Keeping your mental health

[4Nikki]

Living with a pandas/pans child can be extremely trying. And one with rage symptoms can test anyone mental state. What are some of the things you and your help do to deal with keeping mentally fit. My DW breaking up and is close to calling it quits and I'm search for any recommendations.

[MomWithOCDSon]

It is a very tall order, keeping your own sanity and your adult relationships intact through the stress of a sick kid. Here's what we tried to do (not always successfully) to keep it together . . . literally and figuratively.

 

Take advantage of even those brief time periods when you and your spouse can get away by yourselves, even if it's a trip to the grocery store or a cup of coffee down the street, or maybe even sitting on the patio at the end of the night, once your DD is tucked in. And even if you're not always on the same page with respect to your DD's care trajectory or options, just re-affirm your commitment to get through this period together, whatever it takes.

 

If things are too difficult for any real time away from home together, then at least make sure that each of you gets some time for yourselves, alone and doing something that is rejuvenating for you, whether that's 9 holes of golf or a mani-pedi or a drink with friends. We found that just doing something "normal" and "fun" once in a while helped refresh us for the "PANDAs fight" back at home.

 

And finally, try holding on to the knowledge that this is not forever, however protracted the battle may have been to this point and however difficult it is to actually see a light at the end of the tunnel as of today. Many of us battle for years, but healing does occur, the heat of the battle does lessen, and you will get your life back . . . perhaps not exactly the same, but good and rich and fulfilling nonetheless.

 

Hang in there!

[emst]

I found myself both afraid of losing my child and angry and frustrated with my husband who couldn't see what was happening at the time. Pandas kids really do get unglued and its easy to forget that they are still in there, still your kids and they still very much need you to parent them through this mess.. I found myself shouting at my daughter one night that I was her mother and I will do everything I can to get find the practitioners who can get rid of this illness but until then you what I ask you to do in this house. This was a big fight over brushing her teeth and she had gotten 6 cavities over the course of a year because she thought that there were specs of bugs on her toothbrush things like that which were very real and scary for her became hot buttons but she knew I was not going to give in and we got through it. Fast forward a few years she is very much better. She has tough times sometimes in the winter but she can self advocate like a champ. There is a residual resentment toward other people who appear to be free wheeling and problem free but she is also learning that almost everyone has problems we cant see and if they don't now they will one day for sure.

[FallingApart]

I have not yet figured this out yet. But I will say the one thing I have learned through this. I am no longer able to relax. I cognitively know what to do to relax-I'm even a certified yoga teacher, but am unsuccessful at it. The only respite I can get is if I pay someone to relax me. I have 2 personal suggestions. Neither solve my problems, but they make the day a bit better. My body is stuck in fight or flight so I belong to massage envy as the most affordable way to get some temporary relief. Organization skills are not my strongest skill and dds rages further destroy the house so we have cleaners whenever we can stretch the budget. I would rather not eat and have a peaceful living room because it does more for my sanity.

 

I highly suggest finding even one thing that can even slightly help and focusing on it. Forgo something else to afford it. And don't forget yourself either because both parents need to be in as good shape as possible.

[michelleb]

This is an incredibly difficult thing to go through and I am not sure I will make it but I run. I can't do it everyday - and sometimes there is more walking than running but it helps to get outside and away, and cry. I literally bawl while I am running. My nieghobors may notice but that it the least of my problems. At least it gives me an outlet away from my kids. It doesn't help either of them to see me cry in the house. And sometimes I do see neighbors and stop to chat. I literally sometimes feel myself take a full breath for the first time in days. And please believe me, I am not athletic or a runner. It has saved my life though.

Also, my husband and I take turns doing fun things with my daughter, who is not sick. It helps keep us sane and gives her attention and time away from all the stress too.