People who have CRPS, and those who care for them, naturally focus a lot of attention on pain and how to treat it and live with it. Another natural outcome of dealing with CRPS is understanding how it can isolate you from the rest of the world. CRPS, or any chronic debilitating illness, changes your life, whether you are a patient or a caregiver. It can prevent you from doing many of the things you did before- going to work, meeting friends for dinner, going to a concert or the movies, and so much more. As a caregiver for someone with CRPS, part of the value you can provide is identifying your support network and understanding how to effectively engage them to minimize the isolation. Instead of going out to dinner, you might host pot luck parties at your house. This brings friends to you, reduces the need to cook, and keeps you connected with those who care. Instead of going to the movies, have people over for a Netflix movie or binge of your favorite series. In our case, instead of work, my wife Lee and I decided to create this website as well as the CRPS Seattle Support Group. It allows us to use what we have learned over the years – dealing with the illness, medical providers, treatment options and the overall impact on our lives – to help those with similar circumstances. Just the process of putting together information for others is gratifying. It demonstrates how important our attitudes are for improving health because we find ourselves so grateful for input, energized by the effort to help someone else, and focused on next steps, next meetings, new insights and new connections.
Lee has been increasingly involved in a number of online communities for CRPS patients. Not only has she connected with so many people with whom she can identify, and gotten helpful information from many, but she has been able to provide help to some as a result of everything she has been through, positive and negative, over the twenty-three plus years she has dealt with CRPS and its systemic complications.
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