I’ve only had TN for 10 month. Until recently I had been doing well with distracting myself. It’s not that hard when you have 4 kids under the age of 8. Between their social calendars, extracurricular activities, and all of the volunteer work for the big kids’ school and my 4yo preschool, I stay pretty busy. It’s just that lately I’ve been so frustrated. As if the failed MVD and the failed Glycerol Rhizotomy that seems to have made things worse wasn’t bad enough,I’m back to “drug roulette” as I like to call it and blowing through them at lightning speed. It’s just so frustrating that I’m so sensitive to these medications that I have to stop them with a few days of starting. And none of the drs seem to want to talk about what we’re going to do once I finish what’s left to try. Unfortunately my frustration is starting to come out at the kids. I know they don’t understand that mommy is in pain and frustrated, but I can’t seem to stop overdoing it in the punishment department. I need a new outlet for all of this.
I know how you feel. I have 3 kids 8 and younger. I haven’t done any surgeries yet, but I am working on finding the right meds too. Unfortunately my kids have seen me cry from the pain. Sometimes the painonly lasts a few minutes, so I sort of bow my head down and cry and tell the kids to give me a minute. The kids must be scare when it hapens. Sometimes, If my husband is home, i excuse myself into a bedroom and cry until it stops.
When i feel up to it, i try and distract myself with their activities. If I can keep them occupied, they are behaved better and I have to punish less. Yelling is one of my problems. I know I do it more than I should and it makes me feel bad. Then the stress builds up and the pain episodes come more frequently. Viscious cycle.
Sorry if I am venting instead of helping, but maybe knowing that others go through the same thing helps you get through it. We are trying to be good moms and I think the kids know it. I apologize if I know I was unnecessarily tough on them and they are very forgiving, even the 3.5 year old twin boys. My oldest, 8 year old daughter, is the tougher to deal with. She hasn’t seen mom suffer for most of her little life like her brothers. She doesn’t understand that I can’t play Barbies whenthe pain hits, or the constant pain is more than I can handle. But each day, i try and make them understand that I am still their mom and love them more than they might see on a bad day.
I am going to try finding time for myself too. Maybe yoga or a shoulder massage or something. Maybe pampering yourself might help.
I don't know if you have seen this list of many many meds that were collected here for helpful for pain:
Topical Meds are on there also! Especially my favorite - Lidocaine face patches.
I hope you get some pain relief!
Coping while caring for children makes the process a lot more complicated. Along yourself and your children a break. For kids, it's all about them, as it should be. You'll need ways outside of your role as a mother for coping strategies. Take all the help you can get so you don't become too overwhelmed. Find something that works for you...church, book club with girlfriends, free youtube self hypnosis techniques (sounds woo woo, I know, but I find this very useful). Meditation. Self help and happiness books. Watching more comedies helped me. I didn't watch anything heavy or violent for a long time. I hope you find an outlet that works for you. It may keep changing too.
I hope this helps a little. Wishing you well. Hugs.