I use to be dependable…My family, friends, and employer always knew they could count on me. I hate that this has been taken away from me. I think this is what I struggle most, since Chiari became a part of my life. The pain and other symptoms hurt ME…this hurts EVERYONE around me. My sister and I have our issues, but I have always been there when she needed me. She is almost 8 months pregnant and she had to be admitted for the next 24 hours to be monitored. It especially sucks because tomorrow is her Birthday. Well…she wanted me to watch her kids tomorrow, so her husband can stay in the hospital with her. I physically can’t do it right now! It’s hard enough normally for me, but I had to work a lot more than normal this week and I’m paying for it now. I’m exhausted and in horrible pain:( I should be able to do this for her, but it’s just not possible. I guess I need to work on accepting this. Thank you for listening to me vent.
It's an awful feeling, I know. Especially when people don't get it. I am terrible about pushing and pushing myself trying to do what I used to be able to do that I think I should be able to still do (even though I know better) and then paying for it for days/weeks. It's a process to get to a place (and I'm not there yet) where you can except the limitations and know that you've done all you can and STOP there. Don't push beyond that. All you can do is all you can do. Be content with that. Easier said than done. I know. Still working on it. I get frustrated that I cannot get over to see my family more. It's a 2 1/2 hour drive that used to be no big deal, but is very arduous now. Frustrating when my kids want to see there grandparents and cousins, frustrating when my little nephews are asking from my and the kids, BUT I can only do what I can do and enjoy the times I can make it. Enjoy the times you can and let the rest go. Don't feel so bad. Your family loves you:-)
I can relate to your feelings comepletely......yet WE ALL HERE have to keep in mind that we have a condition...a serious and painful one...
I oft times wonder if the people around us would think and act differnently if we had another...more common serious condition? Would they ask you to babysit...or whatever ?
Guilt has overcome MANY times...don't let it do the same to you...it only hurt you....hard to get over the gulit..that I know. That is why it is good you posted this so you can get a reality check.....you are not letting anyone down but yourself..because of this Chiari crap!!!!
I am so sorry you sister has to go into the hospital....Is there anyone else she can ask to help out with the kids???
Thank you for your responses! It helps talking to people who understand how I feel. I have a really hard time saying “NO” to the people I care about…I need to work on this. I probably shouldn’t have worked the extra days last week, but my boss has been really understanding and they really needed me. I actually cried on my way home from work on Saturday…partly, because I was exhausted and in pain and partly, because I was proud of myself for making it through the week. I also missed my best friend’s Birthday celebration last week. She had it in the city (Portland, OR) at the comedy club. I’ve been there before, so I knew it would involve walking and standing in line for a long time. I can’t stand for more than about 10 minutes, so this was out of the question. She was VERY understanding:) She said that she knew I probably wouldn’t be able to make it, but she wanted me to know that I was invited and that she wanted me there. On the other hand, my sister is upset with me for not being able to do this for her. My mom actually stood up for me…she doesn’t normally do that. Maybe, she’s finally starting to get how serious this is? Lori, There isn’t really anyone else my sister can ask. She can be very selfish, so she has never had any long term friendships. So…her husband is going to come home and get the kids ready in the morning, then I’m going to watch the youngest for an hour or two until my mom is able to come home from work to help. I’m a little worried because the last time I was supposed to watch them for a couple hours, it turned into eight! Wish me luck tomorrow! Thanks again for making me feel a little better:)
Crystal, you are not alone. Last year I hit a wall, this is when I found out I had Chiari, Vit b12 and D defiencies. Before that I was always on the go. I work full-time, have 4 daughters and volunteer. I could do nothing last year that I would normally do. I finally had surgery in Sept. I am getting back to normal now. It has made me realize that I don't have to to everything and it is not bad to actually slow down. I don't volunteer as much and my daughters have stepped up in helping with the house. My husband and I have a better relationship now than we have ever had in the 22 years we have been married.
I did find out what family members are truely there to help. My mom didn't even come out when I had surgery. My sisters that I have always dropped things to help didn't come around.
Hang in there and do what you can.
I'm not sure if you have had surgery but I can tell you it was a life changer for me.
Thank you for your response:) I have not had surgery yet, so your story gives me a lot of hope. Thanks for reminding me of the light at the end of the tunnel:)
Abby,
Thank you:) You are right…my family definitely needs to learn more about Chiari. My sister hates to read and has never read an entire book in her life. So…she is exceptionally hard to get through to. I posted some educational Youtube videos on my Facebook page to help raise awareness and I know she watched at least one of them. It helped a little…but, she still gets frustrated when I can’t do something. The plan for today changed and I only have to stay with Bella during her nap and my mom is supposed to be home from work before she wakes up. That I can handle! I talked to my sister on the phone and she was much more understanding. She even thanked me for doing what I can to help.
