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Do you miss out on and have to cancel more activities during the summer?
Summer is full of social events and outdoor fun, but for many of us with MG, participating in activities in the sun and heat isn’t always easy or smart for our bodies.
Do you feel particularly isolated or left out during this time of year?
How do you explain MG limitations to friends and family?
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4 Replies
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I loved to attend concerts, festivals and sport events. Typical summer enjoyments would include sitting and chatting with friends in a German beer garden. All those activities belong to the past. After 2 years of MG I am not stable and strong enough for any of these options. Summer heat makes it even more complicated. I now try to make short visits to social events despite my lack of mobility and the everlasting threat of stomach problems. Had to learn though that it would not work without some friend´s support. Next week I want to go to a small Rock Concert. Got the ticket, enrolled as handicapped person dependent on rollator and a person who takes care. Looking forward, pretty nervous though. It is a first step, hope it´s gonna work….
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I am finally stable and grateful for the improvement since my diagnosis. I can’t tolerate heat or humidity, nor long walks. I suspect some of that is being 78! I’d rather have good days even if it means avoiding stresses my body can’t handle. I’m lucky I have a great support network that accommodates each of our needs. I miss going to music festivals and hiking mountains with my dogs. But I plan beach outings for early morning and find slices of my old life! Feeling good is the ultimate joy.
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I live in the St. Louis area and it is very hot and humid here. In the past I would love going to outdoor concerts, pool parties, and backyard BBQs. Now, I sweat so much it is embarrassing. Plus I experience breathing issues and extreme exhaustion. If I could get in and out of a pool gracefully, I would probably be okay at a pool party but that isn’t working out very well. So, I decline many invitations if it means being outside in the heat. I explain that having MG takes a bigger toll on me in the summer. I don’t think most people understand and may even think I am just making excuses. But, I have to do what is best for me.
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I’ve been to the beach and an outdoor concert and meals in the last few years, and played with the grandkids outside and in the pool. This year I’m tired, not sleeping well, haven’t done much outdoors, and have cancelled outdoor events and even a lot of indoor events. Didn’t have success in getting my MG dr to increase my meds, but I’m going to my neurologist this month to talk to him before I go see my grandkids. Always looking for improvement, ever hopeful
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