Communication - Asking for help can really be difficult. Many times those close to us don't understand the disease and really are confused about how they can help. I have come to realize over the past few years that continuing on the path of healing I need the help and support from family and friends. I am learning to communicate better with them by explaining and expressing what I am going through and enlightening them about the journey to and through AS. Offering this up guides them in a way so they can deliver the kind of support I need. Making it plain and simple has made it easier for me to go about my days.
Recently I went on a day trip to Sedona. I was having a huge amount of trepidation making plans for outdoor activity bc lately my good hip has been feeling painful. I was worried I couldn't make it through the day, or even a few hours, walking around discovering the splendor of this wonderful town in Northern Arizona. I explained this to my SIL who empathized with me and understood my fear. Needless to say, we collaborated together on our plans. We had a wonderful time taking short walks, sitting with gelato conversing, walking around again, sitting for lunch, shopping around, and then taking a half-hour break again with a coffee - all the while enjoying the scenery and companionship. I was able to last a few hours doing what I love. And I wasn't exhausted by the end of the day trying to keep up at a particular pace. In communicating my needs, I was given the ability to endure a day out and about with less effort and worry.
I hope others find a way to communicate their needs and desires as they go about this journey - for me, it has been the key to remaining active and less isolated.
Regards, Rebecca (community moderator)