Forum Replies Created

  • sarae

    Member
    July 12, 2022 at 2:16 pm in reply to: Stuck in Bed

    I’ve had Covid the last 2/3 weeks, so I’ve had a lot of fatigue. My mom’s freaking out because she has MD (FSHD) too, and knows what this means for us, but I’ve been able to move around, just not as much as normal and I’m not back to exercising yet. I try to make sure I don’t degenerate any faster than normal even when I’m sick, but it’s a balance where I’m trying to rest and recover too.

  • sarae

    Member
    April 15, 2022 at 3:03 pm in reply to: Staying Postive/Uplifting Yourself After a Fall

    I definitely understand how you feel – I get frustrated with myself and my MD when I fall or trip, and I let myself feel angry for a bit because I can’t snap out of it right away.

    I spend a lot of time when these things happen reminding myself that this is something in my life I can’t control, and that honestly helps mean a lot. I do try to focus on the things that I *can* control, like actively thinking about lifting my feet when I walk because that’s usually what makes me trip/fall.

  • sarae

    Member
    January 7, 2022 at 2:17 pm in reply to: Paring Back on the Holidays

    The same thing has happened over the years at my parents’ house because my mom just can’t do some things anymore, like decorating a tree, and my dad doesn’t care to do it. They have a prelit one that my mom loves, and they don’t decorate it anymore. They also don’t put out most of the other decor at this point. When I’m home, I do as much as I can for her, but I live 3k miles away and am not consistently home for Christmas anymore. I go all out for Christmas, but there are things my husband has to do for both putting things up and taking them down as well as getting things in and out of storage. I’ve told my mom in the future, they should just come stay with me for Christmas (I would pay for their flights), so she can get the enjoyment of all the decor without having to do any of it herself. I think she’s seriously considering it after this past Christmas.

  • sarae

    Member
    January 21, 2022 at 2:28 pm in reply to: Paring Back on the Holidays

    We both have FSHD. I know she likes to have some decor up, but she’s stubborn about asking people for help even though family/friends would help if she asked. When I’m at home for Christmas, I usually do a lot of it and ask my siblings (none of them have MD) to help me with the things I can’t do. She just hates asking for help.