Friday, 20 January 2012

Seize The Day

Today has been filed with ups and downs. I must say the ups are worth the downs.

I'm still drowsy and dopey from the phenobarbital but the side effects are wearing down. I only took  one nap today and stayed up later than I expected although I'm very tired.

Eurythmics-"Here Comes The Rain Again"

My wife says I've been quiet lately and I have been. For the first time in my life I don't feel like like a man who has Huntington's Disease, but instead feel like "that Huntington's Disease man.". Its one of those little word games we don't  really think about until it effects us. 

I truly feel like my body is betraying me. As I told my psychiatrist I don't feel like I own it anymore, but have it on lease. 

Talking Heads-"Wild Wild Life"

After spending some time on Twitter and enjoying the new box I purchased for the telly that lets us view streaming content such as Hulu Plus and Netflix, I put on Frankie Goes To Hollywood and jumped in the shower to get rid of the last of hospital smell. Somewhere between Welcome to The Pleasuredome

Frankie Goes To Hollywood-"Welcome to The Pleasuredome"

And Ferry Cross The Mersey
Frankie Goes To Hollywood-"Ferry Cross The Mesey"

I had a seizure. Right there in the shower. I must have fallen against one of the walls for Jane heard it and came in from the kitchen where she was cooking dinner.

Julian Lennon-"Too Late For Goodbyes"

I was okay, not even a bump on the head but all I remember of the hours beforehand was the music. It reminded me of the fact that music appreciation is the one thing a person with Huntington's Disease does not lose. 

The Human League-"Blind Youth"

I've had this song stuck in my head since yesterday evening. This reply to Johnny Rotten's remark that The League is just "Trendy Hippies" has been replaying in my mind to the point I found myself walking to the rhythm of it. Its a good think I didn't have the Peel Sessions version in my head or I'd be running everywhere. 

Another side effect of this medication is double vision, for example I see four hands in the screen capture above.  I am having to rely on my touch typing as I can't view to keyboard or the lines on the screen. This time of night everything is double. I even see two Jane's next to me. 

I'm trying to eat but its hard to aim the sandwich in my mouth. I wonder how blind people do it?

U2-"Stay Away (Faraway So Close)"

This has been my theme song lately. The closer Jane gets to me the more I find myself pushing her away. It hurts so badly. I know that part of it is I'm uncomfortable with her taking the care-taking role. Its hard  seeing her in two totally different positions. For example, when I had the seizure in the shower I w as half bathed. Now somehow I had to get the shampoo out of my hair and soap off the left side of my body. After letting her rinse me off (I was in no condition to do this) how can I then go and see her as my lover? Its a very hard transition, yet one at least now I'm able to make.

U2-"A Sort of Homecoming"

I know the time will come when something will cross that line and I will no longer be able to make the transition. That makes me sad. To do that will be to deny part of her personality. 

U2-"Some Days Are Better Than Others"

So despite all of this today I actually spent the several hours celebrating. Jane was notified today by the clinic that she her pregnancy test came back positive! Of course, we had to make all the obligatory telephone calls to relatives before we settled down to celebrate. 

Kool and The Gang-"Celebration"

Then it was Viagra time.

Robert Plant-"In The Mood"

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  1. Congratulations on the pregnancy, I know it's what you both want so badly. I'm sorry you are having to deal with the seizures, Keely had a lot of them, but was never self-aware enough to realise she had them, thank goodness. I wish we lived closer, I would come and be your carer and leave the loving to Jane. Just remember how much she loves
    you, and don't push her away. She took this on willingly, out of her great love for you. Sending you both much love.

    Jan, Victoria, BC

  2. SO many ups and downs! It's a crazy mad world, Paul. I was absolutely moved by this post and understand lots of the things you are going through. I thought the viagra was TMI... but it's nice to wake people up sometimes! I do the same thing!
    Much love and healing, and fertile happy thoughts to you both,