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    • #11579
      Brittany Foster
      Keymaster

      Over this past weekend I missed an important family event. I missed the wedding for my cousin that I have been looking forward to for quite some time. It was so heartbreaking for me to have to miss this due to my health. The wedding isn’t the first thing that I had to miss because of having a difficult time managing symptoms or because of an acute illness.

      This left me questioning , how do I judge when to go to an event or when to miss it? This question is a hard one to answer, but I feel as though there are warning signs from my body that I can’t ignore that tell me I should stay home and rest.

      How can we deal with the fear of missing out but also make sure to practice self care and take care of our bodies when they need extra TLC? What are some signs your body gives you that alert you to stay home instead of going out? What events have you had to miss because of your health?

    • #11586
      Beverly Repouille
      Participant

      This is something I think about often.

      As far as how do I know I need to provide self-care? I usually find myself MORE tired than usual or my O2 percentage is in the lower to mid 80’s. Sometimes it’s just a little voice in the back of my head telling me to stay home.

      What HAVE I missed because of my health? I miss many family dinners out if I have already been out that particular day. I’m lucky to handle one outing a day, let alone two or more. There are many day trips or weekend trips with girlfriends that I would love to take but must now forgo because I don’t have the energy. (I wish I’d listened to myself when I decided to take a road trip with a girlfriend from Nebraska to Maine to Virginia and back to Nebraska. I wound up in the ER in Virginia for overnight observation because I overdid it!)

      As for dealing with the fear – I’m still working on that. I try to keep events or activities to one a day or every two days as that gives me a day to recover in between. If I can, I try to have my family down to my house to eat and we order in so I don’t have to cook. I think my biggest fear is being isolated. I really dislike the fact that my family seems to think they need to stay home if I don’t feel like going out. I mean appreciate the company, but I don’t want them NOT go out to stay home with me. I am isolated enough without feeling the rest of my family is, too.

      Good luck on this one. It’s probably tougher than most of the others! HUGS!

      • #11588
        Brittany Foster
        Keymaster

        Beverly,
        I really appreciate you sharing this. I also can relate to your fear of feeling isolated. As much as I dont want others to miss out on things and will tell them “go and enjoy yourself”, there’s still a part of me (a huge part) that does not want to he alone or feel like I am alone.

        I am glad that you are listening to your body and its warning signs but can totally feel your frustration and the difficulty of missing out on these events because of something you have no control over. Always here for support!

    • #11951
      Kathy Mack
      Participant

      I miss out being with my family cause I’m so fatiqued all the time. I feel like they don’t understand. I’m not avoiding them. I miss them. Their too busy to visit me so I hav to go out to see them. Kathy mack

      • #11955
        Brittany Foster
        Keymaster

        Hi Kathy,
        I know that it makes it harder for me on my hard days to get out and interact with people. It’s hard when you miss people but just don’t have the energy. Fatigue is a terrible symptom to manage every day. I hope your family can make some time to see you and go to you!

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