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    Having a whinge

    Well, that was a day and a half. Fundraiser for my mum's school in a garden. She's the principal. Ladies who lunch High Tea affair.

    I was dubious about my athleticism to start with, but sucked it up, and boldly ventured where no person without the ability to walk properly should go.

    For "garden" read great big five acre paddock. And where was the tea tent? Go on, guess. At the furthest point, half a mile from the house. And where was the only toilet?

    Back in the house. Trust me, I was looking at the foliage like a horticulturist, hoping there was something bushy enough behind which to hide. No such luck.

    Held on until I thought better go now or there will be a complete disaster. So back I stagger, under what felt like the intense scrutiny of the lunching ladies, all hundred of them, not that any of them offered to help.

    Why oh why don't people have railings on steps? Or at the very least walls on their houses? Had to lean on the screens on the windows. Nearly fell through, but no! Got there. Seriously thought of staying there.

    Ah, but the return journey beckoned.

    I can sort of go up, but I really cannot go down stairs without something to get a grip on. Wandered through the house, found another exit, with a whole door to clutch and made it back to the table, with several rests on the way.

    "What took you so long?" Um, dunno.

    And because I'm obviously not in A1 condition and a captive audience, literally a dozen people felt the need to share their own medical nightmares, legal problems and marital issues.

    Wasn't even a particularly nice lunch.

    Learn to say "no", learn to say "no, learn to say "no".

    #2
    Ugh. That sounds like an awful time.

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      #3
      Bladder and bowel control...the "forgotten" challenge.

      When planning any outing, bathroom needs are at the top of my list and remain one of the biggest challenges. I flew to Cleveland, OH last month, from Phoenix, AZ. Long flight, plane change on each leg. Each flight had me in the very first row of the plane, aisle seat. To get in the seat to begin with is full of challenges and airlines set the standard for dealing with the disabled.

      The bathroom was about 5 feet away but may as well been 5 miles. I was not going to be able to get to it and use it...period! So bladder and bowel control for approx. 5 hours of flight time each way. I had to wait to get in the terminals and used the private bathrooms...using a plastic bottle I brought with me for the purpose. No bowel movements allowed because I can not get on/off a toilet unless it is "super accessible". Then when I get to my friend's apartment, my wheelchair won't fit through his bathroom door. I would not be able to get on and off that toilet anyway because it's too low, no bars/rails, anything. I knew this going in but thought I would at least have "bladder privacy".
      Thanks to a super accessible Starbucks restroom, I had my bowel movement without incident.

      When talking about the trip to family and friends, this huge challenge does not even cross their minds.

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        #4
        What a miserable time. I'm sorry you had to

        Endure that, but you sure are brave for doing it!

        I think it might be okay though for us to say "no" to things and to not have to endure things like this. I don't think it's a failure or giving in to our disease, I think it's just taking care of ourselves.

        I recently came to the conclusion I need a wheelchair if long periods of walking and standing are required. I feel ashamed but am trying to remind myself, that this action is reasonable and an act of loving self care. With a wheelchair, I will be able to enjoy museums and not be in utter misery.

        It's a struggle. We want to be normal, we want to fight against this MonSter. But maybe it's okay to take steps to make things easier on ourselves.

        Comment


          #5
          Job
          Your humor always makes my day.

          I too have become adept at looking for appropriate foliage a in my rural setting.....

          It's great to see the humor in our situation!

          J
          Diagnosed with MS spring 2010; Still loving life

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