Tuesday, January 31, 2012

The Never Ending Day of a #spoonie

Today is a day I feel will never end.  So much happening and so much logistical work.  Hubby wasn't sure he could fix the 2nd problem with the truck, so I took #2 to work, so we at least had her car.  But now....Hubby fixed truck - YAY - he's at work, and I'm juggling Dr. appt. with #4, kids that want rides after school, #3 has to get to college to get at least one of his books, and also check with financial aid because his book voucher has not arrived, then to pick up #2 from work at 5....OH SHIT (excuse) and remember to pick up grand child (2A)  at 3 ...key word is "remember".  Scarry thought.

Since none of this was planed or expected, my body and mind is completely overwhelmed.  Thank God my husband is a true gift in my life.  He is patient (most of the time...it's hard with a #spoonie), kind, and understanding of the help I need, even if it seems trivial or simple.  A phone call to him, I completely dump all the anxious thoughts running through my head.  He listens and gives me a timeline to work with for the day....phew......my head begins to slow down a little bit.  Now for a simple Lifetime movie while I fold some laundry.

One day in the life of a #spoonie.

Spoonie:  A person living with a chronic illness that is painful and or causes complete and utter fatigue.  The "The Spoon Theory" was told by Christine Miserandino on www.youdontlooksick.com to explain what it is like to live with this type of chronic illness.  We must manage where we put our energy, and what tasks we do.  Please check out this explanation, it exlains it perfectly.  There's a purple tab on the top of the page that says "The Spoon theory"

ahhhhh writing is so theraputic!  God is Good, and I am truly blessed!

Sunday, January 29, 2012

My 50th Birthday Present ~ From #1 and her Future Husband

      #1 is 25 years old, and is an amazingly beautiful young lady, and also very thoughtful. Apparently her and #2 (who is 23) wanted to throw me a surprise 50th Birthday Party, but I ruined it when I decided to scroll through my husband's text messages and saw the text about this “surprise party”. I don't care how old I am, I am not the type to like big to-do's about me. I like to spend my birthday's and special days with my family – quietly, with everyone getting along, dancing to old jazz and blues music, Frank Sinatra, and just having fun with each others company.

      #1 kept saying “But Mommmmm it's your 50th Birthday!” and I kept insisting it was okay. None of us are in a position to be doing much of anything. However, in my birthday card was a note that said she and her “to be” were taking me and my hubby to the Iron Horse in Northampton, MA. ( http://www.iheg.com/index.asp) to see “Johnny A.” (http://www.johnnya.com/) who's like a jazzy, blues kinda guitar player. It was so thoughtful of her. She wanted to find something both hubby and I could enjoy, and she succeeded!

      I could never have imagined it would be so much fun on so many different levels. Having ADHD helps with that! Or should I say ADOS (Attention Deficit Ohhhhh Shiny). Part of my personality gets nervous going new places. It always has, but I've learned to push through that part, but it's always there, laying in waiting. I made sure I rested well during the day so I had enough energy to get through the evening. As I started getting ready, I realized how much fun it is to get gussied up. I don't do that much any more (which is fine, I like the artsy, low key look now), but I realized it is fun to do once in a while. I carefully primped my hair, put on make up, a nice pair of jeans with a blouse, high heeled boots, and of course, my “hooker earrings”. Back in the day, I loved to wear long, jingly earrings, and one of my bosses (before sexual harassment policies) would say “Oh Anne, I see you're wearing your hooker earrings today”. I cracked up every time, no offense was taken, and now when I wear those long, dangely earrings I fondly think of Brian.

      As you can imagine with 5 kids and two grand kids, things rarely go smoothly, and tonight was no exception. After a few complaints on us not being available for car rides, helping people find things, we finally got to #1's home. She was all gussied up too, and looked incredible. Our #5 was babysitting grandson (1A), shall we call him?? And then we were off.

      Northampton, Massachusetts, is a very artistic town, with artists, musicians, an eclectic mix of restaurants and cafe's. The main street is filled with traffic and pedestrians; a very lively town, to say the least. Of course parking was an issue, but we found a spot just off of Main Street, and walking, along with the rest of the town felt good. It was a little chilly, but I felt so alive! Down another little side street, and there we were outside the Iron Horse. Poster's covered the window, the entry where you turn in your tickets was small, but then the whole place opened up, if you could call it that....it was wall to wall tables, booths along the walls, and a stair case heading up, led you to the balcony area which was also filled with tables and booths. The place was packed! And loud with everyone speaking, the waitresses seemed to float through the maze of tables and people as they balanced trays of drinks and food.

      Of course, one of the first things I start to do is check out the architecture in the building. Tin Ceilings, old wood beams and pipes showing, wood floors with a lot of character in them, if you know what I mean. None of the tables and chairs matched. Then my second favorite thing to do – people watch. There was the woman wearing a turquoise outfit who danced as she walked down to the bathroom, obviously having a great time and feeling the music; there was the man wearing a black leather cowboy type hat. Each person was unique to themselves, and yet, there was an energy of unity.

     While my husband and son in-law to be were tapping their fingers on the table and their legs to the music, I was busy noticing so many little details, like how fast Johnny's fingers moved on the guitar, and the bass player, holy mackerel, his fingers were so long, and the drummer was in a world of his own, totally engrossed in his drumming, yet they all connected as they played. It really is amazing to see talent like that. The whole experience brought me back to my 20's. The music was LOUD. It was a combination of jazz, blues, and rock, and it just took you away to a peaceful, free space in time. As we were saying good bye to #1 outside, the drummer asked us to keep an eye on his van as he went in and out loading equipment, people talked about the show and what they were doing afterwards (I was going home to BED), and when he was done, he talked with us, for a while; it was so cool. I haven't felt like this in a long time; I think I/we need to get out more often! Of course my legs were tingling, my limbs were limp, and I was totally exhausted (thank you fibromyalgia!), but ironically, I felt alive. Unfortunately, I ended up skipping church and Sunday school, my body really needed rest. Was it worth it? Hell Yeah!   AND I picked out where I want to sit the next time we go...Great view for performers and people.

Wednesday, January 11, 2012

Holiday Crash

Well, those of you with a Chronic Condition know the cycle push and crash.  I certainly pushed, gently, through Thanksgiving, and more for Christmas.  To top it off, for the past three years, this year included, I organized the Oplatek Dinner at our church, St. Joseph's National Catholic Church.  That just pushed me  way over the edge of the cycle.  For the first time ever, I questioned was it worth it.  Thanksgiving and Christmas yes, as I monitored the pushing.  Oplatek was just full steam ahead.

Did I/we have fun?  OH MY GOSH Yes!  But I have never felt so much pain, diiscomfort, and complete body exhaustion.  Here it is Wednesday, and I am just beginning to think I'll tackle some of this bedroom, and maybe, just maybe, get some pictures up here!  What is the Oplatek Dinner?  I'll either write another blog on it or put it as a page?  Haven't played with that yet.  P.S.  On this Oplatek Dinner adventure, I had the help and adventure with two very good friends.  I'll call them Gypsy Queen and Traveling Rose.  You'll hear more of our advenetures in the future.