Travel.

Today is a travel day. As a sickly whatsit, I have to pack roughly double what anyone else has to think about. Its a fucking bark to do, but nowhere near as bad it would be if I forgot the stuff that I need. Job done-ish, right…?

And Relax.

Having done the MRI, had my monthly drug jacked in , and enjoyed a surprise 4 hour dental repair afternoon, this morning, I had a nice haircut, and I'm beginning to feel a bit Christmassy. A good review of Star Wars from Kermode and Mayo helped and and a really good present find, put the icing on the cake. Teeth fixed, drug in, hair done, and gift buying finished. Ah…..

Teeth Palarver.

I'm writing about my day at the dentist, whilst listening to God Speed! You Black Emperor play their We Have The Signal set. As the music builds and ebbs, pushing back and forth, with occasional dips, but no let up in tension, it soundtracks the day i just had.
I went in to get my teeth cleaned. I figured it would be a Christmas treat. It was all going well until Nicky my hygienist, took a good look on the left side of my mouth. A pained  look of,
 "Ooh, you are in trouble,"
 descended and my Christmas teeth treat became  a 4 hour emergency repair, replete with the sound and feel of drilling, and the smell of burning teeth. Sounds absolutely horrific, but I'm lucky, the people at my dentist,  Merion Village Dental are excellent, and a really good laugh. Given the Marathon Man levels of horror I was looking at, it all came out just fine. And they said I could eat whatever I like! Though I think that might be what caused todays problems……maybe an apple (dipped in chocolate…)

Junior.

Whilst doing my infusion yesterday, I was told that I had been doing it for 41 months in a row. Outside of being married to Beth, thats the most commitment I've ever shown to anything. I was quite impressed with myself, until i found out that the person sat next to me was on her 53rd infusion, and that the person sat next to them was on her 85th time. Having said that, we all paled in comparison with the person who had been in before us, 104 infusions and counting. Fucking hell….

In the infusion room.

This  is my last infusion this year, so I thought I would write something whilst it was happening.

I listening to the Sonic Youth channel streaming off of Amazon Prime. I never watch the tv in here, though there are 3 screens. I much prefer chilling out to tunes.

The line is in my left hand, and has been filling my blood with Tysabri for the last 25 minutes, the infusion takes an hour. I then stay  another hour, to make sure that things don't go tits up. 

I'm in a Comfy chair, feet up, chair leant back. All things considered, very chilled out. I don't know how long I'll be able to keep doing this, but until it gets too dangerous, I'm in.

What goes around...

I am not a hoarder, but I am a fantastic forgetter. I often find myself looking at things that I hadn't seen for years whilst muttering,
"Wow. Why did i stop using these?" I used to have an awful lot of books, DVD's and CD's. This changed when music, film and writing went digital. All of a sudden I could have whatever I liked whenever I wanted. Why get physical things when I could get everything, whilst taking up little to no space? Phones were small, the smaller the better. Then, time went on, and it slowly dawned on me that I like books, DVD's and CD's.
The reason I went to the kindle is that I couldn't physically hold a book for any length of time, or read very well as my MS roamed around, shutting things down at will. It was awful, as I have always been a voracious reader. I'd moved to listening to books on tape, and then the Kindle turned up.
"Its light, you can store hundreds of books, and you can increase the text size? What kind of black magic witchery is this?!" I went back to reading, score. But now, my  MS is now being held back, my eyes are doing a lot better, and my hands can hold the books. I use my kindle for English newspapers, and some books, but I much prefer holding a book.
I like streaming films and TV, but I do order DVD's from England that will never come over here like Detectorists, and I look out for special box sets from companies like Criterion.
Music: I like streaming using Amazon prime, but I want to get a CD player so I can play all my old CD's, where the sound is less compressed. Of course vinyl is the warmest, but I don't have a record player, or any patience.

4 cup Tipping point.

This morning, Beth made a big pot of coffee. she then went out, and I drank all that was left. I know that my tipping point with coffee is when I start the third cup. I'm always quietly amazed when I see americans who drink coffee constantly, and I suspect may have a drip by their bed, so that the caffeine can fuel their dreams.  These are dreams of success! And a lot of running, running from things that they can't quite see, but they know are very bad. I think that the shadow figures may be their nervous system calling out to them.
"For fuck's sake, give us a break! Water please, no junk."
Coffee has taken off in England, but we come from a nice cup of tea, with toast, some jam, and a nice chat. People make cups of tea for each other,
 "D'ya fancy a brew?"
From this small nicety, pints of tea can end up being consumed. This is just as excessive as the American coffee blight, but you do get roast, and a nice eclair, if there's one going...

MRI Results

I woke up today to find the results of the MRI I did yesterday in my inbox. Its an interesting read, including the bit about extensive periventricular and subcortical site matter lesions which are noted, including a few lesions of the cerebellar hemispheres, which appear to be unchanged. Its a Sci-fi tastic romp, which looks terrifying, but ends up saying exactly what I thought it would.

"You're fucked, but in a relatively stable way."

Post

MRI done. I have one a year, so I tend to forget how much I hate doing it. The people doing it are great, the 26inch wide and 17inch tall hole you go into ? Horrific.  The thing that freaked me out the first time I did it, was the plastic shell, that looked like a hockey goalie mask, that sat less than a inch above my head. You cannot move when you are in there, it's like being in a paralyzed version of Friday the 13th. 

Having said that, all done. I now have another year to forget, until Jason comes around again....

Pre.

I'm about 2 hours from having my yearly MRI. It always comes mid December, and it usually serves as my last MS medical stop for the year. This year is a little different, as my last infusion for this year is next Wednesday.
The MRI always gives me pause for thought. The first time I was ever put in one, in 1992, I freaked and had to be taken out. The machine was in a dark, clammy room, which poured out my worst nightmares as it clanked into life. This was during my hospital stay at The National Hospital For Neurology and Neurosurgery in Queen Square in London, when my MS was diagnosed. They got me back into the machine a day later, and I haven't freaked out since. To be honest the worst thing they did was the Spinal Tap, which I still wince about to this day.
The reason the MRI is freaky is that you are told going in that you cannot get out of the machine yourself. I had an MRI in LA years ago, and spent the entire time thinking,
"What if there's an earthquake?"
I kind of know what the result is going to be.
"Well it hasn't got any/much worse."
A nice game you can play is trying to get the people taking the MRI to tell you what they think.
"You've been watching, what d'ya reckon?"
They are not allowed to tell you, though you can get them to cough appropriately as you run though the options.
Ah well, time for a coffin kip.

