Okay so I was going to keep this blog more along the lines with how I live with MS etc. but here is another thing that came my way and I wanted to share it because it is just the thing that needs to be out there for others to read....
Don't Assume ) The MS Do's & Do Not's
Don`t assume that just because I look well, I feel well. Looks can be very deceiving. Many days I look great, but I feel terrible.
Don`t tell me you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different.
Don`t tell me about your Aunt Mary, her MS and how well she managed in spite of it. I`m not Aunt Mary, and I am doing my best.
Don`t tell me, ``It could be worse. `` Yes it could, I know this and don`t need to be reminded.
Don`t decide what I am capable of doing. Let me decide what activities I can participate in. There may be times I might make the wrong decision, and if I do, I`ll know it soon enough.
Don`t be upset that you cannot ease my problems. Just be there for me. That`s the most you can do. That`s the most I expect or need.
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 again today. Multiple Sclerosis changes from day to day.
Don`t tell me about the latest fad ``cure.`` I want to be cured more than anything, and if there is a legitimate cure out there, my doctor will let me know.
Don`t patronize me. It is humiliating and helps neither of us.
Do learn everything you can about the disease. The more you know, the better you will understand what to expect.
Do realize I am angry and frustrated with the disease and the limitations it puts on me, not with you.
Do let me know you are available to help me when I ask. I`ll be grateful. Offer me lots of encouragement.
Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. That again is the way Multiple Sclerosis is.
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 I can`t meet you for the picnic at the end of the trail. Please let me decide.
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2 comments:
Hey Kimberly,
This should be made into a pamphlet that those of us with MS could hand out to friends and loved ones!! It's everything we want and don't want from those who care about us. You outlined it perfectly; well done!
Thank you and what a great idea! - I actually got this from someone else on a support group who did not have the author's name either, and when I read it I knew I just had to copy and paste it to share with others.
Thanks again!
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