THIS WAS POSTED ON FACEBOOK.....I THOUGHT IT SHOULD BE POSTED HERE;
Do`s & don`ts when dealing with someone with Chiari ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Don't assume because I look well that I feel well. Looks can be very deceiving. Many days I look great, but I feel terrible. ...Don't tell me that you know how I feel. No ones knows how anyone else feels. Two people with the same disease may feel totally different. We all have varying thresholds of pain, and pain cannot be measured. Don't tell me, “It could be worse.” Yes, it could be, but I do not need to be reminded. Don't decide what I am capable of doing. Allow me to decide what activities I can participate in. There may be times I make the wrong decision, and if I do, I will know it soon enough. Don't be upset that you cannot ease my problems. It won't do any good for both of us to be miserable. Don't ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to. Don't assume because I did a certain activity yesterday that I can do it today. Chiari is ever-changing. I DO believe in God-given, supernatural healing. However, I am choosing to live with the reality of my condition, learning to accept my limitations and spreading Awareness WHILE I wait. I am not lacking in faith, nor am I having a pity-party. Deal. Do learn everything that you can about the disease. The more you know, the better equipped you will be to know what to expect. {For more information go to http://www.asap.org} Do realize that I am angry and frustrated with the disease, not with you. Do let me know if you are able to help me when I ask. I will be grateful. Do offer me lots of hugs and encouragement. However, please recognize that hugs hurt, so be gentle. Don't take offense when something that I say comes out wrong. The words get all jumbled up in my head, and sometimes just do not come out right. Do give me the benefit of the doubt. Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel, Chiari is just like that. Do understand when I can not remember your name or what I planned to do. I want to remember, but sometimes I just can't. Do continue to invite me to all the activities. Just because I am not able to bike ride along with the gang, does not mean that I can't meet your for the picnic at the end of the trail. Please let ME decide. Do understand that sometimes it is so difficult... my 'wanter' and my 'rememberer' and my 'dooer' get all screwed up with my 'energizer' ! * * * Thank you so much for reading this and for your understanding. I would hug you right now! * * * ~ ~ ~ ~ ~ ~ ~ This letter was written and posted on the internet with no author revealed. I thought for those of us who suffer with chronic pain that I would pass it along for you.