Friday

Its Friday 11:31 here in America, 4:31 in England. I've decided to give Radio 3 a whirl, and let some classical  music wipe clean the shit house of daytime TV. My body is rebalancing itself, the drugs seem to have settled in.
Last night I wiped out listening to some conspiracy laden show, on an online radio station i'd never heard before, Dark Matter Digital Network. I woke up convinced that a lot was going on in the shadows, that we all knew it wasn't right, but that mentioning it would be a mistake.
Abbey woke me up and I came down stairs. The morning news came on. A stage set in a sterile, over bright room, filled with irritatingly perky, club dressed people, trying to look upset as this morning's slices of disaster rolled in.  Watching the struggle between Botox  and their attempt at emotional connection, it was really quite moving. Just not on their face.
Music putts way happily in the background, as I try to work out if my level of irritation at bullshit is a sign that the MS drug does work? It does, indeed.

Trip trip, softly, softly.

My 40th infusion is done, and the Tysabri soldiers are lining up in my blood to fight MS for another month. As always happens on days such as this, reality is beginning to slip away into an odd, but weirdly comfortable haze. I know that I'm about an hour or so from the moment that sleep slams the door on the day shut. It will open again sometime tomorrow morning. I welcome it. I know my body has to shut down for a reboot, and the sleep is going to be fantastic!

Early Tuesday

Abbey, a dog whose stomach has no sense of time, woke me up at 4am. I, who find it impossible to fall back asleep once woken, rose. We started our daily ritual,
"No, breakfast isn't until 6. Stop staring at your bowl, you are making me hungry."
I open the kitchen door, and she wanders outside for a sniff around. This part of the ritual gets more difficult as the year heads towards the cold. Bored,  she wanders back inside, and goes back to sleep. Bugger!
I'm now up., and put the coffee on. I then drink way too much of it, 3 mugs. I remember that I'm off to the doctors this afternoon. If I have no coffee, my blood pressure is nigh on perfect. anything beyond one cup, the numbers start looking somewhat fatal. 3 mugs. Bollocks! I shall now drink a lot of water, in a vain attempt to thin the caffeine out.
Awake! i listen to the Danny Baker show from Saturday, and briefly believe that it is Friday. No, I don't know why I thought that either. Coffee rolls on,  as the water attempts to reign it in.
Download the Independent to my Kindle. I download a paper from England most days, and the New York Times, if I haven't bought it in the shops, on a Sunday. The Independent is the paper from England I download the most. The Guardian is free online, the Times is alright, and The Telegraph is reserved for the days where I'm grumpy enough to be slightly right wing.
I always look for books, art and films I'd be interested in. Today, it was an art exhibition at the John Martin gallery in London:
Eugenie Vronskaya  - The Night Walker, which is on until Nov. 21st.
If you get the chance, go and see it, I sat looking at her paintings online, beautiful.
6am. Abbey fed, then back to sleep.
Coffee rumbles on, water rambles in. Morning.

Peak Booze

Peak Booze was the time in England when alcohol consumption tripled, from an average of 3.9 litres of pure alcohol per person a year in the 1950's, rising to 9.5 litres of pure alcohol a year each in 2004. I saw Peak Booze in snapshots , coming home from America for a few weeks at a time. I did notice that things seemed to have got a lot drunker while I wasn't looking.
Peak Booze is seen as the direct consequence of moving from 3.5% beer to the 5% lager, and standing around banging down alchopops in crowded bars you couldn't sit down in.
What has changed is the adoption of the American pub as a restaurant model, where you have to be given somewhere to sit, and food to soak up the booze. Its fascinating to look at, how society is persuaded how to drink.
The next change will come when pot gets legalized, and the alcohol companies have to figure out how to attract happy stoners back to the fold. My bet is tincture infused cheese and wine parties.

Jitter-tastic.

Too much coffee. i know that I drank ti much coffee this morning. i know exactly how much I can drink, before it crosses over to a little twitchy. I also know the number of cups it takes to step over the line to jittery. I know that when I go to my infusion, that no coffee means my blood pressure is perfect , and that one sip too many will push it into the,
 "Hmm…that seems a bit high,"  area.
This is when hey start thinking about the  old textbook's definition of what is incredibly dangerous, and what they know is an idiot who has ignored all the warnings, and just drank themselves into coffee oblivion anyway.
Best make use of the energy.
Last week. Having done the pumpkin festival, and had dinner down at Thurmans  Friday night, Beth, her Dad and I went to a car museum on Saturday, which exists just down the road in German Village. If you like old cars, it is amazing. You book a tour with the owner and he takes you around a packed garage, with at least 30 fantastically well kept old cars. If you want to see it, check out Trip advisor, and look for museums in Columbus.
Yesterday. I went to MS yoga and spent a fantastic hour and a half. We were doing the Urban Zen version. There are of lot of Urban Zen classes available. If you ever get the opportunity to go to one of these classes, take it. You don't need to know much/anything about yoga. All you need is the desire to be more chilled out that you can imagine.
This Saturday Beth and I are going to an immersive sound meditation. Same deal, no knowledge needed, except the need to totally relax. I will not be ramping down the coffee on Saturday.

Burr Review.

Yesterday, fully tripped out, with the Tysabri anti-MS warriors running into my blood, we went to see Bill Burr. I found him whilst trawling the internet a few years ago. He is exactly the kind of comic I really like, pushing at the edges of what the audience will take, and then wrapping it all up in a fantastic routine. His timing is absolutely spot on. If you ever get the chance to go and see him, do.

Reassess.

I've just listened to The Stone Roses - Second Coming for the first time in years. Its a really good album, I sat and listened to it straight through. They fell victim by getting bound up in crappy law disputes, and to the expectation that their second album would be a welcome dose of more of the same. It isn't, its a move towards something new.
This is not uncommon, The Beastie Boys second album was very different to the first, and was duly ignored. Like this album, it turns out it was really good, and time proved them right. The difference is that the Stone Roses didn't survive the reaction to their long awaited second album. Take another listen. 21 years on, they were right.

