Sunday, August 30, 2015

   Garden of Mazes


    So I am sitting here today just thinking. Really. Thinking. The house is clean. The family has been helping out more. It’s not insanely hot out. I am surprisingly not in much pain though I am on a new short term pain med…  My cats are asleep on my legs. The purring is relaxing. What could I possibly find to write about today?
    And that’s the thing. This is today. The quintessential GOOD day we all wish for. They happen too. Different frequencies for all of us. Some get them weekly, some monthly. Some people get a run of good days in a row! Right now, this is my first in a while. So I am thinking: What do I do on my good day?
    You wouldn’t think this is such a difficult question would you? Get out and have some fun seems to be the obvious answer. And I have done that in the past! Gone on day trips with friends. Like the time we went to Seabreeze! And I had no parking pass back then so by the time we got to the gates I was a drippy, sweaty, out of breath mess who could not feel my legs. Literally. I was walking by rote memory. And sat down at the first chance I got and became that umbrella Nazi for the day moving my chair and then the entire table in an effort to ‘follow the shade’! I did win some of the games we played but went on no rides and couldn’t really enjoy the water park. And I took time to recover. Days.
    So I’ve tried the calm relaxation outing route: Shopping. Bear in mind that strolling a mall looking at stuff, maybe trying things on and stopping for a latte is what is usually portrayed as a ‘girl’s day’ shopping. Yeah. Usually. Not around here apparently because these ladies had agendas. I am surprised they did not have maps! I will out myself here. I am a shopaholic. Yes it exists. It is just like alcoholism and can get waaaaayyyy out of control. I no longer carry credit cards and try very hard to stick to budgets. So I know how to SHOP. I also no longer really enjoy it. I am hard to fit so trying anything on is a hastle. By the end of this trip, we had been in almost every store in this mall; a NEW, BIG mall. And I spent my budget-on a large framed piece of artwork that I then had to lug around. We did stop for lattes twice and I did get to rest when they all tried on clothes at every clothing store on the planet, but they picked out stuff for me which never fit and was a huge energy drain trying to get in and out of. That also cost me time to recover. And no one thinks of the pain that crops up over the next three days or so.
    Then there are the good days we think ‘I’d better get stuff done!’. That little mantra we all want to believe because we all have that huge ball of guilt hiding somewhere inside of us. That mantra is not good. Let me tell you right now it was stuffed into us sometime between birth and age 5 when our moms were so sleep deprived they gave in to the evil elves in their heads and planted these life ruining ideas. Now that we are sick, these evil ideas tell us to use up our good days cleaning or running ourselves ragged getting stuff done we’ve put off because, well, Sjogren’s! I’ve done that and am honestly thinking that now. The family room needs some work. But I also know how much that has cost me in days as well.
    So the last option would seem most logical to most. Relax. Read. Draw. Enjoy nature. Watch a movie. Don’t do anything that will cost you days to recover from. You are enjoying a rare pain free day! Really enjoy it!
    Here’s the thing: All of us with these diseases know all too well that it doesn’t matter. Whatever we choose-we could very well wake up unable to move again tomorrow.

                                          So how would you choose?

Sharilynn Battaglia

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