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This topic has 12 replies, 6 voices, and was last updated 2 years, 1 month ago by Kevin Schaefer.

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    • #15865
      Ryan Berhar
      Keymaster

      Read Alyssa Silva’s column:

      Brain Fog, Fatigue, and Remembering to Rest

       

      I am sure we can all relate on some level. While I typically get enough sleep and have sufficient energy throughout the day, I get frustrated with the fact that I have to work like five times as hard to accomplish what an able-bodied person could do much more easily. While most people can just get up and go, for me everything is a process. What strategies do you have for fighting fatigue and stress?

    • #15869
      Michael Morale
      Keymaster

      That’s an excellent question Ryan. Fatigue comes in many shapes and sizes, and unfortunately, for those of us with SMA, fatigue can be something that is much more detrimental. I usually wake up very early in the mornings because I always had to be at work early. Now that I’m retired, I still get up early in the morning because my body is so used to it. Making sure that you’re getting enough protein in your diet and that your eating a well-balanced diet, along with getting enough sleep, can definitely help fight fatigue, but, fatigue will always be a part of our life.

      Those of us with SMA tend not to take too many things for granted because we know that it can be stripped away from us very easily. Every morning that I wake up and that I don’t have bugs and dirt on my face, I’m thankful for another day. While some of my days are weak, I’m finding that the majority of my days are pretty damn good. Keeping a positive attitude and keeping your head up during the difficult times will help because I find that when I feel good about myself in the situation that I’m in, it tends to help me get through another day.

    • #15870
      Kevin Schaefer
      Keymaster

      Great question Ryan, and I think Alyssa does a good job articulating what it’s like to experience fatigue and have SMA. Keep in mind that she’s on Spinraza, and still has trouble with feeling drained. Like Michael said, it’s always going to be something we have to deal with, but there are ways to make it more manageable.

      For me, I’ve found that keeping myself on a more regular schedule in the last year or so has helped tremendously. I loved college, but I was really just trying to manage a chaotic schedule and bite off more than I could chew. The lesson that took me the longest to learn was how to pace myself. I’d say it wasn’t until my senior year and beyond that I really started to figure this out.

      Today, while I do have a lot of work responsibilities on a daily basis, I have better time management skills. Once my caregiver gets me up and ready in the morning, I then grab a coke or something quick and get to work. I like to get checking emails and messages out of the way first, and from there determine what needs to be done the rest of the day. Also, depending on the day Michael and I may start the day with a conference call. I like these days a lot, as calls tend to motivate me more and they give me a chance to collaborate with coworkers and people outside BioNews.

      I then take some time to eat lunch, and I try not to respond to messages or check my phone during this time, unless it’s something really important. I like to take at least half an hour for lunch, and if I go out with my Mom or someone (I go to lunch with my Mom and grandparents once a week), it’ll go for an hour.

      Then I work for the rest of the afternoon. Some days are busier than others, but for the most part I can be done with everything by around 5:30, right around dinner time.

      Then in the evenings, I have several ways to unwind. I do a lot of creative writing, which to me isn’t really work. It’s one of my passions. I do that and read, and even when I’m a little tired these things help me combat fatigue. I also have regular hangout spots like my local comic shop, Barnes & Noble and movie theaters that I go to when I need to get out of the house.

      You’ll also notice that I leave little time for watching tv on most weeknights. I love film and tv, but I find that it helps me if I limit my time watching television during the week to an hour or two at night. I get more done this way, and I feel more relaxed and accomplished by the time I go to bed. I listen to music and podcasts while I work, but I find that I’m more stressed and fatigued if I watch too much tv. The only day I allow myself to watch anything in the morning is Friday, which is when new episodes of Titans air on the DC app lol. It’s a little reward I give to myself for making it through another week of work.

      Sorry for the long response, but I hope it helps answer your question. I still experience fatigue of course, and it does frustrate me when I can’t do something trivial because I’m depleted of energy. Yet by having a regular schedule like this that gives me plenty of time to get work done, I’m more motivated and I have peace of mind. I hope that helps.

    • #15891
      Ryan Berhar
      Keymaster

      You both make good points. Kevin, I myself have always strived to have as much of a regular schedule as possible. I don’t like spontaneity. The thing is it’s very difficult for me to do achieve this. I mean, I go back and forth between my parents’ house and my grandparents’ house every day/night. Because of this, I have to do things like get up and go to bed at different times. Various people take care of me, and I don’t always know what their schedules are like or what their priorities for the day are. My life  basically revolves around everyone else’s schedule. I don’t have much freedom in the way of forming my own.

