Don't want to start this day off as a downer..BUT...LOL
This is my life with Chiari...decompressed 3 yrs ago...better now than before..Thank God...
However, I still have issues that I deal with daily and feel as though I should not say anything to the people around me ..(my family) because..I feel as though they are 'done' with it...I don't want to be a constant complainer and whiner....but there are days when I just want to lay down and not be bothered..and I don't mean this is b/c I am depressed..mainly b/c I feel as though my entire body and mind needs a break from life...
I try to be a cheerleader for those in my life that need encouragement...I take care of my mom who is elderly and is struggling with chronic pain and depression as well as a huge change in her life...we broke up her home 6 hrs away and she is now living 4 houses from me...I care for her on the days my sister is working and when needed...I love doing it...but there are days that mentally and physically I am spent.
Sorry for this long post..rant, vent ...thanks for reading...any thoughts and advice would be so great!!!
Thanks guys,
Love ,
Lori
PS: To all you NEW MEMBERS......WELCOME....Please join in on discussions and ADD your own...Looking forward to getting to you all..Our community has grown quickly!!!!!! HUGE WELCOME!!!
Good Morning Lori! Wow, that was a longgg post....giggles....really if thats long, Im in trouble, cuz I can rant and ramble soooo much more than that, hahaha.
It sounds like you have a lot on your plate! I am in awe, that you are able to do so much, no wonder you need a break some days! I know what you mean about not wanting to talk about it to family, and about the "done with it" feeling. I dont want to take over your post, lol so I will start a blog and explain why I can relate, cuz I can rant and rave wayyyy more than you, lol.This is still new to me, so the only advice I can give for now is laugh, keep humor in your life as much as possible, its almost impossible to hurt when you are laughing!
You are a constant cheerleader! You are an inspiration to me and I can say that if there is one thing I have learned from living with Chiari it is that you must listen to your body. If it says to rest, to be alone, then that is what you really have to do. I know it is hard for others to understand, but they are just going to have to trust you on that one. The only way you can continue to be a giver to everyone else, is to take the time you need for yourself when your body tells you it is time. Try not to feel guilty about that. I can so completely relate, I am a giver, a natural caretaker, but we have to take care of us as well. Hugs to you!
You are an inspiration, and I know you take care of others because you enjoy it. I have had to reaize that I do the same and feel discouraged, not wanting togive anymore, but then I think that I would lose a part ofme if I stopped being that person. Us givers keep the world going :0) keep your head up. I appriciate the cheerleading!
You are an amazing friend, sister, daughter, wife and mother! I admire you tremendously for all you do. It is hard to talk about things with our families after awhile. I think my family is so tired of hearing about Chiari and what it is doing to me. Just remember that we always have each other on this site to talk to when our family is unavailable to us or doesn't want to listen to us anymore! We all understand what you are going through. I thank God that you are here on this site for me to rant and vent with! You are one of the best, Lori, and I am so glad that you are in my life :)
You guys cannot imagine how much your replies mean to me....God Bless you all.....I Thank God each and every day for this site and the friends I have made here....you are the BEST!!!!!
You are not a downer. This is such a hard disorder. Even after decompression, I’m sure. I’m exhausted all the time. I try to push foward and keep on trucking but sometimes in the middle of a project, in the middle of the day I just want to say, “sorry guys, I’m going to go take a nap.” But I’m so afraid of what people will think. It IS HARD! It IS exhausting! Give your self some credit and some room to breath and maybe, after writing this out, I need to do the same thing!
I hope you’re having a better day today. Big hugs…
Wow! We live in parallel universes. I am in the process of boxing up stuff and trying to decide what to try to sell for my mother. She does not want to sell her house (90 min away) and is cognitively alert enough to choose not to. I had to tell her if she decides to rent I WILL NOT be a landlady and she will have to hire a property management company. I go to the
assisted living home she is now living in. I do not have siblings to help me in her care and to hire what it would take so I could work my two jobs was prohibitive. I go to her house each weekend to work there. Then with what time I have left in my week do my chores, run errands for her, and visit with her as she has no friends to speak of. She was never social and states she has no close friends. She is also one of the most negative people I know. Ready to tell me what is wrong with me and then shocked if I react because after all it is the truth, right? She is sucking the life out of me.
This is all new to me, but the biggest thing I have learned so far is to listen to your body. I have thought for years that I was just the laziest person around me. I always felt so tired. Now I understand why, and I am trying to deal with it better. I hope that your "rant" let off some steam for you and that you are feeling better now. You have been so nice to me since I joined here and I wish you the best!
You aren't alone, I just read this (I'm a few days late) and you've gotten this far with the help of God. I was just diagnosed, but I have faith that everything I'm going through is going to make me stronger, I was down yesterday and came across a quote, Out of our own vulnerabilities, will come our strength !
Being a caregiver even if part time is exhausting. It is wise to get down time. As women we are not always good at giving ourselves “permission” to do that.
You are always such a postiive influence on all of us and I hate to see that you are having to deal with so much. I know that makes the big girl pants droop a bit and it's easy to feel down about it. I have to work on that sometimes myself and I'm not dealing with the caretaker part. Feel free to vent...It's o.k. after all some of this stuff is tough; it's tiring and it gets old. We just kind of want it to go away so we can get on with our life and be normal (although I always say I'm not sure I know what that is). Add being a caretaker to that and I'm amazed you stay so positive. I've never had to do that but I witnessed others doing it and I know it is so hard to be a caretaker and take care of your own life and yourself too. It's important to take a break for yourself and take care of you......I hope something can be worked out so you can. It always relaxes me to take a long hot bath and read (TMI I know-LOL); I hope you can make time to take a break and do something that relaxes you and lets you forget all the problems for awhile. It is so important for your physical and mental health........I'm keeping you in my prayers, my friend.
Thanks so very much for your understand and support. You are so right about taking time out for me....I actually took up knitting again and I find it to be a great stress reliever....b/c my hands get pain, numbness and tingling..I can only do it for short periods of time...but that is ok...winter isn't here yet!!!LOL