Early to rise.

Today is infusion day. I am up, listening to a radio documentary on Shakespeare's 1606. Apparently it was a cracker of a year, though not if your name was Guy Fawkes.
This months infusion feels very necessary, I've been out and about quite a bit, culminating with Andy Taylor's wedding last weekend. Andy asked me to be his Best Man earlier this year. I was surprised and very honoured to be asked. The lead up to, and the wedding day were excellent. I got to meet Andy's family and his friends, all of whom were really cool people. I found myself standing up in a Presbyterian church, where my Irish Catholic script knowledge stood me in good stead;  until one pitch at the end left me quiet, looking at the floor, riding the words out until we hit the Amen that I hoped was coming. Onto a lovely reception, where I got to deliver a really nice toast, which would baffle those who would have expected the English roast of the groom. No chance. This was a lovely wedding, cock and tart jokes unnecessary.
The wedding done, Beth and I returned back to house stuff, where we got to watch the outside of the house being transformed by a top notch group of painters.
"Ooh," we both said, "Should have done that 12 years ago."
Today, I would like my energy levels to be given a similar touch up, so I can have lovely paint on the outside of the house, whilst the blood barriers whistle through my veins, and my MS goes back to quietly sulking, and biding its time.

Prime Choice.

Years ago I decided to go with Apple, as I was interested in doing loads of arty stuff as easily as I could, and be thoroughly entertained. Apple has done this really well over the years, but their competition has caught up. I'm not interested in iTunes new streaming service as Amazon prime is way better. Apple offer streaming songs,  Amazon offers the same, with films, and two day delivery on whatever you buy, for $79:00 a year. Its no contest. My worry was that they wouldn't have all the music I would want. After using it for a couple of weeks I've realized that its got everything I want, and it just keeps booting more and more stuff.
Having been in the Apple bubble for years, its nice to take a look out over the parapet, take a deep breath and say,
 "Oh, that service is over priced tat, right?"
My recent visit to the Apple store was spent watching people trudging around in a coma, searching for over priced tech that they didn't need, sure that it would make their lives wonderful-fantastic, whilst walking past tables full of people hunched, quietly sobbing,  over the stuff they had bought back, while techs from the genius bar tried to breath electronic life back into the now useless dead bricks of metal before them. This is not a diss on Apple's repair service, it is fantastic. It is also very necessary.
All computers go tits up sometime or another, but it always looks like it hurts more when your Mac book takes a nose dive.
Does this mean I will go back to PC's ? Hell no,  they all go go tits up eventually. I'd like mine to be easy to use and look pretty.
I will being using Amazon Prime though.

Peel Eno appeal.

A few days ago I came across the Brian Eno John Peel lecture. Its was excellent, very different than Iggy Pop's lecture from last year, but fueled by the same love of music. I'm now listening Brian Eno at Peel Acres, where he looks through Peel's archives, whilst he talks about John Peel's influence across the years.
The ability to stream programs like this,  is what I like most about the internet.   I am a colossal music, comedy, art and writing nerd and. I can potter around on the net for hours, looking for art I don't know yet.
There is plenty about the internet I don't like,
"I don't way to play Candy Crush, fuck off!"
I do have to watch what I'm doing,  charity for  cyber criminals is not on my wish list. But, mining the net looking for comedy and music, is a fantastic use of my time.

Post Morning.

The day after my monthly infusion is always interesting, as the Tysabri and my blood spend their time merging together, preparing to fight the good fight. Yesterday the blending  knocked me out, and I woke up in a chair I don't remember sitting in, at 3am. At this point the drug / blood blend seemed very happy, and I was propelled  from a coma to ultra awake. What to do?
The dogs helped me out, as they were very interested in going out to the garden for a while. I went to my kindle, intending to download an English newspaper, which I do every morning. Having tried them out, I think I like The Independent the best. I still boot the Observer on a Sunday, The Times every now and then, and the Telegraph when I'm feeling a bit grumpy, but very prepared to be pleasantly surpassed at how good some of their articles are. I didn't download any of them this morning. I took a look at Kindle singles, went through the interview section, and downloaded an interview with Errol Morris. Excellent.
Whilst I was watching the trailer for the new series Ash v The Evil Dead, Beth called out,
"Si, the Pope's on." Like a good home grown Irish Catholic, I went to watch the speech. It was really something. I do like Pope Francis, his message  positive,  and you can hear the buttocks clenching in the Congress from here. He might be a nice amiable  old duffer, but he just called you out.
Then, back to The Evil Dead trailer, and the Errol Morris interview.
Day quite trippy, but the weather's nice.

Rise and Fall Victory.

I spent this morning listening to Jeremy Corbyn's first run at Prime Minister's Questions, after his landslide victory in the Labour leadership election. He started off changing the tone, from a room full of baying over-priveleged chinless wankers, into a room where the public's questions actually got aired. I know that people were complaining afterwards that he wasn't combative enough, and that it was a like seeing a government version of question time. He has members of his own party stating that he has to be out of power by the next election, or Labour will fail miserably. As opposed to last time?  Anyone who can confound the odds, win, and settle the posh mob for a while, has got my vote.
After I listened to the PMQ, I went to Amazon prime music and listened to the new Fall album Re-Mit. What I love about the Fall is that there are no comprises to trend or taste made, ever. You have to listen your way in, and follow the dark path that Mark E Smith lays out before you. Some have said that the Fall now sound like a bad cover version of a once great band. They are wrong. What is happening, is that he truly doesn't give a shit what anyone thinks any more; not that he ever did. There are some top tunes in there, get digging. This also gets my vote.

Trip.

Just back from Illinois, where we went to a great wedding. Outdoors on a perfect day, friends I've known for ever to knockabout with, a bucking bull that turned out to be a load of fun, great band, great food, top notch.
Sunday I got to ride in a Model A from 1931. Having been worried about getting into it at all, I got to pootle about while everyone waved as we passed. A reverse queen if you will.
Monday we travelled back unto Columbus, stopping off to see Beth's aunt Gladys on the way. She's really good fun, and wants t make sure you get every fact of the stories she is telling you, absolutely right. Got home, house in one piece. Win.
Today, having started out cold, is warming up quite nicely.

