Tired of saying I'm sorry, or I can't do that...

I know where you are coming from Nikki. I fight all the time, mainly because I do not want to hurt someone else. Nobody else can understand having to force yourself to do something, even when you really want to just stay in bed or the pain is unbearable, unless you have lived this life. People constantly see how "you look fine" and do not know how you really feel on the inside. That is just one more part of the fight. I constantly feel like I have to sugarcoat everything, or just pretend like I am perfectly fine, even when I could cry because the pain is so bad. I tend to be the one to push myself too far in fighting, that I end up in bed making up for it. But once again, I hate to see another person let down or upset. Even with a disease like this, I still put everyone else first. Two weeks ago, I went 3 days with IV treatment, then left a day later to go out of town for my stepson's hockey tournament. I was not about to stay home, even as bad as I felt. We drove to Detroit, which is 9 hours from my house. I gradually kept getting worse, but I was determined that I was not going to let anything get me down. By the second day, I was so worn out and in pain, I ended up spending the majority of the day in the hotel room bed. I had to miss one of his games, which broke my heart. That was my breaking point. I was upset that I was letting him down, and I was upset that something was keeping me from doing what I wanted to do. By that night, even as bad as I felt and that I couldn't even take a shower without help, I was determined to go to his next game. I ended up seeing the rest of the games that weekend, but am still fighting this last flare up.

Nikki and Sarah I just want to say I understand so well what you're going through. We have 5 adult children now, but 17 years ago when I was diagnosed I was the one telling them " I'm sorry Baby!! " If they only knew how much I meant it!! Today our youngest daughter is 22 and there are times I look in her eyes and feel such guilt to this day. Some of the worst times now are when everyone's together. I just want to crawl under a rock because they'll start telling stories and I'm missing from so many of them. Then I go back to the " I'm so sorry I wasn't there for you kids the way I should've been!! " So I step into the rest room and tell myself " Happy Thanksgiving " or whatever the occasion may be. I wish I could say the " I'm sorry's " go away, but they never have for me. Maybe, I hope, you both will find a better way of dealing with what's not in your control. Seems funny how I know it's nothing I ever had control of, yet all pain and guilt of what I couldn't do
is also mine to carry? Sarah I also agree with you, my favorite comment from others is " But you look so beautiful! " One day I will tell someone to spend a day in my "beautiful" life!!
I do have a BEAUTIFUL life! I've chosen to live the best, loving, fulfilling and fun life I can when I'm able. The "good MS days" I use to the most I can, the "bad MS days" are for reading, catching up on shows. I even surprised my husband by booking us on 3 day cruise! As you well know making a plan in advance isn't advised for us. We're only going to live once so let's do it!! I wish you both the very best. I also hope I've done this alright since I never have been on a blog before! Lol

OMG, I know exactly what you are saying!! Just the other day I had to tell my son I,couldn't commit to watching my grandkids instead of them going to day care. My son and his wife are really struggling financially and not having to,pay for day care would help tremendously. My husband, who generally gets it, suggested that I offer to watch the kids one or two days a week, but I can't! The kids are three and 6 months...what if the baby needs to be picked up, and I'm having a bad day, and am not even sure I can walk safely?? What if I NEED a nap, can't tell the three year old, don't get into trouble, Danma néeds to sleep. I HATE it. I want to,do it, I love my grandkids and really enjoy them, but it just isn't smart. Makes me cry just thinking about it. Of course, part of this is my fault, because I haven't been letting people see how much I'm struggling, just say I'm fine...I'm just so tired of having to fight.

Thank you Cindy. What you wrote I can so agree with you. My oldest talks about all the things I used to do with him and my youngest gets mad because I don't do the same with him. So then there goes the fights. Just so hard. Some days. And when they look at you and say you look fine but never really understand. You might look one way but really feel another.