Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Thursday, April 12, 2012

Life as a Paper Doll


Two days ago, I spent the early afternoon with my mom and two year old daughter.  It was a beautiful, warm, sunny day for  Avalon's annual Spring Festival.  Being the quintessential small town street fair, it was complete with food and craft vendors and a tiny petting zoo. 

I wasn't surprised to see quite a few people I knew there, people who could have been friends if things were different, but today I avoided their glances and maneuvered throughout the crowd so as not to be noticed.  During my drinking days I had became an expert at avoiding people by cutting through alleys and hotel lobbies rather than to walk down main streets.  This time though, the motivation was very different.  Rather than hiding from those who may have seen my drunken antics the night before at the local bar, I simply didn't have the energy to smile or speak and didn't want anyone to misconstrue my attitude as personal indifference.

My heart felt heavy as I watched parents of other children in my daughter's toddler pre-school standing together chatting and laughing as their children played with one another.  I would loved to have been part of the group, but laughing expends too much of the very limited energy I have.  My daughter held my hand as we  slipped past the group and her little head craned to see her classmates.  After we passed them, my daughter waved her hand and quietly said "bye bye".  My heart sunk and I felt like the worst mother on the planet. 

When I thought I couldn't possibly get any more depressed, I looked out into the harbor and saw Perdida, in my mind, her two, tall masts, her teak trimmed cockpit combings all upon her beautiful turquoise hull, floating so gracefully in the harbor as I had seen her so many times before.  Now the tears began to well.  Images of my life while living aboard her scrolled through my mind.  I tried to stop them but the images kept coming.  It felt as though I were remembering a movie I'd seen.  The person in that movie looked a lot like me but - it wasn't.  It couldn't be.  That person was strong and healthy.  That person was able to pull herself up from our small boat up onto the deck of Perdida.  She was able to crawl around the engine room and reach through the bilges to make repairs.  That woman could grind a winch handle to raise the sails all the way to the top of the mast and even cook a meal while winds howled and the hull pitched.  I couldn't do any of those things.  I suddenly realized that I wasn't a complete person anymore.  I was like a paper doll with only two simple dimensions trapped in a two dimensional world but with a view upon the full world led by so many lucky people. 

My mother had gone to pick up fish tacos at one of the stands and my daughter and I sat near the very small petting zoo (which included two chickens, one rabbit, one tortoise and a couple of lizards) while my daughter reached her little hand through the fence, trying to pet the bunny who never did come close enough.

We finally made it home and my entire body was throbbing with pain.  I snapped a few short words at my mother and lay down on my very familiar couch, which, within the last two years has become a virtual appendage and turned my heating pad on high.  Tears were streaming down my face and self-pity set in for the rest of the night.  I so desperately hope this new medications takes some of this pain away.

Friday, February 10, 2012

My Messy Apartment is Driving Me INSANE!

Are any other Fibros out there sick and friggin' tired of their homes looking like pig sties?  Unless you are fortunate enough to have a husband/wife/roommate who cleans, you probably have an abode that looks something like mine.  Laundry piles up, dishes pile up, dust piles up, etc, etc.  Sometimes when I roll out of bed and walk into my living room I want to cry.  The floor hasn't been vacuumed in weeks, there are toys scattered all over the floor and overdue bills and other neglected paperwork piled on practically every surface.  I can't lift the full laundry basket so I have to wait till my husband is around or make several trips to the washing machine with small arm-fulls.  By the time I've done that, I'm spent.  On a good day I can recuperate for an hour or so and continue with chores.  On a bad day, that may be all I get done.  I may not even get the clothes from the washer to the dryer.

I know other ME/CFS/Fibromyalgia sufferers can understand how incredibly frustrating this is.  I was never a neat freak by any means, but a messy home gives me so much stress and I don't think the excess dust does me any good either.  If I had the money, I'd certainly hire a cleaning person once a week or so but since I can no longer work, that's out of the question.  I just have to do what I can and put blinders on for the rest, although that's a whole lot easier said than done.

Sunday, October 16, 2011

Reprieve of Sorts

My husband has moved back to our apartment.  We discussed our problems and made some compromises.  I won't regurgitate the tiresome details. 

It's been about nine days on the lowered doses.  Now I'm taking 40mg Cymbalta, 150mg Welbutrin and 2mg Lorazepam.  I've been feeling better than average the for last three days.  Tonight I'll take 20mg of Cymbalta rather than 40mg.  The thought gives me some definite anxiety since I do not want to repeat the experience I had ten days ago, but I'm so anxious to get  this crap out of my system and anxious to start the food allergy investigation.  I'm hopeful, but hesitant.  I'm so worried that it won't change anything and I'll become more desperate and hopeless than I am even now.  As each experiment fails, I think more and more that this disease will be my lifelong rival and I begin to plan my life as a disabled person. 

My daugher, who is now ninteen and a half months old, has learned that sleeping requires closed eyes.  When my husband or I tell her to go to sleep she lays her head back and with obvious force, squints her eyes closed. She reaches a tiny hand to her eye and so gently traces her closed eyelid over and over with a pointed index finger.  She cannot see but can only feel her closed eyes and imagine how she may appear as she sleeps.