      • #15906
        Kevin Schaefer
        Keymaster

        Sure, I know you are a routine guy.

        As far as your care situation, I wonder if you could find some part-time caregivers to help you a couple nights a week or something. Forget going through an agency for a sec and all of the hassles there. I’m talking about paying for a few hours of care a week out of pocket. There are always nursing students and other people looking for CNA/PCA work. You don’t necessarily have to go through an agency. If you had a few hours a week, you stay in one house most of the time. Me, DeAnn, Brianna and a bunch of others here have caregivers.

        • #15924
          Ryan Berhar
          Keymaster

          After our talk this morning, I actually had a chance to chat with my grandma about it, and she’s on board. What I plan to do next is call a meeting with my grandma, mom, and dad to attempt to get them on board as well. Hopefully they’re receptive to it, but I think getting my grandma on board is a huge step in the right direction.

        • #15942
          Kevin Schaefer
          Keymaster

          That’s great! Keep me posted and let me know if there’s anything I can do. Like I said, the anxiety that you and your parents are experiencing about hiring caregivers is totally normal. It’s daunting at first, but I think the sooner you start the process, the better off you all will be.

    • #15892
      Halsey Blocher
      Participant

      Fatigue can indeed be so very frustrating! I’ve found that it can help to let other people  help me with some of the smaller things that I can actually do myself, like moving my arms, or lifting things off the table. But when I ask others to help with some of these things, it allows me to save some of that strength and energy for things that are more important things like eating, art, activities outside of home, and, this time of year, gift wrapping. It would be ideal to do everything that I can on my own, but I’d rather conserve energy for what is most important to me.

      • #15905
        Kevin Schaefer
        Keymaster

        That’s a great point Halsey. I agree that it is important to conserve energy for the things you really want to do. For me, my JACO robotic arm helps me tremendously with things like eating and drinking, and as such I have more physical energy for things like writing and working.

      • #15925
        Ryan Berhar
        Keymaster

        That’s an interesting point. I definitely try to do everything I can myself, just because everyone does so much for me already. I get your point, though.

    • #15907
      Adnan Hafizovic
      Participant

      We must take care that we must have enough rest that we can function during the day,our main job is fight with SMA.

    • #15917
      Kelly Miller
      Participant

      I’ve found that as I get older, I struggle with fatigue more often and in different ways. I used to work full-time for Social Security, getting up at 5:30 every weekday and going to bed at 10 every evening. That was when I was in my 30s & 40s. It seems once I hit 50s, my degree of fatigue every day seems much higher. I look back on those long days in my chair, and I wonder how I ever did it! I stopped working when I was 44 because I ended up getting a pressure sore that required surgery. My doctor told me I needed to stop sitting up so much, so I made the decision to quit working. My manager even offered me part time but that would be 32 hours, not much of a decrease. I knew with overtime and everything, I would end up working 40 anyway. I wouldn’t be able to turn down the extra money! Once I retired on disability at that age, I realized how really hard I was pushing myself to do so much during the days. It was slowly killing me, and I don’t mean just with the pressure sore. Now, my life is made up of getting up at 10:30, so I can stay up in my chair later in the evening without repercussions, and working on the computer all day. I help my husband with a devotional he writes and sends out by proofreading his work. I also keep up with a lot of blogs and websites that are my favorites. And, I read a lot. Definitely not being in the chair all those hours has made me not so tired each day.

      I also found that having the nutrients I need and the amounts I need makes a huge difference. It only took about a week after receiving my feeding tube in 2017 to notice the difference in my energy levels. Apparently I wasn’t getting enough food or vitamins from eating food. Then, about 4 months ago, I changed from a premade formula to Real Food Blends, puréed real food that is made from a company that only uses whole ingredients. This was a huge difference also. I noticed I’m better able to concentrate and to stay with tasks longer since switching. I also started taking a multivitamin about 6 months ago as well. Both of these things, the vitamins & the food, keep my energy level up and make me feel more enthusiastic about doing things. Unfortunately, I don’t think we realize how much SMA takes a toll on our bodies as we try to keep up with the regular world around us. I think it’s more important for us to really have the right diet and nutrients than it is for your average person without SMA.

    • #15935
      Adnan Hafizovic
      Participant

      Kelly you are good example how we don’t too much care about our condition when we were young,and when we get older we start to have some health problems.We  do not understand how much sitting can exterminate a man.

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