SMA News Forums Forums Our Community Adults ​With​ ​SMA Energy Levels and Returning to Normal

  • alyssa-silva

    Member
    April 17, 2021 at 9:53 am

    My stamina has dropped significantly over the last year which has been worrying me greatly. I typically lay on the couch most of the day, and when the pandemic first started, I made the mistake of not going in my wheelchair. Now I can’t sit up for more than 45 minutes within depleting all of my energy. It sucks. But a couple of months ago I could only sit up for 15 minutes, so I’m improving slowly but surely. I pray I’ll be able to regain my stamina but either way… I have a long road ahead.

    • brianna-albers

      Member
      April 21, 2021 at 3:29 pm

      I feel this so much. I wish I would’ve made a greater effort to “exercise” during quarantine! But hey, any amount of progress is good!

  • tammy

    Member
    May 1, 2021 at 1:18 pm

    Glad your energy level is coming back! Unfortunately I am stuck in my chair all day long from afternoon until about 11 p.m. at night when the caregivers come. So I’m used to being in my chair all day until night time. My lack of energy issue is more a problem with waking up LOL. I could sleep a solid 7 or 8 hours but when somebody comes in to wake me up I feel like I could sleep for another 8 hours. Hoping the medication will help with this! ????????

    • brianna-albers

      Member
      May 5, 2021 at 3:50 pm

      Omg this is so real! I need caffeine to wake up or I’m just dead to the world ????

  • tammy

    Member
    May 19, 2021 at 9:13 pm

    Definitely feel dead to the world when it’s time for me to get up. It is known by everyone not to make small talk with me when I’m just coming to in the morning LOL. I’m like don’t take it personally but please don’t talk to me for like an hour. I was hoping the risdiplam would help with this but so far it has not

    • adam

      Member
      May 23, 2021 at 8:20 am

      I’m the same. I’ve gotten rid of 2 support workers in the last 8mths because they couldn’t shut the *cough* up.

      Just put me in the sling, hose me down in the shower & pump me full of coffee. Then we can say “good morning”.

      I don’t think that is unreasonable; most people get up & shower before interacting with others.

  • tammy

    Member
    May 23, 2021 at 1:09 pm

    Yes! It’s like who the hell wants to make small talk when their eyes are barely even fully open? Luckily all of my caretakers are understanding of this as I gave them ample warning before they even started working here LOL. People don’t think what it’s like to have the shoe on the other foot. How would they feel if we were coming into their bedroom like a motormouth?

    • adam

      Member
      May 24, 2021 at 10:39 am

      Absolutely. Like I’m good for a chat, argue a point whatever but I’m at a distinct disadvantage having just woken up & you’re discussing something that happened while I slept. I realised these people aren’t interested in conversation, just like having their opinion heard.

      1 dude was awesome at his job but couldn’t stop with US politics. It’s mandatory to vote here & I don’t so imagine how interested I am in foreign politics.

      The other fella wasn’t interested in dialogue. Once tried to explain why he always drives 15km/h above the speed limit & how that basically makes him the smartest & safest driver. Mind numbing stuff. Also talked down about other clients & shared details he shouldn’t so if he’s saying it to me about others whats he saying about me to others?

Log in to reply.