degenerative disease

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    Hello. I am new here. I'm hoping The Mighty and the groups within will be a help for me. And as soon as I get more familiar with it, I hope that my sharing will help others as well. I've struggled with mental wellness for as far as I can remember and am at a point in my life, with chronic pain issues mixed in, where it has become the most disruptive to daily living than it ever has before. I feel like every day is a fight, mentally and physically. I've decided to take time to look within and try to learn and hopefully, discover what changes are appropriate to make or things I can do to cope on the days when I feel all I am capable of is breathing. I call those days my dark days and there are more of them than not. It was alarming to me when I realized I was defining it a good day when at least part of it wasn't so dark. It has lead me to feeling ashamed, guilty, and worthless. My husband is supportive, however I don't like to share too much with him, about how big my struggle has become and what I go through, because I feel like I'm being a burden and don't want to bring him any worry or stress, as well as be a negative existence in his life. So I hide how bad I feel most of the time, which isn't easy. I'm a currently, non-practicing nurse, a wife, a mother to 4 grown children, and a grandmother to 12. I am very blessed, however I feel like I'm extremely falling short of being the best I can be to my family. And it's been hard to play a very active role in their lives for a while now. I almost panic when I have to interact for any length of time and get overwhelmed quite easily. The physical problems are contributing as well, and I can't help but wonder if they have been produced by my mental health issues. I think that about sums it up. Thank you for "listening". #ChronicDepression #Anxiety #Fibromyalgia #Osteoarthritis #DegenerativeDisease #PeripheralNeuropathy #CarpalTunnelSyndrome

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    Community Voices
    Community Voices

    What’s something you wish people knew about living with a degenerative disease?

    <p>What’s something you wish people knew about living with a degenerative disease?</p>
    15 people are talking about this

    Parenting a Child With Rare Disease: Discussing Limitations

    Perspective is everything. While at the clinic yesterday for a rehab doctor appointment, we were told again that our daughter would never walk independently and that we should definitely stop focusing on this as a goal. We were also told she would never speak clearly enough for non-family members to understand her, and that we should consider a communication device. I told this physician, “We’ll see,” but I was feeling defeated. As we were leaving the office, five mothers commented on how they would be overjoyed for their child to someday use a walker with such finesse as does our daughter. And I felt an incredible gratitude as I looked down at my spunky, sweet girl pushing her hot pink walker past the wheelchairs, and also a sadness for these mothers’ hearts. I wondered how many of these parents had also been told about their child’s limitations that day instead of being told of their child’s value. A sixth parent confided in me, with teary eyes, “My son used to have a walker like that, but now he has to use his chair. He has a degenerative disease.” I glanced over at him. He was beaming with the widest smile I’d seen that day. Her son looked happy, but his mother was so consumed with sadness that she didn’t seem to notice. “He looks like such a happy boy,” I commented. His mother might not have considered that other children (mine included) also suffer from degenerative diseases and that I sometimes have terrifying images of our future scream through my head. Her son was definitely not one of these images; he was a joyful light. Like all rare kids, our daughter will write her own story — not a rehab physician. She may or may not walk independently some day. We’ll see. But most importantly, she is a bright light in our world. Anneliese, Gia’s daughter. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.