September 10, 2019
September 16, 2019
Finding proper support can be tough, while I have some close friends that I turn to, I always have a nagging feeling that they can't quite understand what I'm talking about. They can still be supportive though. I've had a rough time with support groups being to varied and to "loud" for me, so many times I get a feeling of support just be reading stories and comments by others with the disease. Most of the time, I don't need someone to fix my issues (no one can anyway), I'm just looking for someone who understands what I'm going through.
September 27, 2019
I turn to my husband for support primarily. When my mom was still living, she provided a lot of support mostly just by lending an open ear. I tend to be quiet when MS-y stuff is going on (although you'd never know it by reading some of the things I've shared online) and only reach out to a small group of friends when something significant is going on. But like Devin, I feel a sense of support by reading other people's stories and comments. Definitely gives me that feeling of "not being alone" that we all seem to crave. When things are going well, I'm probably better at giving support than seeking it.
September 27, 2019
Thank you so much for sharing
September 30, 2019
Like Devin and Lisa, I read to feel less alone. It can be the writings of a fellow sufferer, but also something like the book BECOMING HUMAN by Jean Vanier, a pioneer of disability theology who believed that we can become fully human when we love those who are broken.
I'm getting better at telling my loved ones what I'm experiencing too, as well as what I need. Recently I spent a few days with my siblings on a lake vacation, which we do every September. Before an outing to a local orchard, I told my sister that I'd need at least one person to walk on my left so I can take their arm and steady myself walking outside on uneven ground. She was there for me, as was my other sister.
At several points during that visit, I experienced severe sensory overload and had to go to bed and sleep to escape it. We are a very animated, verbal group, and the stimulation quickly sapped my strength and made my brain shut down. They were understanding and supportive.
Often I support others on this site as a means of soothing myself. The giving feels almost as good as the getting.