Friday, 16 December 2011

Mind Games

Please forgive for being all around the place. I'm trying to get sleep and rest while I can and then gather enough energy to repeat the cycles. My life's been this was since I came home. I'haven't done much outside of change my clothing and watch the last few days, then its rinse and eat.

I see little elfin tracks on Jane's side of the bed and it makes me feel really good that somehow over the last months I can sleep with her that close to me.Sometimes I'll even wake up with a washed face. It makes me feel, well, appreciative.

This pneumonia really took me out for a month. First part of November through the middle of December. It just would go in hiding for a bit and then come out again.

Al Stewart-"Year of the Cat"

I really don't like that I got this sick and need to prevent it from happening again. That means its time for the nasty swallowing test. I didn't think I'd have to do it until much later on my disease progression but clearly for me this is not going to be the case. I can't put it off because to do so may just kill me and after the last month I've realized that this is not an easy way to go.
John Lennon-"Mind Games"

I was reading HDTrainWreak and I broke down. Stella was reading my blog earlier this month and started a sob fest. Now we're one on one.

In one of her latest blog entries she writes eloquently about her last day  of "not knowing" and all of her feelings. It brought back memories of being tested down at the medical centre earlier this year. If you haven't read the long version, I went  down to get my CAG Repeats. I'd already been diagnosed with HD  several years by then but like a mad scientist I wanted these little numbers that would say so much about my remaining quality of life.
There is a point when two much information sends my mind off the rails. For me, having the blood draw before I was symptomatic would have been one of them. I couldn't do. The other was during the process of obtaining my CAG repeats. That day, sitting on the Malibu Beach with my first official positive genetic test in m my hands, I was an  emotional mess. Even though I knew what the paper said and had read it in the office it was a OMG moment when my whole world seemed to change and it was never going to come back to my pre-tested mental state no matter what the result.

Chrissie Hynde-"Angel of the Morning"
with Cheesy Abba Graphics

It fell onto my girlfriend's lap on the beach to try to get the pieces picked up. I can't blame the  testing centre they can only work with what I presented them with and looking back there wasn't much I gave them to work with. My profile screams "closed minded Brit" or as Jane later described one tester "She seemed shocked a self described British librarian aide could step off the paper into her office."

Elton John, Billy Joel - "Piano Man"

Yet that's exactly what I did. From that point onward it was me versus them.I'll be damned if I choose to work with them in their treatment of me. I basically gave them the therapeutic middle finger, There was a period of time when I dreamed that the lab found me so hard to work with that they wished I canceled my upcoming visits. This war got personal, quickly.

Human League-TOTP -1981-"Love Action"
There is only one loser in an initiative like this. 
The Huntington's Disease patient loses
Every single time.
"I believe, I believe what the old man said
Though I know that there’s no lord above
know I believe in love I believe
I believe in me, I believe in you
And you in truth though I lie a lot
I feel the pain from the push and shove
No matter what you put me through
I’ll still believe in love"

Techno Trance - "Tainted Love"
It is so easy. with diseases of of the mind, to let them them take control of you. This is something we need to be constantly aware of.  I know for myself, it can grab me for days before I realize what is happening.Then I have to have to back up and repeat my actions with the appropriate actions and frame of thought.  This sounds like it takes a lot of energy and it does. That's why its so important that I do it right the first time. 

Sometimes it can be as simple as saying, as I did yesterday to someone, "I don't think today is a good decision making day for me."

As for today, I'm actually feeling well enough to go out briefly to the store and grab some soda. I'm completely out of my drink and want to buy some more. Then I'll bathe if I have the energy and eat before going back to sleep.

I'm working to learn to take care of myself and pace myself yet not to take it too easy. Its a hard road to follow.  It is one that last two weeks have taught me are life and death for me. 

Depeche Mode-"People are People"
I'm climbing briefly out of the trenches here for a trip down memory lane. My one and only man-crush David  Garen. My poor father, if I knew the heart attack I was giving him. 

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.


  1. Paul, can you not get the pneumonia vaccine from your doctor? As soon as I was diagnosed with leukemia, I was given the vaccine. You only have to get it once every 6 years. It might be a good idea for you, since it seems the virus really knocks you for a loop when you get it. Sending love and hugs.

  2. GrannyJan, I thought I had received the vaccine but that this wasn't covered since it was misdirected food. Thanks for reminding me. When I call to make an appointment Monday, I'll ask his office about the vaccine.

  3. For those interested I heard back from my doctor. Aspiration pneumonia is not covered by the vaccine.