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  • Do you thrive with routine?

    Posted by deann-r on June 1, 2024 at 8:52 am

    Do you thrive with routines?  

    Throughout the years I’ve learned my body prefers consistency. Maybe that’s why I’m such a routine person. Therefore, when things like holidays and van breakdowns throw a wrench into my schedule it can be tough. I try to go with the flow but it’s wearing me down.  

    Any advice on how to handle disrupted routines?

    susana-m replied 1 month ago 3 Members · 6 Replies
  • 6 Replies
  • alyssa-silva

    June 9, 2024 at 11:01 am

    Yes! I absolutely need routine in my life. Establishing routines helps train caregivers to learn more quickly. Routines also give me a semblance of control. Because SMA is so unpredictable at times, I need some things in my life that feel consistent.

    That said, if my routines are disrupted, it does feel frustrating. But I have to remind myself that if it’s out of my control, there’s nothing I can do. Despite wanting routine and consistency, SMA has also taught me to go with the flow over the years.

    • deann-r

      June 14, 2024 at 10:45 am

      I never thought of that, but routine does help when training newbies. Sometimes things become so routine I actually have to think about it for a minute before walking someone through it. Is there ever part of your routine that’s difficult to articulate?

      • alyssa-silva

        June 14, 2024 at 4:56 pm

        I wouldn’t say there’s anything difficult about the routines themselves. It’s more so that there’s difficulty in articulating how to get me comfortable or how to get me dressed without hurting me… things like that. What about you?

  • susana-m

    June 13, 2024 at 6:38 pm

    Consistency and routine are very helpful in terms of managing my day. From the outside, it can look like OCD but the reality is that it translates to having some control in my life. Agency.

    But life is not that easily organized, curveballs and wrenches galore.

    When that happens, I go to my micro routines. Transportation went sideways? Problem solve as best as I can then take a few minutes and meditate.

    Or do a brief breathing exercise.

    Or take a walk.

    Ask someone to make tea.

    Being resilient is not a one and done thing, it’s a skill that has to be practiced and exercised.

    • deann-r

      June 14, 2024 at 10:36 am

      Resilience! Love it. As you said, it takes practice. I try to remind myself it’s not the end of the world when things happen. What type of things disrupt your routine the most?

  • susana-m

    June 14, 2024 at 6:03 pm

    Finding a comfortable position is a mission, fraction of an inch makes all the difference in the world.

    The biggest disruption in my routine is when my help changes. Our current help will be moving in the next few months, and I am dreading it: losing someone that I have built a relationship with, teaching someone new, feeling vulnerable when changing clothes and showering, finding someone who cares.

    Yeah, that’s the biggest disruption.

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