Release.

This week I renewed my Green card. We'd applied to do it back in August, as my present card runs out  next January. My appointment was on Friday at 11am. We turned up early, about 10:30, and my card was ready and we were walking out of the door by ten to eleven. It was only after getting this done, I realized how nervous I'd been about it for the past few months. Rationally, I knew there was no problem, but this didn't stop me quietly worrying that is was all going to go tits up. I think I was nervous because renewing the card was something that I had to get done, and the playful parts of my sub conscious decided to have a bit of a laugh, playing me different versions of the disaster which could occur. Lovely. Now, do fuck off. Job done.

Pause.

I'm sitting here for the umpteenth time this week, trying to start. The weather isn't helping,  as the humidity dissolves everything into a sleepy mess. Ideas decide to relax, and  have a lie down for a while. Sometimes its best to leave ideas time to gestate, so they can develop and arrive, right? 

So, chill in the garden, do fuck all, and wait for the shitty weather to take the sunny fun away. 

Momentum

I usually use in ear headphones. Last week i decided to use the amazon vouchers I got for my birthday, to get myself a really good pair of on ear headphones. They came today, a pair of Sennheiser Momentum. I sat looking for music to test them with, and settled on the new Apex Twin  album. I know they will take a while to burn in, but they sound good to me.
I have always been obsessed with music. I can calculate how bad my MS is by how long it has been since I have listened to music, and how long it has been since I've played my guitar. All these things are currently ticking along quite nicely. I'm  listening to a lot of comedy and reading all the time, really good signs that my MS, pig that it is, is not currently dulling the creative corners of my brain.
Part of my love for comedy and music, is that I can enjoy them, and then take them apart in my mind, and figure out how they are done. The Aphex Twin is great for this, as the beats never fall quite where you are expecting them. I don't have quite the same facility with reading, though I can detect pace and flow in writing.
I feel very lucky that these are my obsessions. If it was drugs, I'd have been dead years ago.

Book review.

 Masters Of Doom - David Kushner.

The history of the development of the computer gaming industry, through the story of Id, the company that developed Doom and Quake. The book is great if you grew up playing the games, which I did. Its  a cautionary tale, about how unbridled success can lead you into forgetting exactly what it was that got you there.
I bought it yesterday, and finished it this morning. Highly recommended.

Early Morn.

Abbey and I are up. Its really early, we've been up since 5am. I've been up a few hours longer than that. I went to MS yoga yesterday, I hadn't been for ages. It chilled me out so much that I came home, had some dinner and fell asleep. I woke up early,  really refreshed. I put the radio on, skipping between Radio 6 and LBC, skipping over to the Bill Burr podcast when the radio signal decided to sulk. I'm now listening to the Happy Mondays album Bummed. I love the Mondays, top tunes , top lyrics and Sean Ryder pitching whatever notes he finds appropriate over the top. The nearest thing I've found recently that has the same effect is the Sleaford Mods. I heartily  recommend their album Key Markets, just don't play it in front of the easily offended.

Grumble.

The clatter continues unabated on my road.
"I will look beautiful," it seems to say.
"No, you'll look finished," I retort, having a conversation with a nebulous project I can't see.
"Oh," the imaginary voice in my head mumbles, before tailing off into the distance.
What was in that coffee?

Road Repair Despair.

Our gas lines were replaced a few months ago. The road was reduced to one lane for months whilst they worked on it. This took over two months.  and then, everything calmed down; though a lot of the road repairs looked a little ropey. They thought so too, and are out today, repairing their repair. Single lane road once more.
There was a moment of excitement when the fire engine sirens started coming down the road. "Ooh," we thought, "This is going to be interesting…". Then, it was gone. No fun at all.
If you are heading into town today, I'd give Thurman Ave a miss.

Tunes.

Today I decided to post a song. I forgot how long its been since I posted anything, and having got an ok version on my 3rd try, I had to try and remember how on earth I got it into reverberation before. I got the tune up two hours later. Its one of the first I ever wrote, I've been playing to myself for years. I have a load of songs that I haven't recorded. What am I waiting for? someone to build me a studio, send me a tech to sort it all out? I recorded the tune  I put up today using my iPhone, which I then ported to my mac, ran past audacity, and landed in garageband where converting files to mp3 is a piece of piss. No excuses then. Tunes ahoy!

Numbers.

Today is a little odd. Its always a little odd the day after my infusion, it takes a day or so for my blood to settle down. I know that sounds weird, but I can actually feel the change taking place, as the Tysabri soldiers line up, and prepare to repel the MS attack force for another month.  This infusion was my 36th. I consulted my twelve times table. 3 years, bugger me 3 years! I felt it more keenly as I had my blood drawn at the same time, to check if things had got a bit dicey, and the I would have to stop.
I felt like a wanderer in the pharmaceutical wilderness, a lone traveler, going to where most had never been. This lasted for 5 minutes, until I found out that there was someone else in the infusion suite whose count was 92. 92? fuck me, that's amazing!

Station.

Today I find myself back at infusion station. The last few weeks have been a total hoot. I love going back to England, and spending time with people who I have known forever. Every time I go back I have a moment where I think, "We could come back here, right? " I can't see doing it right now, but it is a nice thought. The current mode of flying in, having loads of fun, and bouncing out before I irritate too many people is working just fine.
So, Infusion Station. Here I am a year ahead of the time that was predicted I could safely do the infusion, before things got really dangerous. I do not know how much longer this can carry on jacking in the dragon blood. I'm aware that I may have written this before. I'm also aware that the medical people, others with MS, everybody really, looks at me and wonders, "26 years with MS? Really? Thats not how it is supposed to go."
I know. I know exactly how it was supposed to go. I'm very happy to keep on getting it wrong.

Journeyed.

