How to be Helpful to Someone with RSD, Chronic Pain/Illness

How to be Helpful to Someone with RSD, Chronic Pain/Illness:

• Say, “I'm going to the store tomorrow. Is there anything I can pick up for you?"
• Listen without advising or judging. Listen until it hurts...then listen some more.
• Offer to take him to the doctor or dentist and do something fun afterwards--Beat them inside and pay the copay for them (usually only $15-30, but on disability this adds up!!!)
• If they have furry friends, stop by with a bag of whatever brand your friend feeds their cat/dog. Or cat litter, or a new "pooper scooper" that might be easier for them to manage....
• Offer to take care of her kids for the day.
• Show up with cleaning products. Bring her a favorite beverage and a new magazine and tell her not to be embarassed...”That you've seen it all before”
• Bring her flowers or a healthy dish. Or both.
• Give him a gift subscription to an encouraging magazine.
• Send a gift card to his/her favorite online reading, hobby site--many RSD-ers are on disability or some form, if they have a “Kindle,” for example a gift card for one or two Kindle books; or one or two audible.com books (www.audible.com is a Amazon company)
• Give her a gift certificate for a massage, a pedicure or the movies. Something that when you are “living broke” you aren't going to have for “an occassional extra”
  
• Buy him an encouraging book and include a bookmark with a note from you.
  
• Buy matching mugs and agree that whenever either of you uses or washes them, you will pray for the other person.
  
• If you are a neighbor, ask if they would like you to bring their mail (they may be working on increasing activity) or if they want someone to walk to the box with and back, and then help them get settled and comfortable...
  
• Have a “girly day,” visiting a craft show, having tea/Starbucks, getting your hair done, or seeing a “chick flick.”
  
• Help and encourage home PT programs—offer a ride to the YMCA, maybe while your kids are in lessons
  
• Ask what, if any, chores they want or need help with (this part can be hard to admit for your friend—be patient. Let them know to think about it, write down your email (clearly), and let them know when they are ready they can ask.
  
• As much as your heart may be in the right place, do not email articles on “RSD that you just happened across”. Chances are-to them, it's RSD099, and it's frustrating, and can feel somewhat condescending. Remember: They live with RSD every minute of every hour of every day, and it's little more than a waste of time, and kind of hurtful.
  
• Trust that your friend is working with at the very least, a neurologist, who has treated RSD before.
• Trust is the basis of every friendship, every good and working relationship. Trust that your friend will not jump into the deep end of the pool blindfolded on the first day. Also remember that insurance companies, not doctors basically run the show, so know that it's usually some pencil pusher with a pocket protector, a computer, no working knowledge of RSD, etc, though that is going to dictate what treatments your friend has to, for the sake of cost, even with the best insurance, try the less expensive methods first.
  
• But know she has done her homework, thought about it, prayed about it, and probably talked to some of her spiritual guidance leaders, and a few other friends she trusts first. If you wonder why you're not amongst them, ask yourself about your actions during that time in her life:
  
  • Did she feel judged?
  • Did you send continual articles on RSD to her during the early times of her diagnosis?
  • Did you tell her to “pray more?”
  • Perhaps that “God was sending her a message?”
  • Telling her that she was making a “bad” choice?”
    
  • Telling her she was “drugged”
  • Looking at her funny when some of the other coping, such as ear plugs, if done in public were somehow “wrong?”
  • Interfering with previous medical care in past years?

• Support the decisions that she (or he) is making within the limitations that s/he probably has to make them, whether it's one you would make for yourself or not.
  

Remember: It's their body—their disease—and their future that they have to keep in mind when weighing all the factors. You can say, for example, “just have a nerve block.” Well, the RSD affects my entire right leg. There are hundreds of sympathetic nerves. Also, for example:

• I have a manic/psychotic reaction to steroids, if they are used.
• They have to hit exactly the right nerve of hundreds of perhaps thousands of nerves
• 50% chance, if that, that it will work
• If the needle is inserted even slightly improperly, I could end up waking up with Stage IV, full-body RSD.
  
• I have a severe iodine allergy.....as in anaphylaxis....
  

I am the one who has to live with the consequences......on the other hand.....

• It could work, and I could find relief. 
• No garuntees. But relief would be nice. 
• Just please, please, don't tell me what to do!!!

But don't become an un-paid caregiver either: no one wins! If you find yourself in this role, a gentle, but honest and firm conversation about what you can/can't or will/won't do each week is best for both parties. Don't leave until you're both clear on what you can/can't do. Stick to your boundaries, or you will end up resenting the relationship and will find yourself dodging the other person, or “hating” them..........and yourself.



Be honest. Be a friend. But if your friend ever offers to pay at the movies or fast food, graciously accept and say”Thank you,” rather than argue about how they can't afford it. It can hurt, and ruin someone's long-awaited way of feeling like they are “finally giving back.” When you are broke most of the time, it can feel good to treat for a change, even if it sets you back!