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    • #26523
      Brianna Albers
      Keymaster

      Are any of you concerned about regaining stamina post-COVID? I know we’re not out of the woods yet, but I’m worried that I’ve been home for she long that I’ll really struggle with becoming active again.

    • #26539
      Alyssa Silva
      Keymaster

      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.

      • #26587
        Brianna Albers
        Keymaster

        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!

    • #26662
      Tammy
      Participant

      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! 🤞🏻

      • #26695
        Brianna Albers
        Keymaster

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

    • #26844
      Tammy
      Participant

      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

      • #26882
        Adam
        Participant

        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.

    • #26888
      Tammy
      Participant

      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?

      • #26890
        Adam
        Participant

        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?

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