The plane from England was crap, but the people working on it were great. its the bizarre balance BA strikes.
A good flight back to Columbus yesterday, despite yogurt-geddon. I did decorate the floor of JFK with strawberry yogurt, much to the surprise of the lovely indian lady sitting opposite. My cry of "Fuck!" as the yogurt and the crumbles spread themselves out all over the floor was quickly retracted. Beth and I then ended up on our hands and knees trying to scoop it all up, with two napkins. Beth realized that this had no chance of working, and sent me back to the shop to get more. I arrived at the shop counter, less than 5 minutes after I'd left.
"What happened?," they asked.
"The airport floor is wearing my yogurt," I said, and left with more napkins.
I got back to Beth and handed her some of the napkins. The lady I'd just got them from was standing behind me. She handed me a new yogurt, and told me not to worry about the debris, as someone would deal with it. Not what I was expecting in JFK.
I go through airports now using wheelchair assistance, having finally admitted that I had no chance of making the flights without tuning up to the gate in a terrible state. It means that I see parts of airports others don't, and ride more lifts in an hour than I would usually do in a year.
Now back in Columbus, waiting for the effect of the last few weeks to kick in. It was well worth it, and I can't wait to do it again.

Last Night 2.

Well I did have a great dinner and I didn't get trashed. We did go to the pub, and it is 2:04am. 2 out  of .4. Not bad. Oh, and I am packed. Did I do my  own packing? Call it even. 2 and a half out of 5.

Last night.

Tonight is our last night before we fly back to America. It has been a fantastic trip, i got to see a lot of people that I wanted to. i've missed seeing a few, but we can sort that out next time.The trips indulgences caught up and  I got sick last night, with my body repeatedly yelling,
 "What the fuck have you been doing?!!"
"Well, Ive been having a great time. I didn't want to keep all that food down anyway."
Tomorrow we get to find out if British Airways is as shit as they were on our way here. I'm sure they've smartened themselves up a bit, right? Well, you can hope.
I now know I'd live in the countryside, or at the seaside. We didn't even go to London this trip, though I'm sure we'll go in next time, or the time after maybe…
So, a nice dinner out this evening, not getting too trashed, then a flight out tomorrow afternoon. This a great plan, though it hasn't worked out upto now….

Revelled.

The party started after we landed on July 11th. This is the first break I've had since then. The coast was great, Beth and I got to wander around Broadstairs and Ramsgate, then spend the evenings drinking in very nice local bars, getting nicely trashed, often with a good mate of mine Brody. Today we came back to Studham. Hugh visited and then we got a curry. Whilst eating the top nosh, the revels of last week started to sink in. Its the kind of tired that I knew was coming, but I thought it would have the good manners to give me a pass. Never mind, I wouldn't trade any of the last week. I'm always tired anyway, but  this time I know that I actually caused this one. Time for a snooze.

England.

We knew my dad's 70th birthday party was going to be on July 11th. British Airways did not get the memo, as they screwed up our flights, 3 times in a row. We got out of Columbus at 7am July 10th and landed in London at midnight. We arrived at my dad's at 1am.  and the party began setting up at 8am. The kid's part of the day started at 3 and the costume party started at 7pm. This should have been a nightmare. It was amazing.
Any party that starts kicking in at 8 am and I finish out with one of my best mates, chatting as the dawn breaks the following day, is a party indeed. It was a hoot.
I got to eat back in time. America does a lot of food fantastically well, but they cannot do a proper clotted cream jam scone. I was so pleased to get one, that I fact I bit into to it and ended up wearing it, didn't bother me at all. I saw it as a badge of honour. Yesterday we started out with sausage rolls, and ended on a curry, which America tries hard at, but misses.
The weather for the party was perfect, in fact it was a little confusing, Where's the rain? It had taken the day off, and has made up for its absence every hour since.
I'm so glad we made it back. I spent the day surrounded by friends and family, ate and drank as much as I could possibly take, and then got to sit under the marquee in the garden, chilling out for the next few days, whilst the rain came back to say hello.
Today we are off down the coast to stay at my mum's the next few days. Horror flight, great party and a  sojourn at the beach. Perfect. Nightmare flights more than a week away. Aah...

Weekended

Last Wednesday ended drunk in a bar. then a walk / stagger home to more drinking. Friday and Saturday were similar, but more focused. John and Kate came up from Illinois and we spent the weekend with food, fireworks, baseball and more booze. Sunday. USA 5 Japan 2. Then, we streamed the Grateful Dead's last gig ever from Soldiers Field. Top weekend. Monday, right?

The Spire

The house vibrates and echoes as the workers seek to remodel her. We've managed to time the installation of a new gas line with the arrival of a new water heater. More sound. To understand how much of a nightmare I think this is,I would recommend reading William Golding's The Spire. Actually, they are all very nice, which is worrying in its own way.

Souper..

We are now a little way into the new century. We have learned absolutely nothing, and are repeating every mistake we ever made. The difference now, is that we live live in a vast technological soup, where we can fill our ladles with electronic shite, and drown our sorrows for a time, whilst we do very little. 

Actually, there is a lot of good coming out of the soup. The problem is, that its coming at us so fast that the old us can’t keep up, and heads back to playing games, and marveling at good cats and dogs are on camera. It has always been this way. The printing press took a while to gain a foothold, porn first, ideas later. Sex and ideas are always seen as dangerous, and are suppressed, until it becomes obvious that they may not have been that bad after all. There are always those who like to close their minds, and live in in a bubble of bollocks. The problem has always been the same, they insist that you have to live there too, or die. 

This shall pass, with a few decades of post bullshit review, when we all get to shrug our shoulders and say, “what the fuck was all that about?” Years will pass, someone will remember why they are really upset about something that hasn’t happened yet, and bubble bollocks will resume. Enjoy the good bits. Aren’t those cats and dogs clever?!

Early morning dog alert.

Abbey came upstairs just after 3am, and bounced around the bedroom in a hissy fit. After I'd woken up enough to know what was going on, we went out to the garden for a while. She is now a lot happier, and has gone back to sleep again. I, on the other hand, am now awake. I've done my property tax, early for once, I'll miss those lovely phone calls,and I'm now looking for something else to do. Hang on, cancel that. Turns out that writing this blog was more than enough. Bed then.

Wiped Musing.

