent put in my head for an aneurysm, so don't know if the chiari surgery has anything to do with it or not, It did improve for me over time. Getting well from this surgery is a process; it takes time I didn't try to bend over until about eight weeks after my surgery; I was still dizzy from some of the pain medication I was taking, so didn't want to risk it; so hopefully you have someone to help so that you don't have to do any bending. When I went off the pain medication, the dizziness I was feeling went away......while I really wanted it to happen right away, it took about five months for me to actually wake up and feel well.. We all respond differently to surgery and recovery, so I'm keeping you in my prayers that it will happen quickly for you.




I am sorry you are going thru this. I wish there was something we could do for you. I guess just letting you know that you are not alone in this. We've all been thru similar situations. It is very hard for our families to understand when we look perfectly fine. You should not be driving when you are just 3 weeks post-op! Could your friend come to your house or come pick you up and take you to her house? Try not to get to upset emotionally because the stress of it will make things worse for you during your recovery. You can go to and print off some materials for families that explains exactly what chiari is and what you are going thru.

We love you here and offer you very gentle hugs!!



I am so sorry you are going through this with your family. Hang in there!

Many Blessings!



Hope you are feeling better...hang in there and know you are not alone...we are all here for you!




How are you feeling today? Are things any better with your son? No more driving? I am concerned about you and want you to know that we are all here for you to support you and surround you, even if it is virtually!



Thanks for my Chiari Family...its been a struggle...i've been up and down...its been rough...

I am not used to be home not working means no of course, i have opted to go back to work and

work as much as i can bear it and come home....

I know most of you are clenching your teeth at my decision but you have to do what you have to family depends on my income and thus stress is put on all of us because of this.

The good news is that tomorrow i am seeing the pain mgmt (the doc that took care of me for over a year in pain meds)to finally weane me off the morphine...that scares me and i hope he gives me some withdrawals medication for it...did anyone have this situation happen to them....

thanks again friends and i'll be on and off.....i'll update you 2morrow on my pain mgmt doctors decision.

Hi Marye:

Oh, how I worry about you going back to work too soon..but I totally get it about the much needed income. Is your employer understanding? will you be able to leave work early if need be???

Glad you are seeing the pain doc tomorrow..I was on a lot of meds before and after surgery...Don't will do just fine..the dr. will taper you off slowly from your meds...

HANG IN THERE...We are here for you!