I wrote this and then distributed to my friends on facebook. The comments back have been amazing in that they seem to understand more greatly why I have been behaving in certain ways. I started the note by explaining what TN was medically. Then I wrote my words:
"I am writing to ask for prayers. I am writing to ask for understanding as well. I may have to cancel things with little to no notice. If you see me, I may seem grumpy and likely that is low level discomfort. I don’t want the left side of my body touched, and never my face. This is not because I don’t love you, I do, but because touching my face feels like thousands of razor blades slicing my skin open. I probably will not want to go for walks out in the brisk air with you as it is pretty painful. The buff I wear around my face is not bad fashion sense, but a protection against the wind and chill. There will be times where my speech might be slurred due to low level pain and/or paralysis. I am not intoxicated. This is just part of my condition. I might be talking to you and mix up my words. I apologize in advance, but this is a side effect from my medication. If I promise to do something for you, and do not come through, I give you permission to remind me. Right now I have short term memory problems. I am getting really, really good at writing task lists, but because I am human, there have been a few errors. So know that I am not flaking on you, or slaking off, this is also part of my condition. If you see me, and you offer me food and I decline, please know that chewing triggers terrible pain. I don’t want to be rude, but I really can’t chew. If you see me and start talking to me, but I shake my head or put my hand up, it’s not because I don’t want to talk or engage with you at that moment, but the volts are shooting through my teeth."
Anyway, those that are newly diagnosed might want to take a similar approach.
Informing and engaging your family and social circle with details such as you offer, Lisa, is an excellent and compassionate step in a very right direction. I applaud your willingness to inform others of what you deal with, in what seems like a gracefull way.
I’m going to show a friend this. I went to church with her today and she kept talking to me and then asking if I was okay because I didn’t seem to be listening. It wasn’t that I wasn’t listening. I was just in pain.
Thanks Lisa. My Pastor aproached me tonight and asked me about TN. He acted like he was afraid to shake my hand. I asked him if I was scaring him. He said he just wasen't sure how to aproach me. He asked several questions. Behind me sat a friend in my SS class, She is a first responder. I live in a small town and if you ever call 911 she would be one to come out. She started asking questions also. They really cared but they don't know much about TN. So if I may have permission to copy your letter to share, I would appreciate it. Maybe I can share with church so people will be aware. I want to share something with you. The day before my 1st episode on Friday Dec 9th. I had a frustrating day. My husband had lost his job the day before and we were running around and we were both irritated. We finally got home and I had been TRYING to make chicken soup all day. Well, I was in the kitchen just thinking junk to myself and when I moved my pot of chicken, staring back at me was this PRECIOUS FACE where the stock had boiled over. It made me smile so much that I asked my husband to come see and he couldn't help to smile too. This smile has kept me going thru all this. I am so glad my daughter saved a picture. Enjoy.
Please do use the letter! I shared it so that absolutely people can share. So many do not understand. They think they will harm you by simply touching you -- and sometimes you do want that hug, handshake, or some human contact.
I was diagnosed November 16, 2011. Very newly diagnosed. Still waiting to see a neurologist. I am unemployed and uninsured right now so it is a rough road to get the medical care I need.
I thought our dates were close. Dec 14, 2011. I Was able to jump on a cancellation appt. with Neurologist 4 days after 1st episode. What state? I am in SC.
I am in Oregon. I am waiting on financial assistance. Had to send some paperwork in. Had it been approved when they called me on Tuesday, I could have seen them as early as last Friday.....
I have been hesitant on 'telling' everyone about THIS... I took your lead and added part of your perfectly written explanation along with some of my own stuff; so much out pouring support and my friends / family are thankful that they now know why I have been missing church and other things that I never miss. thank you for the courage to 'talk' about it outside of here... :D
AW! Thanks. I am so glad that you are opening up about this. I think you will find that people will be mostly supportive about it. They won't really understand, but they will honor you. Does that make sense?
Lisa, that is beautiful. I haven't figured out a way yet to tell people what I'm going through. I think this is amazing. Thanks for sharing it with us. I'm sorry that we all even have to think about telling the people we love how much pain we are in. Good luck to you.
Thank you typqueen. I struggled in the beginning with people wanting to "help" me. For me, I needed a quiet place to rest without people asking me endless questions. Also, I was disappointing so many people because they did not understand what I was facing... I do know that I received so much support after this post. People understood my overnight odd behavior.
I live with my parents right now. They left for Colorado. I am a single parent, raising a teenager who is very active. In the beginning, I could not even drive her places because of the pain and meds. What was amazing to me, is my friend (my mom's best friend who I call my second mom), arranged for my friends and my mom's friends to be "on-call" the two weeks my parents were gone. If I needed ANYTHING, I was to call the list of people. They each in turn, called and checked on me. It was incredible. Had I remained silent, I would have not received that type of support. I am thankful that I found a way to get it out so people understood.