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Spotlight: A Day in the Life

Share what a day in your life living with MS is like!

  1. My day starts off with, when I get up.
    Sounds a little silly but to me it's a reflection of how I feel about life now.
    I used to get up at the crack of dawn for decades.
    I worked, I exercised, I enjoyed life with various activities.
    Now, my life has changed a lot. Pain and terrible fatigue make a huge difference. Along with ulcers, IBS, diverticulosis, lack of sleep, etc...the list goes on.
    Now, if I get enough sleep, I get up early and sometimes can get a few things that need doing, done.
    If I haven't slept well, if I am sick and in a lot of pain, I point the remote at the tv and I stay in bed and rest, doze, read, sleep.
    I don't care about chores, they'll still be waiting in a day or two or three...I'm not a fanatic about cleaning anymore.
    I don't care if things are not in place and looking neat.
    I sometimes don't leave my house for a week or more, I only go out now when it's absolutely necessary, to the grocery store, library, appointment, etc.
    I rarely smile anymore, I'm not what anyone would describe as a happy person.
    This is what 35 years of MS has done to my life.

    1. my day starts with a gut wrenching hug, before i even open my eyes.the Next quest is making it to the bathroom on my wobbly legs w/o an accident. so far so good (usually). now to the coffee pot, pour a cup and hope i can walk steady enough to enjoy the entire cup and not have to clean a trail of brown drips. Still not frustrated for this is routine and I know whats to be expected. now that I'm feeling pretty ambitious I make a goal on a worthwhile task, you know laundry, dishes etc. On a really good day I'll plan a trip to the store, sit in the car and look into the entrance until a electric cart becomes available,hopeful that the battery is good. With all good intentions stating to fade its time to consider a nap and then I'll feel like doing more. wishful thinking that is. That sums up a typical day, so much to do so little ability.

      1. Wow, this all sounds so familiar! I find that breaking tasks up helps, and not trying to do too them all at once, and not all in one day. I make a list (well many to be honest) and list say five or six things I would “like to do”, then I’ll pick my top three, I call them the “absolutes”, meaning no matter what, this or that must be done, for example a doctor appointment, or grocery shopping. Whenever I can have any control whatsoever over appointments or tasks I spread them out, and never back to back or if possible, not in the same week. I am always writing notes, using Alexa, a write on wipe off board, or my phone iPad, etc. to help me list things, and I’m constantly revising them. I am learning that who I was before is not who I am now, and it is difficult to accept, but I’m learning to deal with it. I wish you all the bets.

        1. Thanks for sharing your ideas. All very good by the way. I think allowing flexibility in our lives is the key and just as you stated, "who I was before is not who I am now." Learning to deal with what's real so that we don't set unrealistic expectations helps too. Good job!.

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