Chiari Online Support Group

I feel so old

#1

I am only 39, I keep reminding myself of that. My body and brain say I am 90. I am striving to be better. I want to do what my other 30 and 40 something friends do. Instead, I am on the sofa today, the two days before that I was stuck in my bed.

A friend wanted to have a benefit for me this past weekend, almost no one showed up. We did raise a little money, and I am not complaining at all because every dime helps but I was quite disappointed that people who told me they would be there did not show up. I felt so alone although I was surrounded by people.

I have been so private in discussing my "brain" with anyone, especially my mother. I have not said a word at to her. She is the frantic type of mom and she has her own medical issues that put me in the position of parent quite often. She has been randomly sending me messages at odd times that I really just want to ignore but I don't, I answer her to make her feel like she is helping. For instance, she recently messaged me and woke me up at 130am. She wanted to tell me that I should take my crock pot with me when I go to the clinic and load it up so that when I come in at the end of the day my dinner will be done and it will help save money. I was thinking... you woke me for this?

She messaged me another time asking what I was paying for a hotel room, then proceeds to tell me it is too much and I need to talk to the hospital for a discounted rate. I had to explain to her that WAS the discounted rate. She doesn't understand that in the heart of major cities that hotel rates are really expensive. Even a motel 6 is expensive in some places. Then she goes on about shuttles and do they have free breakfast. I finally just had to tell her that she knows I am a over planner and its all been extensively investigated, weighed and decisions have been made. Then she goes into wanting to know about my husbands vacation time. She didnt understand some of how the process works and then she got upset thinking he may not be able to be with me for the duration. While it is true he only has one week of paid leave left, he does have backups if needed. Co-Workers of his have offered up some of their weeks.

When you are already stressed out over your medical issues the added stress of your mom can sure make you want to blow a top. If I was able to drink I sure would have had one, but anything with alcohol seems to make me hurt worse these days which is crazy because I used to could keep up with the best of them while out on the town. So I degress.

She is a hover mom and unfortunately she also suffers from some medical issues that cause her to not act appropriate at times, her reasoning is not normal at all. So I know this may be very wrong, but I really am not sure about letting her really know what is going on or not. I know she will want to be there and she very well may stress my husband and I both. So what would you do? I know its wrong to undergo a serious operation if that is what we end up doing and to not tell your mom, however sometimes it is best to keep some things close to your vest. So I am VERY torn.

I am so stressed out, and I am in so much pain. Today is one of those days where you want to just cut off your head, your shoulder and your arm and be done with them. The pressure is so intense. I am not sure if that is stress or if rain is on its way. I am stressed over the money for this trip, how are we going to afford multiple trips, hotel rooms, food etc. I know we always find a way but that still does not help my feeling much right now.

My husband works away from home all week, sure I have a live in helper who works for us and takes care of all my needs, however, I am not feeling so great about him working away from home in the event that surgery is done. That means he would be with me for a bit under paid vacation, then he would be gone from me during the week leaving me in the care of others. I have always been tough and strong and ok with him working away from home, but right now, under these circumstances, I am not liking it one bit. I do know that if he were able to work locally for a period he would be exhausted because he would work all day then come home to me and not sleep. We had a period of time like that when I had to have my breast tissue removed a couple of years back. He just wore himself out.

I just have so many worries right now, and I may not even need to be decompressed, but I know the possibility, especially considering my symptoms and how long I have had them that the possibility of surgery is very high. And I worry about the silly crap. Like I need some medical assist devices to make things easier. I need some special pillows. Do I cut my hair short or not? Can I still have my pets in bed with me while I recover or would they may cause an infection to set in or hurt me in some way? By the way, I have a 100 pound potbelly pig that thinks she is a human little girl and I have a parrot who just mean as sin. The parrot does ok when put to bed, but the pig is big and she is a big ole baby who needs her mommy a LOT. So I worry about her, being away from her, being able to come back home and return to normal with her. She is totally the love of my life. I know, I know, I shouldn't worry about so much. But I do have OCD and I just think about every detail of everything and I plan things out better than AAA itinerary service. Yes I am a list maker! I make lists for everything .

I am going to go take a really hot shower and try to relax. I am exhausted and in a lot of pain and just needed to vent.

GOODNIGHT

#2

Hi there travelerbroken, thank you for sharing how you're feeling. We all need to be able to let it out and I hope you have got some rest now. Something I have found helpful is Mindfulness, it helps you learn simple techniques to stay in the moment when everything threatens to overwhelm you. Check out www.franticworld.com for some simple guided meditations that are just a few minutes long. Kindest, Jules

#3

I think you should tell your mom what's going on, but insist you and your hubby need to do this WITHOUT HER. The added stress isn't good for you at all but you can't hide brain surgery (or can you??) :)

I have to smile at your questions! Like the dog in the bed and the parrot...because I have the same. My pit bull sleeps with us every night and I love on my Caique parrot all day every day! They're not silly at all....sometimes it's our animals that can give us the most comfort. I rehab wildlife and wonder how long I have to heal before I can have them back in my house!!! You're not alone in your love with your fur/feather babies.

#4

Thank You Jules, I have the site bookmarked and will delve into this weekend when things chill out here where I can concentrate. Weekends are hectic for me. The hubby is in and the live in helper takes that time to go see her boyfriend and try to have a normal life outside of the 4 walls of this house.

Katrina,

I love that you do animal rehab and rescue. I have a non profit and I offer several services for potbelly pigs and for other animals upon request but my focus is on the pigs mainly. I raise funds and help with a group of people helping relocate the pigs, get them spay or neutered, we raise money to help sanctuaries get medical supplies, vet visits, surgeries, as well as supplies they need like warm blankets, loads of hay, food, maintenance medications, things like that. It is very rewarding.

My parrot is a rescue, he came to me a couple of years ago at the tender age of only 11 and I am his 4th home. Everyone claims he is too bad. He is a scarlett macaw, you have to learn their temperament. I refuse to give up on him even though I have scars from his attacks and have suffered a broken nose from him freaking out on me. But I still love him unconditionally no matter what.

I often rehab animals as well. I currently do not have any I am fostering, a lot of people know I am not well right now so they do not want to put that on me. And I am ok with it as long as I know that someone is rehabbing them and taking good care of them until they are well enough and trained better habits so they can go on to their forever home.