Trying to stay positive but really just feeling quite depressed & sorry for myself today. Most of this year has been a struggle with the Chiari symptoms. I feel like all of my independence has been taken away little by little. I got progressively worse very quickly before surgery. Then the big day of surgery on June 28th. I thought it would be the answer to all my problems & that I would quickly bounce back. WRONG. I was starting to feel better at 2 weeks. No more pressure in my head. No more speech issues or twitches. Then I got a CSF leak. Now I am afraid to do anything because I don't want it to get worse & have to go back under the knife. I am so tired because I have to sleep sitting up and have been doing so for almost a week now. What that means is that I might get an hour or two sleep here & there when I am so exhausted I have no other choice. I started feeling dizzy last night - for the 1st time since before surgery. That was one of my biggest CM issues I was hoping the surgery would fix. I feel useless at home because I am not supposed to be straining or lifting at all. My 8 year old son is doing laundry & dishes because mommy can't. My poor husband is running around like a chicken with his head cut off trying to work full time, be both mommy & daddy, and take care of me. Even trying to find transportation to doc appt is a challenge because we live 25 miles away from town & I can't drive yet. Ok I think I am done venting now. I am not looking for sympathy. I am just hoping that putting my frustrations into words will help me deal with it a bit. Hoping everyone is having a good day.
I’m so sorry to read this.
I’m sure you have mommy guilt right now. In our minds it’s our job to take care of our kids and family. We’re supposed to be strong. We’re supposed to ba able to handle anything. And when we can’t (or at least I’m speaking for myself right now) we feel like we’re failing as a mom and wife. Even though that’s not the reality of it.
On top of it all add the stress/pain of chiari.
I really don’t know what to say, and I’m sure there isn’t anything I can say, to make you feel better right now. Just know that you’re allowed to have days like this. And we all have them. It doesn’t make us any less strong, any less of a mom or any less of a wife.
Your situation sounds familiar, except our daughter had slurring, numbness and bad headaches with her pseudo. What finally helped her was meds to address the fluid causing pressure in her head. The meds took away the headaches, nausea and dizziness. So far, she has been feeling much better and the fluid is no longer able to be seen or felt at her incision site. She still sleeps on the wedge pillow to keep her head elevated at night. The last three months have been stressful, to say the least, but we had to be patient and allow her to heal. Hopefully her leak is sealed now, as we hope yours will be very soon! It does get better! Take care, JoAnne
I feel ya! I hate being the one in charge to be the one being taken care of...hang in there....it will get better!
Becki, know that you are not alone. I am not so much talking about us, but God. He sees and hears all. I can defintely emphazize with how you feel along with everybody else. I keep my head up by praying, reading God's word, and sharing it with others. I know prayer does not take it away immediately, but it does give you this sense of peace along with reading the Bible. Encouraging others really helps me get my mind off of things even if it is just for a moment, it makes all the difference. Sounds like you have an awesome husband, he is a keeper LOl. I am sure he loves you and understands; that is why he is so willing to help out as much as he can. Just continue to remind and show him that you love him and appericate him along with your children as well. Don't get discouraged, keep your head up. Joy comes in the morning, just Trust and Believe in God and make the best out of the situation at hand. It might not be His will to deliver you right now, but that doesn't mean he wants you depressed. I will pray your strength and your family also. Be Blessed.