Susan,
Thank you for your response:) It helps talking to people who understand what I’m feeling. That is why this site is so great…we can share our good days and bad days with each other. It sounds like you have an amazing family! I am glad that they have been there for you:) Its still hard though…even if they don’t make you feel bad, you are still hard on yourself for needing the help. You just have to remember…If roles were reversed, you would be there for them and they know that:)
I feel the same way today. I actually lost a friend today, because they said they couldn't count on me. My heart is broke , but I am so tired of having to defend myself. I have had a really hard time in the past 6 weeks , since I had the abalations. We both need to forgive ourselves for not being able to be everything for everyone like we used too. I just wish everyone I know would read our posts just for a week and I think they would be shocked. Hopefully tomorrow will be better.
I have a running prayer list, Your name will be added to it... :)
Thank you so much…I really appreciate that:) I am so sorry to hear that about your friend:( I would be heart broken too, but if she’s like that then she wasn’t a real friend. I’ve definitely learned who my real friends are while going through this. You’re right…we both need to forgive ourselves. We didn’t choose this and it’s not our fault we can’t do what we use to. I’ve also had nerve ablation done, but in my lower back. It was supposed to help my herniated discs, but it just caused more pain. So, I really feel for you.
Katie,
Thank you for having my back:) Before Chiari, many of us were the rock or strong one in our families. Maybe, we were born strong for a reason. But, this also makes it an even bigger adjustment for our families. They are so use to us handling everything for everyone. So, they definitely need to learn to accept the new us and step up like we always have. You have been through so much and I have great respect for your strength. Thank you again!
Hi Crystal. I've know how you're feeling. You're not letting anyone down. I know it feels that way, but you're in no condition right now to help in the way you ordinarly would have. I'm faced with this situation often. I want so much to sit for my new nephew and I can't. I can barely hold him for long. It kills my heart, but I know that I wouldn't be any good to him. I try my best to be there for everyone is my own way. I know for a fact that certain loved ones have nothing to do with me anymore because I'm not able to do the physical things that they're used to me doing. Instead of being proud of me and the accomplishments I've made so far, they make me feel inferior. Crystal, you're hurting right now and don't worry so much about letting people down. Acceptance to your limitations is a feat in itself. I battle this every day. Once you can find acceptance, the rest falls in place. It's okay honey, we understand your feelings. :)
Crystal you are so not alone in this feeling. Just yesterday I was bawling because after over doing it, I wasn't even able to make dinner for my family. Thankfully, my husband was off, but if he hadn't been around, the kids would have had cereal for dinner. It seems like everyday there's something I have to limit or someone I have to tell no to and that was certainly not me a few months ago. I am very lucky to have a family that doesn't hold any of it against me. I have lost a few friends that I thought were close, but apparently, we weren't. This is definitely a diagnosis where the entire family is affected one way or the other. I just hope your family comes to realize you need as much support as they can give you! Hang in there sweetie!!!!
Thank you so much for your kind words:) It means a lot:) I’m working on accepting my new limitations, but as you know…it’s hard. Somedays, I cope better than others. One of the things that gets to me most is that I use to take care of my 80 year old Grandma and I can’t anymore. I’m sadly not doing any better than she is. For years, I made sure she had her groceries, her mail picked up, and her garbage was taken out. I also spent a lot of time just visiting. I’m frustrated because none of my family is picking up the slack. Granted my sister is 8 months pregnant, but that wasn’t always the case. My out of state Aunt called my mom to critisize me, but my mom told her that I was awaiting brain surgery and that got her off my back. I just wish one of them would help her like I use to. Sorry for ranting again:( I’m sorry about you not being able to watch your nephew:( It is heartbreaking. My little niece is always wanting me to pick her up and it breaks my heart everytime I have to say no. We will work on coping and accepting this together.
Kelly,
Thank you so much for your kind words:) I can relate to your story. When I told my sister that I couldn’t watch the kids, one of the reasons was I wasn’t able to prepare them meals. I ended up only watching them for about an hour and I only had to come up with a snack. So…I gave the oldest a spoonfull of peanut butter (her request), which is about all I can handle. The little one was happy with a banana. The sad thing was that I was still exhausted after only one hour. We can only do what we can do…right? Thank you again for your understanding:) We’ll all learn to cope and adjust to our limitations together.
Your post brought tears to my eyes:( I am so sorry that you are going through such a hard time. You have been through enough and deserve a break! Your son knows you love him:) Is your mom helping you with him?
Aw Katie, I am so sorry. I can relate to not being able to pick up the kids. My 5 yr old (the baby) is so used to me picking her up, she automatically hops up on me and I have to explain we can’t do that anymore. It breaks my heart too.
Crystal, i’ll be on my own with my 2 older kids tomorrow. After the last 2 days being in extreme pain, I’ve declared tomorrow soup day. I think that’s all I can manage. They think its fun for now lol. We definitely need to start learning our limits and sticking to them!!
I am so glad that your mom has been there for you and your son:) She sounds like an amazing woman…must be where you got it from:)
Kell,
Good luck with the kids tomorrow! It sounds like they have a good attitude…that’s awesome:) I agree that we need to learn and stick to our limits…easier said than done. I admit that I do things I shouldn’t. I will work on that.