I have started a blog about my disease and oh lardy the fall out. All I'm doing is explaining the situation. I am not whining, I am not doing a diary. But i am honest in it and that might have set them off. My post will have my thoughts and observations in them, and I expressed that they are mine, so I don't get their upset. It has helped me mentally, shouldn't they be happy that I am not feeling bad or depressed?
I would think that if writing a blog and being able to speak honestly and openly expressing YOUR thoughts makes you feel better, they should be really thrilled for you that something does. Try not to get upset with them. They don't understand and probably never will so choose your battles because excess stress only causes more pain. I would ask them the exact question you posted here and see what their response is. If they give you grief then tell them that you are doing this for your own well being and mental wellness and to leave it be. You always have all of us here who understand and get what you're dealing with. Perhaps not with specific diseases but with the pain and all the turmoil that comes with it. I wish you the best of luck and pray that you get some stress and pain relief 🙏🏻🌻
I think its great your doing something that helps you. Its hard for people who don't go what we go through to understand or be understanding. I agree with alwayz .. maybe you can ask what it is that is upsetting them about it. It might be they are just misunderstanding your thoughts and it is something that can be easily cleared up with conversation.
I think family members are thinking we are finding excuses for being couch potatoes. I think most of us have gone through the phase. Worst part was doing self harm to myself. I would never do that again.
My mom and wife was with me post surgery and saw what I had to go through and still feeling pain after, they understand me so much more now. No one in hell would do facet jinx and nerve block surgery for the fun of it I tell you.
Zetarlov, it's good that you're finding a way to relieve stress by expressing your thoughts. Like the others suggested, ask them what about your blog bothers them. If they can't really explain it, or if they say they don't like what you're writing, just tell them they don't have to read it if it upsets them.
Our families will never truly understand us or our problems. Just today I told my hubby I wish he could go through what I our his mom go through for just 24-48 hours. If he did it might make him understand and not be so impatient and shaky like he gets (and got today). He got quiet then apologized for his attitude.
I wish you the best with your blog! You are not responsible for their feelings, no matter what you write. Each of us controls out own happy, sad, silly, or nasty feelings. And I'm glad you feel better from your blogging. You probably did u yourself from present up frustration! And Octobot is so right... Not one of us would willingly choose those treatments! 🙏🌼
Sorry your family is having such a strong reaction against you expressing yourself. If they don't like it, I figure they don't have to look. That's their choice. It's always good to get strong emotions off of your chest. I hope they can learn to be okay with it.
The hard part is I'm trying to find humor in it.and it is mostly about the disease and the journey to recovery. I even wonder if they have even looked at it, because they haven't ask what the site is called. She did say that I don't have chronic pain. And when I asked if she understood wwhat that meant she said it was just a term lazy people use. This coming from my mom. Now that I did get a good laugh at. Of course she had a problem with the name -funnytailbone. .but everyone else liked it. Thanks for letting me vent and thanks for the encouragement.
I finally wrote out my story and put it on wattpad. I can't believe how much better I've felt since then. If anyone feels so inclined, they can go to wattpad and read it. I can be found there as maryanncarpenter, or maybe it's Mary Ann Carpenter. Darn it all, now I'm going to have to go look. LOL I've gotten positive feed back from the few that have read it.
PS... don't let your family's disapproval stop you from doing something that helps you! It could be just that they don't want to admit you are in such pain because there is nothing they can do to help you, and they feel guilty because they can't. My family is the opposite, we argue about who is in more pain, and that was even before our EDS diagnosis.
I must admit that my family is very unique. LOL We are one of a kind, but there are many, many of us. Even my Grandma got into the arguments. You know that once she hit 90, no one could top her pain! I miss her so much some days. Now it's my Dad, he'll be 79 on the 25th of this month.
I'm doing wordpress.com. I owned my own wedding business so i was use to writing in what i call speak voice. But setting up this blog is still a learning process. All the copyright laws you have to follow is limiting and not fun. You havecto get permission to mention names or web content.