Today is another day which starts with me knowing I am wiped out, and that the day will not get any better. Its been like this since Sunday. its not like being a bit sleepy, its the moments when I can feel that nothing is working at all, and that the day is going to get dusted. Its always scary, as my thoughts  ten to turn in, and sit there muttering, "Is this it?"
 It probably isn't, and I'd put money on the fact that its just another shit storm sent to fuck with me. If you met me during these days, you probably wouldn't see it, as I expend whatever energy I can muster into covering it up. This  makes it invisible, and causes people to say what everyone who has MS hates,  "But you look so good.!"
 Its my fault, as I don't ever want to be judged on what people cannot see is happening. Its also not fair to quietly fume about how fucking ignorant these twats are. People with MS cover  up everything that they can, and are then surprised when no one realises what's really going on. Or, we just think we are dealing with a shit pit of wankers. Its a close call. Well, it is for me.

Sunday.

I didn't really wake up today, having spent the night drifting without sleeping. Sunday is always fun, Radio 6 has lots of great shows on, and On The Wire 's new program comes out. It makes up for the unexplainable twisted ankle, which is one of the many treats that MS shares out, when it feels that I'm doing too well. Never mind, I get to hobble down to watch Once later today. This week has been nicely arty, reading, listening to a lot of music,  and Captain Blood on Friday with Joe and Lucas, which was lots of fun. All I have to do now is stay in one piece ,and find something else to do. MS seems to go through cycles of allowing me to do what I want, and then shutting things down, this time for 4 years. Sounds like a lot, but it has happened to me before, like when I had to stop performing in England. Its no surprise that I would feel the same thing, having had to dust acting. Its not that I haven't done anything, with the drug treatment, life has become a lot easier. I'm just not sure where to risk my health  next.

Wash-bored.

The last week or so has been a wash. The weather keeps cranking up towards the sort of heat that would drive you from the beach to the air-conditioned bar, where drinks and crap telly await. MS keeps peeking over the  burning hill, takes a deep breath,  and then mutters, “Best sleep that off, eh? “ and shuts everything down. Bugger. Having said that, the dreams have been great. I say this, not as a precursor to boring the life out of anyone reading, but because I didn’t dream at all for two decades. I only started dreaming again in the last year or two. 

Its great innit? Nightmares aside, I get to walk around with none of the problems that fuck me over whilst I’m awake. I know too much sleep is bad, but it is a lot of fun.

Reviews:

Bedsit Disco Queen Tracey Thorn.  This memoir is so good, I got her follow up Naked At The Albert Hall, immediately after I'd finished it.

Daredevil. Didn’t watch it for ages. I don’t like superhero bollocks. I was wrong, this is great!

Would You Rather? Horror film on Netflix. Cack.

And , I did describe an arsey bloke as, “Two cocks shy of a smile.”

Oh...

We are surrounded by stuff. We are given every reason to stop thinking. Why ask questions when everything is so immediate, and easy? Why is it acceptable for some obvious criminals, bankers at the moment, to walk as if nothing has happened, whilst peoples lives and dreams drown in their wake of gutless greed?
Why are ideas  reduced to nothing,  whilst trying to please people who do not like when others do not live in their land of pretend? Why are cartoons a death sentence?
I think its because when bullshit is allowed to fester, it builds a huge tower of truth from lies. I think we are not going to go down too well in the history books. Its difficult to see when you are in it,  and everyone would much rather do something else, and keep the party going. What happens when the music stops? It will be uncomfortable and ugly.  Then, we can clear up the crap, and try again. Meanwhile, enjoy the tunes.

Reality check.

This week I have had a real sense of my body and my brain being super connected. MS usually keeps them very separate, which I much prefer. I have the JCV virus, and because I use Tysabri, it can activate PML, (progressive multifocal leukoencephalopathy). 

The odds of getting through PML in on piece, are zero.Its like relaxing, chilling out in the middle of a long, dark tunnel. Perfectly safe, until the lights come up. The reason it is so dangerous is that the Tysabri suppresses MS attacks, whilst chucking my immune system under the bus. Bollocks. I do like walking though, so fuck it.

Week shedding.

This is the end of a weird week, full of fluey /hayfevery, trippy bollocks. I think there are about to fuck up FIFA again, and no one is surprised. And now a slow deliberate talking bloke, determined to monitor where our sewer line is, just knocked on my door.

"Can we go in your basement right now? Have you got half an hour?"

"Why?"

They hate that question.

I said that I didn't.

He liked that less. He said they had to go in, as they didn't want to puncture the sewer line whilst replacing the gas line. 

Which I asked for?

I know I'm not being fair, but there is nothing I like less than having someone knock on the door with something they have to do right now, having given me no warning. Just so you know, my answer will always be no.

And the FIFA vote is on. Seth Blatter ready to fix everything, with a side order of some new dawn rubbish. My answer for him is no as well. But the fix is in, so probably not. FIFA is a great example of how bullshit can be repeated into fact. 

Evening / morning.

I'm sitting listening to fantastic dub from On The hour on Radio Lancashire. If you get the chance, stream it, its fantastic.  otwradio.blogspot.com. I'm sitting sobering up, having got drunk around my neighbours house,  and then crashing a party down the road.  I managed to spill had a can of beer over a couch, and then have a nice sit down. They were a little loud, but lovely, and their party was very well behaved. We then twigged that everyone in the garden was 21 or so, and beat a drunken retreat back to our house. Top evening / morning.

Block Wonky.

Last night I found myself unexpectedly drunk. Beth, Fran and I had been to the block watch meeting. We joined the block watch a few months ago. The block watch is really useful, though if you read too much into whats going on, you would believe that we live in Beirut. We went from the meeting to the Red Brick. This pub has a strange power, it stops me from realizing just how much I am drinking, until we go outside to sit around the fire pit, where air is waiting to deliver the  bad news.
Oxygen  comes calling, wagging ia wispy finger.
"Dear oh dear, what have you been doing?" Hmm…
Actually, if you live in town, go there for the brisket ,which is great, and have a few gin and tonics, lovely. But, leave the Irish coffee exit (and the irish coffee is great), for a less trashed time, In fairness, I wasn't so trashed that I played the Keno. If you've never played it, the shortcut to Keno fun is to take 10 dollars from your pocket, and burn it.

Recycle

Today is recycling. I know this as I remembered as the trucks rolled down the road and rushed the garden stuff out the front, having put the recycle bin out the back. It's the first day since Friday I've been able to do anything. The weekend got washed, and Monday didn't do much better. But Tuesday?  Recovering and recycling. Super. I did watch some films while I couldn't move much. Reviews:

Guardians of the Galaxy - loads of fun.

