Just wondering if anyone else ever feels frustrated or down when people ask, "How are you feeling?" when you feel the response they want to hear is, "I feel great, thanks for asking." I've only been feeling REALLY poorly since December and it seems like my symptoms have taken over my life. I don't feel like my normal self and it seems like people want the "old me" back and can't seem to understand why I feel so badly when I look so normal on the outside. I'm tired of being asked about it as I feel like that's all that I have to say lately. My husband is the dearest man I've ever met and cares so deeply about me and my health. But it's even hard some days when he gets home from work and asks, "how are you feeling today" because if I say "fine" it seems to mean that I've had no issues during the day and everything's great. But I hate saying, "not great" because I love him and it seems that's all I ever say to him anymore. I want to be the wife I was before, not the one who is out of balance, weak, dizzy, restless, frustrated, and "boring". He's never said anything less than positive and caring to me, but I know it's frustrating to him as well. I have three young sons that are active and joyful and want me to be fun again. I feel like I just want to say in my house and avoid my friends and family because I just don't know what to say to anyone. So, so , so wanting my "normal" life back. Praying I can figure this out somehow.
I can relate, you took the “fine” and the “not great” right out of my own vocabulary! I think many of us lead parallel lives and we just don’t know it! I bet our husbands could say the same to each other too! I think it’s ok to feel frustrated, it’s not like we can just ignore the negative emotions that come up on a daily basis. I think the key for me is to feel the frustration and then try to balance it out with something to be grateful for. Sometimes this can be difficult but if I allow the negative too much space in my head I tend to feel worse with my symptoms. I just said a little prayer that you feel better and that you do get some resolution
When I read this, I had to do a double take because I swear you were reading my mind!! Right up until the husband and kids bit. (I’m only 18, in high school, lol) I wish every single day that people will stop asking me “Is your head better?” with expectant faces, as if I can turn this off if I just will it hard enough. I wish. Unless I’m at an 8-10 in pain, I just tell everyone I’m fine. No one outside of this group truly understands what it’s like to be in pain nearly every minute of every day, and I know a lot of my peers assume I’m just an attention seeker. And the pity! I can’t handle it when the adults around me look at me with such pity that I find myself comforting THEM. Seriously.
Oopsie, ranting! My bad. Lol, hang in there! Keep your head up! Or down, if that’s the most comfortable position for your neck (haha). I hope this gets better for you!
Thank you for your comments, ladies! For the most part I try and stay upbeat and busy with my kids and my responsibilities. Just have a hard time some days when people say, "Well, I haven't seen you fall over today so you must be feeling better, yes?". LOL! I know those who love me mean well and I do appreciate the concern. It's just hard when I know they want me to say I feel great and somehow everything will be fine again. I want it to be fine again! :-) I am tremendously blessed in my life with a wonderful husband and three amazing sons and I do see the blessing God has given me in each day. I'm just shocked how these symptoms seem to have turned on full blast in the past 4 months. Before Christmas I was struggling with a couple drop attacks, some lightheadedness and numbness in my right arm and leg. In December I was driving with my kids and felt like I had a stroke when I was behind the wheel. I pulled over and tried to collect myself. Finally got home and figured I could smile and raise my arms so I knew I was ok, just a bad headache in my upper neck and right side of my head. Just seems from that point on it's been such a rapid increase that I'm struggling to get the "old me" back. I have an appointment with an NS next Wednesday and I'm so hoping he can help me! i only have a 4mm herniation so I guess I'm not technically "Chiari", but I don't know how to fix what's going on. Thank you so much for all the support! SO glad to know there are more people out there that can relate!
Believe me I know how you feel! First I found out I had celiac disease and vitamin deficiencies, then I got mono and it never really went away, then my Chiari symptoms got worse! I had surgery so everyone thinks I'll be good now. Except I still have chronic mono and now I find out I have ankylosing spondylitis so I get flare ups of that!
I usually just tell people I'm fine even if I'm not because it's gotten to the point where I'm almost embarrassed to admit that something else is wrong with me. I have two friends I complain to when needed and my husband but everyone else gets the "I'm fine" most of the time. Sometimes I do tell them "I'm doing good for me" and joke that if I was a car I'd be eligible for the lemon law! lol
The people that need to know, know me well enough to know that EVERYDAY I have a baseline of symptoms. So an ok day or a good day is from the baseline stand point. The ones that care enough to ask I tell them how my day was from that baseline. I've come to accept that until the dr's can make any real suggestions that this is my new normal, albeit hopefully temporarily. I miss my old self so much some days but I cry and then move on to what I can fix - usually some aleve for the headache!
The ones who ask more questions when I say today was a good day, then I offer more incite. A Laugh when they say "Oh no headaches or nasuea?" and I respond with, "Those are there all the time, today they just didn't get worse. So today was a good day."
Saying a prayer for you.