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What has been your biggest SMA frustration recently?
Living with SMA isn’t just a physical disability. There is an emotional and mental aspect to it, too. Some days hit harder than others, like when fatigue feels all-consuming, or your body just doesn’t cooperate… it can wear on you.
What’s been the most frustrating part of SMA for you lately? Any coping strategies that have helped? Share as much or as little as you want. We’re here to listen and support you.
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3 Replies
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I lost my main nurse back in December, and the past few months have been an absolute nightmare trying to find the right fit to replace her. Why are good caregivers so hard to find?!
Fortunately, we recently found someone, but I still feel like I’m holding my breath, waiting for something to go wrong. Let’s just say that I met a few colorful people who only added to my stress. I don’t know if I have any good coping strategies to share, just using the space to vent!
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Finding new caregivers is always the hardest part for me! Fortunately, I’m in a good spot right now, but there’s always that anxiety about if and when things will change. I just kind of take things day by day, but the mental and emotional toll is something we all deal with.
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I hear you. That’s why I love this forum, because it reminds me that I’m not alone in the messy parts of life with SMA. 💛 Finding the right caregivers should be an Olympic sport.
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