• Yes. Since my ms limits my contact with others, when I do go out I try to say complementary things to random people. You can usually can tell what complements people would like to hear: a cashier who obviously spent a lot of money on her nails I’d say, wow your nails are gorgeous, or somebody who dresses well I’d say your outfit is so on point. T…[Read more]

  • My daughter asked me this question and I told her if I had one day free from ms I would go ice skating and then dancing. Not that I was ever very good at either, but I think I would fly around with reckless abandon, and skate away from all these people in my life who’s lack of confidence in my abilities has left me more timid and cautious than I…[Read more]

  • Well, like most everyone here the main issue is fatigue. You can’t do anything if you can’t get out of bed. I don’t shower on a bad ms day, no confidence that I won’t injure myself. I’ve had ms for twenty five years, you would think my husband would get it. To him, the way I do things is the trouble. If I would only do things his way I would be…[Read more]

  • I tolerate Ocrevus quite well, I don’t seem to be having side effects.

  • Cynthia King posted an update 1 year ago

    Take a look at your medicine regimen. Switching the times when I took my morning meds helped. One needs the empty stomach, the others with food. Check with the doctor and make sure there aren’t two meds you shouldn’t take at the same time. That helped a lot.

    • Hi Cynthia,

      You posted your suggestion as an “update,” rather than replying to a specific topic. Which comment are you responding to?

  • Yes. I have a hyper startle reflex. My kids would laugh at surprising me because my reaction was so extreme.

  • Cynthia King posted a new activity comment 1 year ago

    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.

  • Cynthia King posted a new activity comment 1 year ago

    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…[Read more]

  • Cynthia King posted a new activity comment 1 year ago

    Thanks. Sounds like you graduated from MS university, too. Some lessons are harder to learn than others, but taking care of yourself is number one. Maybe I avoided taking care of myself by focusing on everyone else. I have never just dumped my feelings out in one fell swoop like these posts. So thanks. I feel better already.

  • Cynthia King posted a new activity comment 1 year ago

    Yeah, I used to be proud that I was a tough cookie, that I was the go-to girl if you wanted results. I just wish it didn’t make me so hard. I wish I was a mother whose loving arms you could come to and rest your head, and I would pat your shoulder and say there, there, it will be alright. But I was afraid things would go soft if I did. I was…[Read more]

  • Cynthia King posted an update 1 year ago

    well, you can’t re-write history, can you? The past thirty years just went by so quickly, a lot of my behavior was just reactionary. Things came up, I would try to involve my husband, it was just whoever blinked first. He would do everything he could to delay and obfuscate any issue. I did blink first. I had to. He threw every road block he could…[Read more]

    • Sounds like you’ve become a tough chicken, Cynthia. I hope all goes well for you. We’re always here if you have MS things you want to talk about.

      Ed

      • Yeah, I used to be proud that I was a tough cookie, that I was the go-to girl if you wanted results. I just wish it didn’t make me so hard. I wish I was a mother whose loving arms you could come to and rest your head, and I would pat your shoulder and say there, there, it will be alright. But I was afraid things would go soft if I did. I was…[Read more]

    • I know how life happens and reacting to each issue is all you have time to do sometimes. I really hope he listens when you share your feelings and realizes the stress this can put on your MS! Good luck to you, Cynthia! Keep us posted .🙂

      • Cynthia…
        …If there is one thing I have now learnt in all my 67 years…and believe you me, I have learnt this the hard way…is to ” look after number one, as who else is going to do it…”

        …It is time to look after YOU…

        Jackie…

        • Thanks. Sounds like you graduated from MS university, too. Some lessons are harder to learn than others, but taking care of yourself is number one. Maybe I avoided taking care of myself by focusing on everyone else. I have never just dumped my feelings out in one fell swoop like these posts. So thanks. I feel better already.

  • Cynthia King posted an update 1 year 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…[Read more]

    • 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…[Read more]

      • 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…[Read more]

    • 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…[Read more]

      • 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.

  • I would say getting a pet helps the most. Because of my dog I have to get up and periodically tend to her needs. This means I don’t sit around all day. I have to feed her and let her out. Minor things, I know. It also helps that she likes to snuggle, so she gives love too. She is also very grateful so a small task for her, like filling her water…[Read more]

    • I agree, Cynthia! Pets and their unconditional love are amazing! It sounds like you have a dog and cat? What kind of dog? What are your pets names?

  • Spasticity hands down. I am lucky to have left what I have left after 25 years, but spasticity. I get Botox in my feet/ lower legs and the helps so much for walking, it’s hard to walk if your feet won’t lie flat on the ground. It’s in my back and I feel like there are invisible magnets pulling me backward, and my spine is all messedup because the…[Read more]

  • I have had my first split dose, and two regular ones with no side effects. I wondered if it truly was working, this past spring I seemed to have taken a turn for the worse, there was a decrease in muscle strength and such. But I worked with a physical therapist and feel like I have regained what I lost. Tysabri was my favorite of them all, it…[Read more]

  • Cynthia King's profile was updated 1 year, 1 month ago

  • Cynthia King became a registered member 1 year, 1 month ago

    • Hi Cynthia! Welcome to the MS forums! Please feel free to ask Ed or I any questions you may have! Thank-you for joining in our discussions!
      Debi

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