Wednesday, March 27, 2013

"Rubber Ducky"~Ernie from Sesame Street

With MdDS comes challenges with water.  I've found this out in many ways.  Talking with fellow MdDS'ers, we all suffer different ways, but many of us have major issues with water.  For me, even looking at rivers, creeks, bodies of water, makes me feel nauseated.  I typically take showers now because I'm in and out quickly.  I use a shower chair on my bad days for extra support. 
I'm a beach goer.  At least I used to be.  I love the way the ocean comes and goes.  Always moving, always renewing itself.  I love to swim and board.  Last year that was out.  I tried to wade into the water and I was so off kilter that I just gave up.  Just looking at my grandfather's pool was difficult. 
I got over the fact that going into a body of water was just not happening for me last year.  But the most difficult thing for me to give up has been my relaxing bubble baths.  I know, for some this isn't huge-especially if you are a guy, but this has always been my escape.  After everyone goes to bed, I jump in the warm tub with my favorite bubble scent and a great book and just run away from the world. 
The first time I tried a bath with MdDS I literally lasted 5 minutes.  I cried.  I know, sappy, but you know what....I'm not a girly girl type, but dang it I'm a bubble bath girl! Haha.  No seriously, its not just because of the escape.  It helps with with other physically issues.  I suffer from migraines and the warm baths with ice packs on my neck help me.  I've had knee surgery and from 16 years of dance I suffer from low back pain a lot.  The baths help with all of this.
Since my first time, I've tried different things to get myself back in my tub.   I know this sounds totally unsafe, so I suggest if you try this, have someone with you in your home to help you. 
One of the issues I had was that my tub is surrounded by tile.  Tile to me moves.  The lines make me dizzy.  So I turned the lights off.  Easy enough, lines disappeared.  I tried lighting a candle near my sink to help with light, but the flickering of the candle in a dark room disoriented me.  I had to blow it out.  
My husband suggested filling the tub to the right height and then getting in.  Try to breath until the water settles and then don't move.  The water won't wave up to you and you can relax.  This helped.  A Lot!  The only time the water would shift is when I would adjust.
I have an old tub, and with that I slide on the bottom which started making waves too much.  (I don't like the little rubber duckies).  I went to Target and found this awesome pillow mat.  Its a mat that runs along where you back lays and then goes down the length of the tub.  It was $20 well spent.  I don't slide at all.  
I can't read normal books anymore...the spacing and font is too small for me to enjoy books anymore, but as previously written, my Nook is awesome.  I have the Nook tablet which lights up and gives me just enough light now to where I can get into the tub with little light and then get out okay.  
I take my cell phone!  My toilet is next to my tub.  I put my phone at a safe distance on the tank of the toilet so if I need my husband I can call or text him for help.  I must note that I carry my phone everywhere with me now due to times of black outs or severe dizziness.
We also have a vent in our bathroom for the heat.  I closed up the vent and I've learned to leave the bathroom door cracked because if it gets too hot and humid I get dizzy.  
Its taken a lot of trial and error with this.   I had to figure out what works and what doesn't.  There have been times where I've had to have my husband help me get out because I stayed too long or the water moved too much.  Between him and I, I have tried all different combinations of tricks.
So here are all of my steps:
Lay out bath mat and suction to bottom of tub.  Turn water on and fill tub.  Add bubbles when ready.  In the meantime get my towel, nook and cell phone.  When the water is ready, I turn off the lights and get in.  I watch my time.  I usually don't stay in longer than 30 minutes now.  When I start reading, I don't notice the water and I can enjoy my relaxation time.  
I hope this can help some people find some relief.  My goal this summer is to get in the pool and maybe even out in the ocean.  I want to swim again.  It will take time and patience, but I'm going to do my best to get there.   

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