My last go around I was living with my parents and my daughter was in middle school. My parents were able to sheild my daughter quite a bit.
My daugter is 16 now and I am out of my parents home. I also have a demanding and successful career. I am barely keeping things together right now. I structure my day so I can leave the office by 3 which is hopefully before the worst of the pain hits.
We are on week 4. And my daughter is having a hard time. Part of it is that I have had to slow down. I am not cooking. Heck I am not “present” … She actually screamed at me tonight that I am self centered.
I do not know how to help her to understand. Any ideas?
I was going through the same thing. I had this for 3 years now and in the beginning my kids didn't believe me. I have an 18 and 15 year old kids. One said stop acting like your in pain. You can't even go food shopping. My daughter said you are always tired and in bed. I was so hurt by those and other hurtful comments. I cut back on a lot of things because of this. I would talk to my mom, sister and brother about this and cry about how much pain I'm in and how my kids are so hurtful to me. I know they have been talking to my kids about how serious this is. I talked to my kids about it as many times as I can to try to make them understand. I evened cried at times because I couldn't talk but needed to finish explaining. Finally a few months ago I started talking about surgery and they were still so cold about it. I continually explain that this is the worst pain and that surgery is extremely dangerous. I had both my kids look it up online and they finally have come around. They have been so supportive the last couple of months I can't believe it. One less thing to stress over and deal with.
So I think giving them all the information you can about it and how you feel and what you are going through helps. Having them look it up and read about really helped them understand that this is serious especially since this is called the suicide desease. I think that opened their eyes. I know my son looked it up on Wikepedia. That gave a lot of information and the history about this disease. Now they come and check up on how I'm doing and give me space when I'm having attacks. Keeping them in the loop and having them learn about this made all the difference. I wish you all the best.
It’s so difficult, both on us as well as our children. Different ages, different communication…
I was 29 when first diagnosed, I have two daughters, they were young, my oldest remembers that year, my youngest doesn’t at all.
I’m 42 now, when my left side became a major issue after a long remission, my youngest was 13/14 she’s now 17.
The past 3 years my TN has incapacitated me …I went from active, working part time, volunteering etc etc to home bound , no driving, no working, on the couch 24/7.
So you can imagine the changes that have affected our family as a result,
My best advice is to communicate honestly about everything…it will take more than one conversation…I think it’s a gradual learning process and takes open honest continuing talks.
Finding ways to help one another and still be present for the important things as much as we are able.
Of course our situations are different but one way I’ve tried to still be “present” is by making sure ( as much as possible) that I’m awake when she comes home from school, and talking or listening to her about her day. It doesn’t always happen, in those instances I text her and let her know ahead of time that I’ll be napping, or I can’t talk due to pain. I’m also honest about my abilities to cook, we now keep easier things in the house or I start early in the morning prepping things so that it’s easy for her to finish making. Take out happens more than I care to admit…
I rely on family or friends to help as well.
A few years ago I wrote a post about my youngest, I’ll look it up and post it here…http://www.livingwithtn.org/forum/topics/living-with-tn-and-the-emotional-side-effects
The teen years are hard enough on us parents let alone deal with TN at the same time…you are not self entered and you know it, you are present, just not the same way as before. The pain of TN when not controlled is excruciating…the side effects of the meds can be so limiting as well.
Be honest with your daughter about how hard it is and let her know you’re going to need her help. Reassure her that she remains your priority and ask her to talk to you about what’s important to her .
For instance, you might need more notice than usual to accommodate her requests for rides, parties, sleep overs, get togethers with friends and school functions.
It’s a roller coaster Lisa, but keeping the lines of communication open helps ease all the changes.
Sending you positive thoughts… And (( hugs )) Mimi
Thanks Mimi. My daughter and I are close. We watched a documentary about it tonight. I think she realized I am not inventing this.
We have 3 girls 11 - 9 and 7. I’m grateful my wife is very empathetic and it’s rub off on the girls . They try to be quiet when Daddy has to lie down. But I won’t lie I’ve worried about the effect this has had on the kids because I’m been so emotionally and physically not myself the last 4 years , so we have a therapist come once a month . It helps with my guilt for my wife to say I am great Dad everything’s ok ! Thanks for sharing I need more of this. It’s easy to feel isolated.
Hi Lisa, I’m so glad…it’s like walking a tight rope with teen girls sometimes…it helps that your so close,
John, sounds like you’re doing the best you can, that’s all any of us can do…I’m always worried my ‘kids’ won’t remember what I was like before TN…it is nice to get reassurance every now and again. I’m always grateful for it.
I swear we’re our own worst enemies sometimes…too much time to think .
Kids are pretty resilient, they adapt better than we do.
(( hugs ))