Does anyone ever struggle with being infuriated about their chiari and symptoms? What about "woe is me"? I hate to even admit I have those moments, too.
My friends and family are really trying to be compassionate, helpful, and understanding, but sometimes I feel mad, detached, and even sorry for myself that they really don't understand....it is miserable to feel like this.
I am glad this forum is here.
there, I confessed what my evil twin struggles with.....
I do feel lame for talking about my weak moments...I know there are people who are feeling much, much worse than I do...so, if my struggles weak attitude at times is offensive, I am sorry. I just don't know who to say it out loud to, or if I even should.....
I mostly have a proactive attitude...it probably doesn't help that I feel really crappy today.
anyway, sorry about my whining
Yep, I get pretty pissed about it and unfortunately sometimes I take it out on my husband. He gets why, but I feel even more terrible afterward.
My sister's wedding was this weekend and I felt like such a schmuck - I was her maid of honor but I couldn't do ANYTHING for her. I had to sit through the ceremony instead of stand with her and the bridesmaids, wear different shoes, let someone else hold her bouquet, ring, lace and fluff her dress, be her gofer while prepping for the ceremony, plan her bachelorette party... It was infuriating to me, even though she said it didn't bother her. I even had to leave before they had their first dance, cut the cake, etc. I hate what Chiari has done to me. I've said it before - I would not wish this on my worst enemy. I've lost out on so many opportunities, memories, and moments. I think it's normal to be angry when something like this changes your life. All we can do is feel those feelings when they come up (instead of bottling them) and try to pick up the pieces afterward.
YES!! I get so mad sometimes. And my son and parents get the back blow from it. My parents know it's just the CM, but my son is only 3. So when I get to that point and yell at him over something small he did, that b/c of my pain or whatever symptom I am dealing with has made it out to me to be a big thing, I get even more pissed and depressed and just want to walk away for good. It kills me when I take it out on him b/c it isn't his fault. And it makes me feel like a horrible mother. But I go to my calm place and make it up to him as soon as I get myself together. That's all we can do. And I watch my friends go do the things we use to do together, that I can't anymore, and get pissed and depressed. It isn't fair what this condition has done to any of us! But that's what we are here for... To be each others vent, shoulder to cry on (figuratively speaking), help pick up the pieces people. B/c, like said before, unless you've been there you don't completely understand. And I am so thankful to have everyone here to do those things, that I can't allow myself to do with my friends and family. After all, we can only put so much on them b/c they care so much about us, that it tares them apart when they do know the truth about how we are feeling.