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I'm still me.

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  • I'm still me.

    Being just over 1 year post diagnosis, I realize I'm a relative newbie to this. There is one thing I know though and that is I'm still me -- still stubborn, still independent, and still, well, still me.

    I've also realized that the most frustrating thing is not the fact that my body doesn't do what I want or that my meds make me sick, or that I need a rest after simply getting dressed for work -- it's interacting with people who just don't get it. People who treat me differently, assume I can't do something, or think their helping by trying to do everything for me and then get upset with I tell them to "please stop."

    I know I'm not the athlete I was. I know I can't do everything I did the way I used to. I know this. What people need to understand though is I'm still me and I can still "do." Don't try and coddle me and feel bad for me because my body won't do what I want it to in the studio. Help me figure out a way that I can do what it is I'm attempting. If I get frustrated, remind me to breath and then help me figure out what's not working "right."

    If I say I need help with something, don't just do it for me. Help me do it. Ask what you can help me with, not what you can do for me. If you ask if you can do something for me and I politely decline stating that I've got this, please take my word for it and don't ask three more times.

    And most of all, please do not just assume I can't do something or won't want to. I guess the worst part is seeing friends and family post pictures of place and events they go to. Before I was sick they would have invited me. Now, that rarely happens.

    No worries, though, I'm good. Just needed to take a moment and rant a bit. Thanks for reading and I hope everyone is out there making the most of everyday in whatever way makes you happy.

    be well,

  • #2
    Well said, AZgal. When it comes to being left out, I've learned to do the inviting and arrange the events. Will said events include a 12-mile hike? No. But if my buds arrange such a hike, they know I'll catch them later at something closer to my speed. Needlepoint. Oh, I kid! (Really, I'm joking, that would be hard to do with fumbly hands, ha.)
    Dave Bexfield


    • #3
      AZgal, I felt compelled to reply. I am nine years post diagnosis. Your post brought me right back to those early years when we all were trying to figure out how to live with me and my MS. I've learned how much of a process it is for everyone we know....close friends, family, co-workers, acquaintances and total strangers. Now I can accept that, but at the start, I just needed to focus on myself, and really had little patience for those who wanted to do for me without asking if that was what I wanted. And then getting offended if I did not take their help. I remember how I recoiled when a friend told me my shoe lace was untied and then started to reach down to tie it for me!! Arghhhhhh!!!! What are you doing to me!!!!! Then on the other hand when friends kept insisting on carrying something I was very capable of, they turned around and said " Ok, so why don't you carry all our stuff?" Hang in there, (1) it sounds like you are keeping it in perceptive, and (2) it'll get better..... your peeps will eventually adjust and see YOU through all the MS crap, and for those who have a harder time of it, you will develop your own way of dealing with them that settles with you. My friend who wanted to tie my shoelace now bikes with me regularly, doesn't hover when I negotiate getting on and off the bike, doesn't anticipate I can't go with them on any event....but is now helpful in figuring out how I can participate...after I bring it up. And if I tripped on my shoe lace, she probably would laugh and ask me if I had a nice trip!!
      Be thankful. Dream Big. Never Give Up.


      • #4
        Don't give an inch to this crappy disease. It will take what it will take but don't give in. In the early days, after my diagnosis I gave up much too much without a fight. Do everything that you can. Don't give in, don't give up