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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.


  • This topic has 5 replies, 4 voices, and was last updated 12 months ago by Kevin Schaefer.

    • Author
      Posts
      • #16639
        Kevin Schaefer
        Keymaster

        Since starting full-time at BioNews Services (the company that publishes SMA News Today) in 2017, I’ve acquired a lot of responsibilities and more day-to-day duties. I like it, and I trained myself in college to have the skills and capabilities to work full-time. Still, it can be exhausting if I’m not careful. I have to take care of things like my mental and physical health, and to ensure that I have enough energy throughout the week.

        This week’s been particularly busy, and I worked some long hours on Monday and Tuesday. I feel pretty tired, but I’m still setting aside time for myself. I spent Wednesday night reading comics and watching Netflix, and I went out with a friend last night. I also take Saturdays off, and usually hang out at the comic shop then. It’s really important to have that balance, especially when we have SMA and are more susceptible to fatigue.

        What strategies do you have for avoiding fatigue and burnout? I know I’ve brought up this topic before, but it’s an important one.

      • #16664
        Ryan Berhar
        Keymaster

        Ironically, I sort of just referenced this on the chores topic, but if anything, I fall on the other end of the spectrum. The battle for me isn’t avoiding burnout, it’s finding the motivation to work harder than I do. If anything, I need to be pushed harder, not throttled back. I don’t want to come accross as lazy. I mean, I do get my work done, and I’m happy with what I’ve accomplished with regard to my work. But I’m just never going to be the guy who works himself to death. I’m simply not as driven as some others are.

      • #16667
        DeAnn R
        Keymaster

        As with anything balance is key.  I might be the opposite of Ryan, I’ve always loved keeping busy.  As I’ve gotten older it has become easier just to chill and do nothing, but even then my brain is thinking about what’s next.  Sounds like you’ve found a good balance between “have to’s” and “want to’s.” If you can mix in things that you want to do with what you have to do it can be less tiring.  Sometimes deadlines interfere with the balance, but you can only do the best you can.

        • #16674
          Kevin Schaefer
          Keymaster

          Yeah I can totally relate. I’ve gotten better, but especially in high school and college I had a tendency to bite off more than I could chew. I prefer being busy over having nothing to do, but I also have gotten better at taking days off and not pushing myself too hard.

      • #16677
        Kelly Miller
        Participant

        I had a very hard time when I was working to keep that balance. There was so much work to do, and we never caught up, that I often worked overtime on weekdays (1-2 hours) and on Sat. mornings (7 to 12). This usually gave me anywhere from 55 to 57 hours a week. I was exhausted by Sunday after having to grocery shop and do household things Sat. afternoons. At 1st, I could do it, but as I grew older, my stamina decreased. I ended up getting a pressure sore that required surgery and a 5 week stay in the hospital. That’s when I had to retire. My manager offered me 32 hours as part-time, but I knew myself and knew I would still work the extra hours in the evenings & weekends. I decided after 17 years that I needed to be nicer to my body if I was going to continue enjoying life. It was a difficult decision but one that was necessary. After a grieving process (I really missed my job and felt like I was no longer contributing to society), I started finding more fun things to do. I’ve now been retired for 12 years, and there’s no way I would go back to my job! I love retirement, and I love doing what I want to do with my time. I guess I learned the hard way, but at least I learned before it was too late. 🤭

        • #16681
          Kevin Schaefer
          Keymaster

          Thanks for sharing Kelly. Yeah, in college it took me a while to realize when I was overcommitting myself. My junior year I had a full courseload, was Features Editor of the school paper, and involved in a student Christian organization. Part of me really didn’t want to step down from the editorial staff of the paper my senior year, but I knew it was necessary for my sanity and my grades haha. I did much better in school when I made that decision, and I felt better physically and mentally.

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