I have always been a very active mom. Granted, I have just been diagnosed. But she broke my heart today. She asked if I would take her to the mall. I said I could not. She said, "You are letting this rule your life." She is 13.
The medications have me so off balance I am scared to drive. Also, I don't know when an episode is going to start. I live in fear that I will be out somewhere and not be able to make it home. This happened just the other day while I was picking medication up from Target. My daughter was with me and ran to get me water really quick to get my meds down really fast. I have found that if I get Aleve and Vicodin in after feeling my first electric shock, and then hold really still for a few minutes, the pain in my jaw that comes next doesn't come or at least not so bad that it disables me.
I am trying so hard to make her understand how it feels. And trying to reassure her that the goal is to get treatment so that it is not like this forever. However, being a single mom, you can imagine how this is effecting her as well.
Any ideas or tips? Of course as a teen she is focused on just her. She does have a very compassionate heart. I just want her to understand how dangerous it is for me to drive and how much pain this really is. UGH.
Much sympathy to you over this. There is no more self-centred person than a teenager, they just cannot help it. I am so glad my girls were a little older and can be empathetic to their mom. If you put driving in the search box at top right you will find a discussion Gloria wrote about driving with some TN drugs. It makes very interesting reading.
I really hope you feel somewhat better very soon and don’t forget, teenagers do grow up! Then they stop being aliens!!
There is also a section in our seminar on "Coping With Crisis" (under the Face Pain Info tab above), on "When a Family Member Doesn't "get it"". It can be particularly tough with younger teens, who tend to go through a period of self-absorption and biochemical instability anyway. They aren't always reasonable, even when Mom isn't having a rough day. Suggest you print out the story on the Eight Foot Tall Demon, and share it with her. Acknowledge your fear. You don't have to be 'the parent' every minute of every day. You're a human being dealing with a fearsome medical condition.
As Stephen Koonz relates in his "Book of Sorrows", "A shared sorrow is lessened, a shared joy increased."
Jackie, as a lawyer, I am very familiar with driving under the influence. I saw Gloria's thread on that and thought about responding, but I don't want to be the typical lawyer that repeats what other says and she pretty much covers it all. I tried explaining to my daughter that I would lose my license to drive if caught, and could be suspended from practice as well. That stopped her for a minute.
Red, I did think to have her read that today after I read it. I have explained how scared I am. And when I went to the ER before I knew what I had, I scared her because I was crying that I wanted to die, that I could not deal with the pain. This scared her because her father is not in her life at all, I am all that she had and it freaked me out that I hurt as much as I did. Her patience is wearing thin.... the whole self absorbed thing. It bites. I am hoping that things can level out a bit soon, and maybe we can have some friends over or something.
You may already have thought about this, Iamrite.... but one message may be of real help to both you and your daughter:
"Together we are stronger than either of us can be alone."
You can reassure your daughter that you're fighting with the TN monster, and that her participation with you (even if it's only silently holding your hand) is help that you invite and benefit from. You're not asking her to be a little adult. Just a more than average mature teen who part of the time puts on the empathy hat and tries to see the world from her mother's perspective and without her mother's fear. You're not asking her to approve of you -- just abide with you in silent support. You know who you are and what you want -- and to be "there for her" is certainly one thing that you want. During a bad but basically temporary situation, you need her help in "being there" for you as well.
As Stephen Koonz writes in his "Book of Shared Sorrows", "A shared joy is increased, a shared grief lessened."
Have you tried lidocane cream or patches for breakthru pain? With a patch I had 12 hours to get done what was needed while still on low dose of trileptal
Hi, Lisa. I'm sorry that you are going through such physical and emotional pain right now. I can very much relate to your situation. I have three adolescents, ages 11-17. I had a seizure 6 weeks ago, and had to surrender my license for six months. It already seems like forever to us. Not only are teens self-centered, but they NEED to get out of the house. I have found that when I explain my situation to other moms, they are more than happy to do the driving so that my child(ren) can still be included in sleep-overs, hang-outs, and other fun activities.
I had an experience like this but with much younger son who is only three and I had tears in my eyes. I had been quite quiet and he came to me and put his head on my chest and said"Mummy does your head hurt again?" he then stroked my cheek. I felt like the worst mother in the world.
She has been a trooper. The night I had to go the the ER we had midnight viewing tickets to Breaking Dawn and she was so jazzed. My mom took us to the ER, and I was crying because I knew it would disappoint her. And the tears were bringing pain, but I could not stop. She said to me, "Mommy, I don't care about the stupid movie. I care about you."
It just hurts that she gets disappointed and we have to cancel at the last minute. I told her that we were going to have to plan better and that we will talk to some of the parents to let them know what is going on with me. We will have to learn to ask for help.
Two days ago, I told her best friends mom what was wrong with me. I had only met her a few times, and did not know what she did for a living. Turns out she is an RN on the observatory floor which gets a few TN patients overnight. She let me know if there was anything she could do to let her know. I was touched and grateful that the first of her friends parents I explained it to was someone that understood.