When I am Fading as Fast as Summer

 Today it is still summer, but school has begun in many places, and will in 11 days here. 

I am as always, still reluctant to give up the warmth and water and grandchildren time that is summer to me. I usually opt in for parades, river time and then give myself time to write. 

But I am also still sick, so summer has also been more time at home, more time in bed, more time getting ready and then not going, or leaving early. Even when grandchildren are involved  

I am never one to say no to a child's birthday party, but I stayed home from my granddaughter's third birthday party. Even now the tears spring into my eyes at the thought.  I got up and just showering and getting dressed took all my energy for the day.  I remembered 15 months ago, at the same place, and realized that that time I couldn't sit on the ground, so I brought a camp chair.  Now I would fall sitting down and not be able to get out of the camp chair.  Even my dining room chair is lifted now and my wingback chair, and a love seat and the bed.  My home accommodations allow me to pretend to be OK, but a lakeside birthday doesn't.

Then last night I took the 7 yo to swimming lessons, and then climbed in the pool to join her for family swim, but my back locked up from cold, even though it actually was pretty warm in the water and after 45 minutes of trying to look ok, I got out and left her with her Dad and Grandpa while I turned on the heated seat in my van.

I have been left at a blank wall by my personal care physician and my neurologist, and everytime I think of the argument I need to have with them,  and I sit at the computer to write a letter, I fade out and can't think.

I don't know what to do or who to see and all the news makes going to medical places seem foolish at best, but this life is only a half life and I need to keep pushing.  The two labels that seem to match most of my symptoms are Parkinson's Disease, and a fairly innocuous sounding, but horrible "Stiff Person Syndrome."  If you have personal experience with either, I am sorry.