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

  • By Nikki C.

    I try to explain my life to someone who hasn’t ever been around a sick person/ or a person with MS.

    Every day I have to force myself to get up. Then I have to force myself to take shower and get ready for the day. Does anyone out there understand that every day I have to force myself to do thing. Its a fight every day, and if I have plans with someone its a bigger fight. Because my body says no don’t go, but my head says even though she told you if your hurting you don’t have to go. But if I don’t go, I let her down and myself down. Then if I do go I let the pain & MS win. So please understand this is a fight I have to do every day and if I can’t get out of the bed or do whatever I had planned to do, I let the pain & MS win.
    I’m tired of fighting myself to do anything. Its a battle I have every day. And I tell myself if I don’t do it or whatever I was supposed to do I don’t, it wins, and I just hurt people or myself.
    I’m tired of fighting and saying “I’m sorry” cause I can’t do that or this.
    Are you tired of fighting or saying you are sorry?
    I’m 98% of the time I fighting to do this or that! The other 2% I let the pain/MS win. So please understand if we have plans and I’m hurting and you “tell me I don’t have too” your basically letting me choose the pain/MS, I’m not going to let it control my life. So every day I fight myself, I don’t want to ever stop fighting myself, because that’s when I let the pain/MS win!!! I then its the ‘ I’m sorry I cant’ . so please understand if we have plans, I fight myself to come because I CHOOSE to come.

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  • By Sarah

    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.

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  • By Candy

    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

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  • By Mspbfh2

    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.

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  • By Nikki C.

    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.

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  • By PamsaRN

    WoW, this sounds like a day in my life. I have 3 children ages 25,22,and 9. I was fortunate that I was able to “win” most battles with my MS until about 6 yrs ago. I was able to participate in life and fight through the pain, spasms, numbness, bladder problems,weakness and flu like symptoms from beta-interferons. The last 6 yrs have been difficult and I can see that my disease is progressing. I’m 47 and worked in cardic critical care for 8 yrs until I became disabled. I deal with so much guilt because my husband gets the grocerys,washes clothes, and picks up dinner most nights. I feel worthless. I’m in a flare now and honestly I’m scared. See mind of matter works until…..it just doesn’t anymore. For some reason the last 12 months have been the worst so far…..We went to Disney and I used a scooter ….I won that battle….but, my stomach was so upset before hand because I was scared I would ruin vacation due to fatigue. I know right now I’m in a dark spot due to current flare up I think I am scared that I won’t recover. It’s so good to know I’m not the only one who has these feelings. Thanks for talking about living a “maybe” life and how you cope day in and out.

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  • By Tash1217

    After 19years of this lovely MS crap I have been through it all! I’m 40 and FINALLY I try not to apologize. As my sister and I say…We are 2 the only two kids my parents had and it sucks because I got dealt the MS card. I didn’t do anything to cause it yet I am constantly apologizing! People ask what’s the worst symptom of MS. GUILT!

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    • By Cathy1959

      Try Low Dose Naltrexone. It is a wonder drug. It has to be compounded because it comes in 50 mg pills, but it helps people with MS in small doses: starting at 3mg and moving up to 4.5mg Since you are a nurse PamsaRN, have you ever heard of it?

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  • By Catgirl66

    Nikki, I would print out what you wrote & let the people you feel you’re letting down read it. Once they know where you are coming from they might have ideas of ways you can socialize WITHOUT suffering for it. Cathy

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  • By Cathy

    I too feel like you are telling my story here in what you are up against. I also had a thought this morning that I fight this damn disease every every day and that having more to fight with just doesn’t seem “doable” for me. I agree with Catgirl66 to print it out and let others know…I have done this on many occasions and it does help “short-term” and then I do it all over again. Best of luck and success to us all on this Wild Ride Journey we are on…Cathy

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  • By Cathy1959

    I have a wedding in two weeks. It’s my daughter’s husband’s sister. My daughter just called me today to tell me she found out that I’m not sitting at her table with her and her husband, my two sons and their girlfriends. Instead my husband and I were put with people our own age, who we don’t even know! Really annoying, and I don’t want to say anything because I don’t want my daughter to feel uncomfortable with her in-laws. I need to be with my family. The ones who know when I need help to the bathroom, or other things. Anyway, I’m just going to not let it stress me out. I will sit at the table I was assigned to eat only, and the rest of the time I will sit on my walker over at my kid’s table. I will look great, as usual, and no one will know all the effort it took just to get to this wedding, and that I have an “emergency bag” with me at all times, with an extra dress, a bunch of pull up diapers, and poise pads. That’s the thing that stinks about this disease. Our problems are invisible.

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