When a child has Complex Regional Pain Syndrome, keeping them active and socially plugged in is an important strategy for emotional wellness. However, it can also be one of the more difficult, if not sometimes impossible things to do.
Who wants to go out or make conversation when you feel like your limb is on fire?
We are eleven months into the CRPS nightmare with my eleven-year-old son. Thanks to Xbox, Minecraft and Face time, he has managed to keep up some of his friendships from the comfort of our couch. But after a surgery and recent pain flare, he has been home a lot more than usual lately and has been unable to return to school. While we have had enough family time to keep us from missing each other for the next ten years, it has been a bit isolating for all of us. So when we were recently invited to a New England Patriots playoff party in our neighborhood – I saw an opportunity and JUMPED on it!
My son would normally have been excited to go, but when I told him about our plans, I noticed he was less than enthusiastic. As we got closer to party-time, his mood seemed to sour and he started closing down. “Don’t you want to go and see all of your friends?” I asked. And as his eyes welled up, I realized it wasn’t that he didn’t want to go, it was that he was afraid to go.
In our insular world, we are all very well versed in how to handle “the leg.” We are careful not to bump or touch him as the Allodynia is excruciating and will set off an overwhelming few moments of pain. We know even the slightest vibrations, a ride in the car or something as simple as loud music; can sometimes cause problems for him. The family dogs also need to be kept away when he is up and walking on his crutches.
Now I don’t want you to think we are the Hovercraft family. My husband and I work hard to enforce a positive attitude towards pain, and we try to keep it in the background of our everyday life encouraging our son to be active and keep up with normal activities as much as he can in spite of how he is feeling.
However, I could see that this social anxiety was starting to get ahead of us. I realized that if I was ever going to get my buffalo wings and party-dip on, we needed to come up with a plan:
- Communicate Your Needs: I called and talked to our hostess about my son’s anxiety. I wanted to make sure she understood that I would take full responsibility for everything, but just wanted her to know in advance that we would be looking for safe and contained places for my son to sit throughout the evening.
- Enlist Help: Most of my son’s friends have a pretty good understanding of his pain, but let’s face it, there is always some kid who is a bit unpredictable or has boundary issues that might get a little too close. I talked with his best buds about how they could help by being aware and respectful of my son’s leg and making sure other younger kids don’t get too close during the party. Those pint-sized bodyguards were more than happy to help out, and I think it helped my son to feel better knowing he had allies to help ward off any unwanted physical contact.
- Shared Duty: Since my hubby and I were also in need of a mental break, we decided to take turns being “on duty.” Just knowing for a full hour and a half that I was “off the caregiver clock” gave me a chance to really relax and engage with friends without being preoccupied. It felt really great!
- Code Word: I wanted my son to know that he always had an out. If his pain became unmanageable or he wasn’t able to enjoy himself, I wanted him to know that he would be able to exit – no questions asked. So we came up with a safety word. Gronkowski! If my son decided to throw it, we agreed in advance we would not stall or ask for more time, or talk to him about his pain, (because he said that would embarrass him) we would just head home.
I think creating awareness, assigning his allies and giving him some control over his situation, really helped my son to feel like he had more control. As expected, once we arrived and he spent some time with his friends, he eased up and really enjoyed himself. We all did. It will be interesting to see if lightening will strike twice as we head into the Super bowl this weekend. I made my party dip - here’s hoping!!!
Does your child exhibit increased anxiety about going to school or out in public when their pain is higher? Do you have any experiences or recommendations that you can share with other families that might help to ease the situation?