The Station Agent - it was great to see this again. Fantastic film. Peter Dinklage was always brilliant.

I Spit on your grave (remake) - Don't..

Alien - it's as good as you remember.

The Babadook - Truly creepy horror film from Australia. Great film, don't watch it on your own  at night.

Concrete fracas

We have a great new fence. Our neighbour Paul did a fantastic job. It's changed how I feel about my garden. It is solid, as the posts are submerged in concrete. And then...I tried to pick up the 80 pound back of concrete we didn't use. This went badly. I did get it into the air, at which point my body pointed out what a terrible idea this was. I hit the ground, whilst the bag of concrete decided it would chill out next to me. I scrapped my arm up, and lay there reviewing my actions. I got an F.

When my infusion nurse saw what I'd done, she said,

"That's not the worst state he's turned up in."

Fair play. Great fence though.

Fridazed.

Today is quite a bit trippy. Its always like this the day after an infusion, Its the day when my blood merges with the drug that got dripped in yesterday, and things get a little odd for a while. Its the time when my body gets ready to fight for another month, like traveling up to the start of a roller coaster. Its the day I listen to the radio, read books, play guitar, and eat crisps, whilst waiting for the transitionary sleep/coma to arrive. Ah...

Infused.

My infusion is done,and my blood  drinks in this month's Tysabri. The drug glides into place, ready to see off the never ending MS attacks. They never seem to get bored with trying to cripple me. Once the drug and my blood start working together, they form a barrier, that the MS virus doesn't seem to be able to cross. This doesn't mean the damage that has already been done gets fixed, but it does stop all kinds of other awful from occurring.
The infusion itself? It was great. Nice comfy chair, line fed in by people who really know what they are doing,  lots of tunes to listen to, and a coffee for the hour after. You stay for an hour after the infusion, so that they can check you're not going to drop dead.. I've been infused in this room 36 times, and if I could, I'd go 36 more. Once I accepted that there was no way forward without a little dangerous help, things really picked up.

Sound ache.

The trucks on my road have been reversing and beeping for days. They were here to do something with the gas lines, whilst sending cameras down the sewer lines, because? I dunno, gas and poop patrol? The reversing truck beep is the chinese water torture of sound, along with that email beep off of your mobile.

As my infusion  appointments get closer, my capacity to deal with the sound of daily bullshit, ebbs away into nothing. My appointment is tomorrow. The trucks have left, good. The sirens have kicked off, bad.
 I have periods of time where I find daily noise  physically horrible. I usually whack on some music to cover it up. So, its not all bad, just make it a good tune.

Tracking.

I got up at 6am today, which I do everyday. My pooch has an internal clock, her stomach tells her when breakfast should be coming. sometimes the clock is a half hour early, it is very rarely late. Opened the kitchen door. Soupy humidity and heat. Fuck. That's today scrubbed right?
That is how MS rolls, the weather everyone else packs their picnic for, is the weather people with MS hate more than the cold. Crisp cold that is, damp cold is worse than humid heat. This is why I like American winters. sub zero as you like, but crisp as a brand new button
Its not that I don't want to go on your picnic, or have a wander around the park. Its that I'm calculating the cost benefit of doing ii. This is not a judgement on your sandwiches, i'm sure they are great. I love going on picnics, and I really like parks. Its the weather, its always the weather.
 Having said that, I'll go  any time I can. I wrote this as I watched a youtube thingy of someone with MS, who got treated badly by some ignorant cow. She was very upset, as she felt the waste of oxygen, mouth breathing tosser, was judging her on the invisible nightmare she was trying to deal with.
Anyone with MS deals with things they will not tell you about. All of us try to make it as invisible as we can. Presume that its a lot worse than you can imagine,  and you'll be on the right track.

Heat.

it is hot. Its going to get hotter. 88 F maybe 90 F today. Its really humid. This weather goes well with the election results in England. I sat down to watch the election yesterday, where we were told from the start, that the Conservatives were going to win, but that they were going to need to form a coalition, as they were not going to win outright. Hmm.

Not only did they win, everybody else, except the SNP, took a terrible beating. As the results rolled in, the fires under the other parties got hotter and hotter, to the point where the liberals are basically done,  and numerous party leaders threw themselves under the bus. I would suggest a nice iced tea, but i don't think it would help. Maybe get it from Long Island?

Stone review.

I found a full Children's TV series from England on YouTube, Children of The Stones. Its from 1977, and its really spooky. It reminds me how good children'sTV used to be, and how creepy the English countryside can seem. Its well worth a watch, though it'll put you off stone circles for quite a while...

Reviews.

I would recommend these five:

Life Itself, a fantastic documentary about Roger Ebert. I put it on just as I was about to go to sleep, and couldn't stop watching it.

Kurt Cobain Montage of Heck. Another amazing documentary, very trippy.

Books.

Ready Player One - Ernest Cline. This book is dark , but a ton of fun for anyone who grew up in the eighties.

Neil Gaiman Trigger Warning: Short Fictions and Disturbances. This is a great book with a lot of "Oh, really? Oh…," attached.

Hilary Mantel The Assassination of Margaret Thatcher.  This is a book of excellent short stories, and nothing as political as the title may have you believe.

Smoked.

We spent last weekend watching plumes of thick smoke blotting out the sky. Everyone in Columbus knows that this happened, as you could see it from everywhere. It was a recycling plant down the road, whose pallets went up in flames, and burned for three days. It was down wind from where we live,  so we spent the weekend watching clouds of smoke shroud the city. I trotted around the house as usual, looking out the window every now and again, to check on the apocalypse.
It was a weird weekend. The cloud stayed around all of Friday and Saturday, then began to fade Sunday.
And then, Monday arrived. Columbus shook the weekend off, and it was back to business as usual. Cities seem to have this capacity, to be able to absorb the awful, and to keep on keeping on. Nice work.

Call.

"This is for Simon. Call us, we have news about your blood test results."

Ah. This is the sort of call that makes me stop what I'm are doing, and prepare for what I know could be abysmal news. She seemed very keen that I phoned her back. Oh. Then the house phone started ringing. She is super been that I speak to her. Bugger. I pick up the phone.

"May I speak to Simon?"

"Yes…."

"Good news, your blood test came back negative, You're fine."

