For years my family has always asked me when my jaw/face hurts, me being me, I always no matter what try to hide it from them. There are the times where I am on my knees, but mostly turn my head from my wife or go in the other room. I am in the military so my family back home always wants to know over the phone how things are going, and it has always been a struggle.
So my doctors have always encouraged me to write a journal for myself to see when/where the pain is and I never have. Then I thought about it the other day...start a blog, or a personal journal online. I have only been doing it two days, but it really has helped me a lot...just knowing that maybe my mom, dad, wife or someone around me might understand a little more. One of my co-workers said it "inspired" him to try to help me more if he suspects I am in pain.
Just wondering if you guys' have tried something like a blog?
I have never done a blog but I kept a journal for awhile when my lightning strikes began. I wrote down the date, time of each attack. pain intensity, duration, and the trigger if any I could tell of each attack.
We have a friend that battled cancer and did write a daily blog of what was happening and how she felt. It is a great idea and we (and all here other friends and family) could find out without having to bother them when she was feeling bad and having to answer the many calls she would have gotten otherwise. Also we would get a first hand report instead of relying on someone else relaying info which seems to get less accurate the more people it goes through.
I think it is a excellent idea and will help both you and your family and friends.
Scott
could keep up on how she was doing without having to bother her
I think it's a good idea :) TN is hard because we deal with this every day, but when I talk to friends or co-workers, or family, I don't want to dominate the conversation with my health, even when they ask. The blog will you let you write whatever you need to get out! And then people that want to get information can visit your blog to keep tabs on you :)
My writing is more medical. I just use my Google Calendar and start the title with 'TN' and then in the description I write about pain levels, extra meds I had to take, symptoms, etc. But of course I do also end up writing how it makes me feel too.. stressed, anxious, depressed etc. I think it's good to get our feelings out :) Talking to people in real life, or livingwithtn.org, blogs, journals, etc. :)
I hope your pain stays away as much as possible. Stay strong! Take care :)
From time to time, I post the following link It contains many, many and I mean many informative illustrations which will help your family and friends understand our evil disorder. Share it with them.