• Cynthia King posted an update 4 years, 1 month ago

    The article about emotions and continuum of ms reminded of myself. For the first 20 years, it was guilt. The feeling that I dropped the ball. I allowed my husband to get away with stuff I should have called him on, but I wasn’t the partner I vowed to be so if getting a horse and riding it gave him pleasure, who was I to deny him that? Never mind what it did to the family finances. When my younger daughter wanted to go to London for a semester, once again, it involved money and I helped because of the guilt I felt. When my older kid graduated and got her job, she couldn’t afford student loans and a car payment, so I gave her my car. I wasn’t driving anymore, so what difference did it make? But all I did was let people walk all over me. I let them, because of the guilt I had for bringing ms into our family. Now that everyone is established, I find the whole guilt thing has eased. It was replaced by sadness, I finally gave myself time to accept the person I am now, regardless of the of forces that made me that way. So gradually I’ve turned to anger. I’m mad nobody recognized what lengths I went to so they could get to where they are today. I’m mad that kid I helped go to London can’t make the effort to call me. Am I that bad that she would rather call her father (who in high school had him labeled as ‘Satan’ in her phone) than me? Well, at least she calls. And I’m mad that the kid who drives my car can’t be bothered to stop by for more than five minutes, coming to see me is never her destination, I’m just a pit stop on her way to somewhere else. I live in a ranch, I have been talking about putting in a stair lift so I can get to the laundry and at least find some clean underwear for a few months now. Well, I found one cheap on Craigslist and the guy came over and installed it. My husband busted a nut and was furious. Her said it would be in his way when he had to do laundry. He also said ‘well if you can have that I’m getting a motorcycle!’ When he wanted to get one after he got rid of his horse I asked him not to. We could not manage if he got hurt. He agreeded then, but now it’s off the table. I told him he he had to have a motorcycle to get one, and if ever got hurt he would be going to a nursing home and he would never see me again. I guess he’s ok with that. Thanks for letting me vent. I created a world where everyone could get by without me and I guess that’s what I got.

    • Hi Cynthia,

      I’m so sorry to read what you’ve been through. I know that you’re not alone because I’ve read similar stories from others. Unfortunately, it’s not something that’s unique to people with MS. There are a lot of selfish people in the world and, in too many cases, they’re right in our own families.

      I could suggest that you confront your husband and children with your feelings but I know that’s much easier said than done. Maybe you’ve already started doing what needs to be done…you’re starting to get by on your own, as evidenced by your buying the stair lift that you need.

      Have you looked into any support groups in your area? I’m assuming that travel is difficult for you but some of these groups have people who will chat on the phone or stop by every so often.

      I’m not a social worker so my suggestions don’t come as a professional. I hope some others will chime in with their thoughts.


      • I have been to support groups early on, trying to get a grip what having ms really means, and they were helpful. I would really hate to show up all bitter and negative, because that’s not how I feel. I feel like I have painted myself into a corner. But, with my stair lift, I get to choose which corner. And I do need to be honest with everyone. Say my peace and move on, and let other people be reactionary. I just need to remember it’s not about how they respond. It’s about me.

    • Hi Cynthia, I to am sorry for what you have been going through. I know it is easy to feel helpless, alone and forgotten (even in your own family) due to disability. But, I have found a lot of times what I am feeling or thinking about myself is not what others are thinking at all. It sounds like your family needs to know how their actions are making you feel and the stress it places on you. Which is definitely not good for your MS! Ed’s suggestion to express your feelings with your family is great advice. Communication is the key.
      Please keep us up to date on your situation and know that we are here to talk to!

      • Yes, I probably don’t give them enough credit. Most people are more concerned about you think about them anyway. I just feel I’m analog in a digital world. But things come around again. They always do. Thanks for your understanding.

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