Importance of Difficult Day Planning
Living with Functional Neurological Disorder (FND) or any other chronic pain is akin to navigating a labyrinth; the path is seldom linear and often punctuated by unexpected turns. For children grappling with chronic pain, these turns manifest as “difficult days” – periods of intensified pain, heightened anxiety, and a retreat from the coping strategies learned at the Pediatric Pain Rehab Clinic (PPRC). It’s these days that the concept of a “Difficult Day Box,” a tool introduced by the PPRC, becomes an essential tool in the long-term success of returning to a pain-free and suffering-free life.
“Difficult days” are more than just moments of physical pain; they are emotional and psychological battles that children must fight. These are the days when progress seems to slip away, and the coping strategies learned seem out of reach or ineffective. The impact of these days extends beyond the child; it reverberates through the entire family, testing the limits of emotional endurance and resilience.
The first time this happened, I was not ready for it…
Mayo’s PPRC program is fantastic and produces incredible results. It’s easy to let wishful thinking take over, especially when just exiting the program, and allow unrealistic thought of “my child is cured” enter your brain… and then it comes… probably when you least expect it…
Your thoughts are running 100 miles per hour… Did the program fail? Why isn’t the program working? Why the setback? They are not doing DB! They are saying things that make me feel the program had never worked!
You franticly review the Difficult Day Plan for Family Members and commit… with grateful appreciation that such a checklist exists. Your instincts may still fight against some of the concepts like consequencing “pain” and warm neutrality, which honestly, at the moment, feels borderline like cruelty. My first time through this was rough, but I am hoping that in the future, I will be more ready… which leads me to thinking that a “Difficult Day Box” is a great idea, and possibly not just for the kids…
The “Difficult Day Box” – A Child’s Armor Against Uncertainty
The “Difficult Day Box” is a personalized toolkit that kids created as part of their program at the PPRC. It’s supposed to be filled with items that provide comfort, distraction, and a sense of control during challenging times. This may include favorite books, photographs, soothing music, tactile toys, a Starbucks gift card, or anything that can help anchor them back to a state of calm. The box serves as a tangible reminder that difficult days are temporary and that they possess the resources to weather the storm. It helps visualize “difficult days” and likely even helps begin the restorative process through the act of opening it and actively seeking help.
Difficult Day Box
Make sure the box is not empty and is refilled after every use
Multiple Households
You need to make sure you have a box in each household where the child spends a lot of time.
Parent’s Difficult Day Box
Just as children with chronic pains benefit from the “Difficult Day Box,” parents too can (and probably should) adopt this concept for themselves. Parenting a child with chronic pain is an emotional rollercoaster, and having a personal “Difficult Day Box” can be a source of strength.
This parental version might contain items like a journal for reflective writing, a collection of inspirational quotes, a stress-relief ball, or even a list of supportive friends to call. It’s a self-care arsenal designed to replenish their emotional reserves so they can continue to be the rock their child needs. It’s probably not healthy to keep airplane-size bottles of alcohol or cigarettes, however tempting both can be while in the middle of the “Difficult Day” storm.
In addition to the items that all parents can find for themselves, I would also recommend:
- Printout of Difficult Day Plan for Family Members
- Printout of Difficult Day Plan
- Reminder to review Pain Behaviors and Warm Neutrality
- Reminder to review Consequences
Having these resources close in the middle of a difficult day can be incredibly useful and calming… especially when you begin to slip and question things.
Summary
Planning for difficult days is not about expecting the worst; it’s about embracing the full spectrum of the chronic pain management journey with preparedness and compassion. It acknowledges that setbacks are part of the healing process and that having a plan can make all the difference. The “Difficult Day Box” is more than just a collection of items; it’s a mindset, a strategy, and a lifeline that empowers both children and parents to face the challenges of setbacks and anxiety with courage and hope. It’s a tool that teaches us that while we cannot control the occurrence of difficult days, we can certainly influence how we respond to them. For families navigating the complexities of chronic pain management, it’s a small but mighty symbol of their unwavering commitment to rise above the pain and find joy in the journey, one day at a time.