Tuesday, May 15, 2012

Ocean Beach and MS

Remember all my bravado about not being ready for a wheelchair?  Well, my brain may not have a say about it.

Ouch.  A random post I came across.  Weird huh?

Anyways, my physical downfall has caught me completely off guard.  I went to the beach last week on the bike, over 10 miles and felt GREAT.  Then we walked the beach on Friday, being careful not to over-do it, or so I thought.

Annie is holding her own against her boyfriend Oloney.  She's been afraid of the waves, but not any more.  Hank refuses to be pictured on the blog so this will have to do

My hands are confused putting the key in my door.  Lifting the second leg onto the bed requires using my hands to get it up.  The need for sleep is ... the weirdest sensation I've ever felt - it is not possible to deny.

The one night that Annie kept asking to go outside, I simply could not go out my door, without bouncing from wall to wall.  So I set out newspaper on the carpet, and told her to go potty there, hoping she'd understand.  I couldn't even stay awake long enough to see - I fell into bed, arms pinned underneath me, too exhausted to get into a more comfortable position.  When I woke up in the morning, I saw that she had peed on the papers!  I was so proud of her.  And then so sad for her.  I picked up the peed upon papers and hung them over the bathtub, hoping to train her to go in the tub, both pee and poo for my bad days.  My neighbor down the hall has offered to take her outside when I can't take her outside, but I was not able to remember that in the condition I was in.  Everything shut down.  I didn't pee, or poo, or eat, or drink.  I slept like a rock, completely asleep before I turned onto my side.  I texted with my son here and there, about me traveling to Denver maybe but it would not have happened if I got honest with myself.  He called me on Mother's Day, and I lied about having to go play cards cause I couldn't maintain the cheerful I am fine tone, and I wanted to go back to sleep.  I'd wake up to listen to Barf and Annie fighting with each other and go right back to sleep, glad they were occupying themselves.

Hank tried to help, but all he could do was just stand by, and he finally realized there was nothing he could do to help, so he spent most of his time looking for a job.

Why do I lie?  Because I'm trying to convince myself I can do it.  I'm sorry, my son.  When it comes to MS and you, I can't seem to tell the truth.  I don't want you to know how horrible it is.  I don't want to scare you.  I want you to keep climbing rock walls.

I do not think over-doing it was the thing.  I think it was time for a flare-up.  Cause it's over just as quick as it came on.  I walked Delores Park twice today and didn't feel a bit of physical exhaustion.

I've never felt such an over-powering need for sleep.  It may well have been my first true fatigue flare-up.

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