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    • #18754
      Katie Griffith

      One of the hardest things about watching your loved one live with FA is constantly adapting to regressions. You work to get the adaptations they need to make life easiest for them, and then progression happens, and it feels like you have to start all over again.

      I don’t know about you, but it makes me feel really frustrated! Life seems to be a constant state of change, and honestly, it can be exhausting and also can bring feelings of guilt if falls or other accidents occur.

      How do you deal with the frustrations of constantly dealing with FA progressions? Are you able to give yourself grace if an accident occurs?


    • #18762
      Karina Jeronimides

      I have FA, so it might be different for you, but the frustration you feel at things constantly collapsing on you  is probably similar.  My therapist says I have walking depression.  I don’t agree with her.  I just push through by getting things done in spite of the odds because I’m hopeful for a better tomorrow. And i know that my struggles matter.  Suffering is only temporary, but getting results that last is an amazing feeling.  Many days are utterly disastrous, and it’s important to sometimes just take a break – cry, watch a stupid movie [escape the real] and sleep – so you can start fresh tomorrow.  Oh, and most importantly, let people be kind to you, so many of them want to help.  And it will feel amazing when others do; it will give you hope.  So my advice is to keep on fighting; pause to recharge, and to trust that others will help when all seems lost.  And never forget that tomorrow is a new day.

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