Mary Cookie Simpson developed this set of questions for interviewing CPS survivors. We would love to collect CPSer interviews. Get a friend to set up the camera and ask the questions or make the video yourself.
Before starting the interview decide which topics you’d like to talk about. Add other topics that are important to you.
FIRST INTRODUCE YOURSELF
INTERACTIONS WITH THE MEDICAL COMMUNITY
- What was the basic condition that caused your CPS?
- Looking back now, how long was it until the beginning of CPS sensations and pains began?
- How long and how many Doctors did you see before someone gave you a ”term” for what you are going through? DO you have a definitive CPS diagnosis?
- Were you ever given the “term” or did you find the term “central pain” on your own?
- How did “HAVING A TERM” affect you?
- What specialty of doctor finally was able to diagnose and begin trying some treatment for relief?
- Were you ever told CPS might result from the injuries?
- Have you felt comfortable sharing you sensations, pains and side affects with your doctor? Why or why not?
- Have you had the doctors treat you as a drug seeker, instead of a person who must use meds to function at some reasonable life quality?
- Have you had fear that your meds would be taken away from you if you explained how low your pain levels were?
- How does added injury and illness affect the pain levels?
- What meds or treatments have you found useful to lowering your pain levels?
- Do you feel CPS affected your progress in rehab and physical therapy?
- How has CPS affected your sleep patterns? Are you getting any rest? How?
- What are you basic pain levels?
- Do you spend much time at levels 9 and 10 of “suffering” at which suicide is in your mind?
- What skills and thoughts help you cope past these negatives thoughts?
- How must we express to professionals, loved ones and friends how much this pain impacts every thing we do with out sounding like a “whiner? “
- Just how does CPS impact you in your daily functioning?
- What triggers do you have to try to avoid that always causes more pain? What triggers can you not avoid?
- In your own words, explain what it’s like for you to live 24/7 with this intractable pain syndrome?
- What specific acceptance and coping skills do you use to stay as happy and functioning as possible?
- What mental and physical activities can you enjoy within reason?
- Would feeling “validated” help ease your stress?
- What should a doctor do or say to validate your situation?
- What does your family do or say to ease the stress?
- What are statements no one should ever say to you?
- Are there any tips or ideas you can share that help ease your “suffering” levels and make life with CPS more bearable?
- Can you demonstrate any CPS-easing tip that has come in handy for you?
- Has CPS affected your day-to-day personal relationships? How?
- Do you and your caregiver become impatient with each other? What tips can you give to avoid or patch up these situations?
- How SHOULD we explain that everything we do is planned and scheduled around our peak and ebb pain times?
NEEDS OF THE CPS COMMUNITY STILL AHEAD
- What hopes for the future do you feel will make a difference in the CPS community?
- –Early medication and beginning of treatment?
- — The validation that central pain is not rare and that many conditions can cause this pain?