Infusion Day

Once a month I enter a room where I know and like the people, where I do something incredibly dangerous, but has changed my life immeasurably. I never took any drugs for my MS, for over 20 years.It was pointed out to me by highly trained neurologists,
"You fucking what? You're still walking. You should be dead."
A couple of years ago my MS piled in,  ready to take me out forever. I reached the point where I knew I wasn't going to be able to walk. My father inlaw bought up walkers and a wheelchair to our house. The wheelchair sat in our dining room murmuring, "Told you so."
I knew I was a great candidate for Tysabri. I also knew its downside is fatal. Its very expensive, so they put me with a charity that pays for MS suffers to give the scary good a go. Things were so bad, lethal or not, I was in.
It worked out. They monitor my blood every few months to make sure I'm not cresting the death wave, and I walk better than I have for years. So, infusion it is.

Stream

I'm always up really early. My pooch has me up by 5:30 or so everyday. I'm often up anyway, much to Abbey's surprise. I know she feels that this must make breakfast immediate, it doesn't. 6am has to roll in for that to happen. We spend the hours leading up to it playing in the garden, her hiding her toy and I listen to radio 6 while I'm searching.
This is how i know I'm doing ok. The signal that MS is in the ascendent is when I don't listen to music. I have had months when I can't feel why I should be interested. Even in those difficult months, I know my love for music isn't dead, just muted for a while.
I'm very lucky, I've played guitar since I was 5 and I hear the rhythm in everything. Thats all I do. I listen hard all the time, knowing that there's something glorious coming that I wasn't expecting. Hasn't let me down yet.

Banked.

I hope most of my friends back in England are still asleep, snoozing their way into a well deserved Bank Holiday. Some will have taken a long leisurely weekend, some may have taken the forthcoming  day off as a signal to get trashed on Sunday as, "Monday is mine!"
Why am I up? Despite having lived away from blighty for over a decade, there is a part of me that takes the second bank holiday option seriously. I drink towards the carefree Monday that doesn't exist in America, with some abandon.
Yes its 2am where I am, I'm doing this for all of you. Sleep on my friends…..

Songs and such.

I play my guitar and sing the songs I have written over the past couple of years, everyday. It occurs to me that I should record them, and find somewhere to perform them. The new song is still gestating.  I have 4 or 5 I've never put out, that need to be freed. To make sure I get on with it, I'm going to put out the lyrics for the next song I'm going to record. I wrote this one ages ago.

Disaster

I poured coffee in my computer
Does this mean it will run faster?
Did you back up your files on an outboard drive?
Then thats a caffeine disaster

Disaster, disaster
That's a caffeine disaster

Facebooked drunk on Friday night
That my boss is a total tosser
Monday comes, new job to find
That's a resume disaster

Disaster, disaster
That's a resume disaster

Bank holiday one day too long
And I slept with her sister
Now I'm on my own in a darkened room
And my palm is a weeping blister

Disaster, disaster
That's a wrong sister disaster.

We all do lots of stupid things
They don't cover us in glory
Then time goes by and you realize
Thats a cracking bloody story.

Story oh story
Thats a cracking bloody story.

Cheers to Jen, for one of the lyric changes.

Post Fun Apocalypse.

Fantastic day yesterday. Jen and Sue turned up around 12. Jen's birthday is today, so we decided to pre-empt it by drinking mimosas and eating top food all afternoon, laughing our way into nicely pissed oblivion. This was a much better route than the MS comas of the days before. Jen and Sue left, Beth and I managed to order a pizza, eat it and then? Hmm….
I just woke up, with little chance of going back to wherever I was. Hangover is absent, must be all that fruit juice. Reading then, with a coffee kicker and radio streaming from England until NPR's Saturday kick in. Their shows on the weekend are great. Much better than that wittering tilt at the awful of the world, that pollutes the rest of the week. Coffee, right?

Another Crack.

My pooch bleated me awake around 5:15. Don't tell her, but her need to start the day early is incredibly useful.  The last two days washed away into oblivion, so I figure Friday has to be better, right? Though Wednesday/Thursday were at best cack, there was enough going on to make them interesting.
Yesterday I watched a documentary on  HBO, Ann Richards, the progressive governor in Texas. Excellent documentary, catch it if you get the chance. Series 3 of the Inbetweeners landed on Netflix,which I had sort of seen a bit of. Hilarious, catch it, and try and work out who my friend Kirsten reckons represents what I was like at school. Still not quite sure, though a lot of the crap rings true…
My small semi pro studio stuff arrived in the week, so I can now get on with recording the songs I didn't bother to put up. I've been number 1 in the local comedy chart for the last couple of years, my lack of output is getting a little embarrassing.
Lunch with Jen Feather today so I best get myself in some sort of order.  Then, who knows? Maybe that haircut I've been going on about for weeks.

Rain Slide.

I was going to do a lot more yesterday. Beth and I went shopping and I was going to go out in the evening. Then I got wiped out.
Weirdly enough rain and wobbly temperatures is worse than constant freezing cold. I remember a very nice salmon dinner. I know I got the things I needed to build a decent home studio. I know I was looking a the lyrics I'd written and i was beginning to adjust as I went, which I always do. The next thing I remember is rolling over in bad and clumping my pooch at 5:30 this morning, at which time sleep is over.
Its still sodden, with a threat of another crappy day. I have no idea how long I can last in it.  Weird right? Ah well, back to the roller coaster. Coffee, breakfast, you never know I may get more done than I think. That, or dreams you would not believe. Does save on dodgy drugs...