When someone you love hurts, you hurt too.
I remember watching my son huddled under his blankets, shaking with pain and unable to speak. All I wanted was to take his pain from him. I would have done ANYTHING to take that pain from him.
The advice I was given – good research-backed treatment from some of the best specialists in the world – seemed unrealistic and counter-intuitive.
“Send your child to school”
“Follow a strict diet.”
“Aerobic exercise, 5 times a week.”
“3 liters of water a day.”
“He’s got to meditate.”
Did they have any idea what it was like parenting a kid in pain?
My son could barely stumble to the bathroom. Go to school? I felt like a failure at my most important job as a mother – protecting my child from getting hurt.
1step2life was designed to support people living with pain & the people who love them.
When someone has a chronic pain condition, doctors and other healthcare providers treat the patient – as they should. If that patient is a child, however, it’s often the parent who implements the plan and makes sure the child follows through. When that ‘child’ is a teen or young adult, or when your spouse or partner hurts, they probably take primary responsibility for their own care.
That doesn’t mean they don’t need support.
It takes a lot of encouragement to help the person you love do the hard work that needs to be done. Working through pain is HARD. And sometimes you just want to keep track of what’s going on so you can be a more effective helper.
That’s why the 1step2life app is designed to support two types of users – people in pain and the people who care for them.
- Set goals and log their child or partner’s pain, daily mood, and functioning.
- Focus on coaching and support rather than nagging and demanding.
- Attend to their own well being by logging their own moods and goals.
Focus on progress.
All pain apps track pain.
1step2life does more. Track progress with just a touch – all the small things that people living with pain struggle to get done. Getting out of bed. Taking a shower. Feeding the dog. Eating with the family. Making it to school.
You can log important social and personal goals as well – chatting, taking care of others, doing something fun. Plus the basics: hydration, sleep, diet, taking meds, exercising, and reducing stress.
Why log activities?
Research shows that in chronic pain rehabilitation, functioning improves before pain goes down. Being inactive – particularly staying in bed – causes muscles to break down rapidly, increasing pain and making even simple things like walking hard. This makes it hard to tell which symptoms are caused by the original condition and what comes from deconditioning. It’s a vicious cycle. Pain makes you avoid activity. Inactivity causes more pain. Inactivity also gives little to focus on beyond pain. Distraction and the positive energy that comes from doing things you enjoy change how the amygdala processes and interprets pain and makes it easier to tolerate.
For caregivers, it can be hard to see progress when the pain is still so very real. Tracking improved functioning and activity documents progress and builds hope. Tracking what people DO allows caregivers to look beyond the pain and see the progress.
Improve your coaching. And your relationship.
As my son’s pain worsened, it seemed to consume our relationship. Every time I looked at him, my first thought was “how much pain is he in?”. I held my tongue – knowing asking made it worse.
But my first words would often start “Have you . . . “
. . . taken your medicine?
. . .done your physical therapy?
. . .had enough water?
And if he was feeling okay, it was “How’s your homework?”
1step2life helps you work more effectively as a coach. Having your child or partner use 1step2life to log their own progress helps them take ownership of their care. And logging can help them focus on meeting their goals.
You can also track your own coaching progress – Did you ask them about their day? Share an activity you both enjoy? Compliment them? Let them do things for themselves? Positive interactions that don’t focus on caregiving and pain can help build and maintain a fuller, healthier relationship.
Set weekly goals for yourself or the person you’re caring for. Then track them in your daily log.
No one can meet all their goals every day – not you and not the one you love. But if you focus on what you DID accomplish instead of all the things you didn’t, you’ll become more effective as a coach, and they will take ownership of their lives.
Download our annotated reading list for parents and caregivers.
Although there are many books on pain physiology and living with chronic pain, these resources are really outstanding. Written by leaders in the pediatric pain field, they provide a clear explanation of the physiology of pain and pain rehabilitation. I also found their discussion of how different pain medications work particularly valuable in discussing treatment options.
Download an excellent review of school re-entry for youth in pain
In addition to summarizing the literature on pain rehabilitation, this review also includes:
- A philosophy for chronic pain and the role of the school staff,
- A checklist for school re-entry planning meeting.
- A checklist for possible accommodations and supports..
- Links to background material on the differences between 504 plans and IEPs.
We’ll send you the science!
Like your science in small bites? Sign up and we will mail you a series of short articles summarizing key topics in pain, pain rehabilitation, and caring for kids in pain.
- Chronic Pain 101
- Neuroscience 101
- Retraining the brain
- Emotion and the perception of pain
- Logging success, not pain
- The science of pain rehabilitation
- Getting kids to school and out of bed
Want to make this app work for YOU?
We are recruiting people in pain, parents and caregivers, and healthcare professionals to help us finalize the design and functionality before we release in July 2020.
Sign up for our newsletter to follow our progress and hear about opportunities for beta testers.
We respect your privacy.
The accounts of family members, caregivers, and those living with pain are completely separate. We know that for you to take control of your life you need to be honest with yourself. Privacy is essential to that process.
1step2life will never sell your data.