"Cheers, I figured this was the awful call I'd been waiting for.Thank you."

"Have a lovely day."

"I will, you too."

I have these calls every few months,  it always surprises me how deep a breath I was holding, before I got the news.

Outside of that everything is cool. I'm listening to The Avalanches and tip tappng away.

Infusion

Every month, for the past 33, I've pootled down to Gahanna, to have a potentially lethal, but very helpful drug mainlined into my blood. I started doing the drug, Tysabri, when it was pointed out that walking would not be an option for me if I didn't. I do like to walk, so I signed up.

The infusion cycle has worked out very well. I went from barely be able to walk at all, to pottering, if not charging about. I have my blood checked every couple if months, to check how dangerous it is for me to keep running the drug through my system. The last check I had said I was doing ok. I'm thinking about it today, as my blood got pulled yesterday for another check. 

The infusion itself is remarkably relaxing. I was initially terrified, but I now see it as a comfy chair, people who know what they are doing, putting the line in, and a time to chill out whilst listening to tunes. And coffee and sweets.

What does happen the day after the infusion, is that my blood has to settle. Yesterday I got home, ate a sandwich, then woke up at 4am. This morning was spent trying to distract my mind from the odd feeling the day after always gives me. I made the mistake of watching some death row documentary online. The attitude of the condemned is a little too familiar. Its not very helpful either. 

I think it is because MS has a certain, awful ending, that waits patiently,  until it decides its time. While it waits it comes after my health and physical movement, shutting things down when it gets bored.

The trick is not to let the plodding awful become everything that I think about, to not live in the debris strewn about by the ongoing battle. And not to judge, when it steals focus for a while.

This what its like the day after the infusion.

Tip Tap

I’m tip tapping away, having ignored the would as best I could, for a week. Actually I’ve been pulling back for a while now. At least I think I have. MS makes it difficult to tell.  I did drop my number one ranking on the local comedy chart, which I thought was fair enough. I can’t remember the last time I put anything up, or even looked at it.  The difficultly with MS is not knowing precisely why something is happening.  Why is David Icke on, having spent the last few days going through a myriad of online documentaries?Is it just so something is happening in the background? 

Hang on. Beth and I went to Mexico, which I really like. Going anywhere two years in a row, outside of going back to England, is unusual for me. What is really unusual is that I found so much more I liked about Mexico this time, having loved it the first time. 

Whats difficult is that I seem to have reached a point with MS where I’m not entirely sure what to do. I know I’ve been lucky, having not moved to primary progressive, with my dangerous monthly infusion still working out, and my odds of the awful remaining good I think its that it has gone on for a few years, and that my only my options are stop and do something else, because I know have to, or miss the warning, which has always been the risk.

Read what back, seems a bit whinny. Fuck it, I know what it is. There is a huge difference between bing told you have no way out, and knowing it for sure. Thats it, it made me stop for a while. If I stop, it then occurs to me, whats the point in that? Waiting for everything to pass, is not going to make any difference. It isn’t going any where.

I think Ive written like this before, doing what most with MS do,  not writing down the very worst bits, which all of us  tend to leave out. 

So, Mexico great, Game of Thrones great, documentaries online, a bit odd, but entertaining, and David Icke, hmm…

What if.

What if

At the age of 21 you were told that your life as you knew it was over. It was an explanation of all the awful unexplainable things that had been going in for the last few years. It now had a name ,multiple sclerosis. Then you discovered it was not immediately lethal, but that life was never going to be normal.  That unless you were limping, unable to walk, or displaying the outward signs of what was going on,  that no one could see what was happening. Sometimes they would question you, about why you are not doing things. Sometimes you would feel the weight of their ignorance bearing down, and you would tell them to go fuck themselves.

You would try to appear as normal as you can, putting most of your energy into spreading a cloak, and hiding the truth that you know you are living in. This would work for a while, but it could not last for ever. The realization will dawn, that you cannot recover, that things will only get worse, and that you will have to deal with it as best you can. The hardest thing to deal with is stopping the good that you did for yourself, and you are the only one who can call it.

What to do?

You can live in the awful if you like, few will call you on it. You can avoid everything, and feel harassed and pursued, when the real world comes calling, and really wants you to join in. That no one can understand  what living with the end of your life staring at you every day is like.

Then, realize you are wasting your time, and enjoy what you can.

Friday.

MS is always easier to deal with mentally when its at its most frightening. When my walking collapses, when all energy is gone, with no sign that that it will ever recover, things are awful, but clear. Of course I can't do anything, everything is in free fall. At the moment i'm in the most difficult bit, where my health has kind of recovered, but some things did not, and I have to change everything again.

Last night I decided to see what was left, and walked from my house to an improv session about half a mile away. I got there and did the session for two hours. It was the first performing I think I've done this year. It was a lot of fun, I've always loved doing improv, though I know that its doubtful I would go on stage to do it again. Theres the issue, doubtful. Thats the mental bit. l know how to perform. I don't have the health to do it as I want to, and its a waste of time worrying about it.

That walk from my house to the session is the furthest I've been able to walk for years. Thats good right? And we joined a gym. Proper grubby armpit. All the machines, not too nice. I don't need to be told how amazing everything is. I don't care how gluten free your cafeteria is.  Do the machines work? That'll be fine. Its 24 hour? Perfect.

Freeze frame.

The tap drips in the kitchen sink, keeping the pipes from cracking into an expensive fountain, spraying money across the garden. Its ridiculously cold. Don't stay out too long, you'll get frostbite and die. Lovely.Where's the skiing? Where are the snowmobile runs? All I see are pissed off people, trying to will spring into existence. Well not all of them. There are people whose favourite time of year is winter.
"I just love the snow!"
Fuck off back to Narnia, and take it with you.

Winter.

Winter is the worst time of year for MS. It always has been. This year it seems even more difficult. Not physically, which is a given, but mentally. I think its because MS means I get to spend my life explaining myself, about how I don’t do the things that it seems obvious to everyone else that I can. 

After the quiet tirade of

 “Fuck you lot! You wouldn’t last five minutes!” falls away to a distant echo, the situation remains the same. I try and give people a pass on their ignorance, mostly. If I’m not limping about, its because I worked very hard not to. Its a lot of ifs. If I’ve turned down something you thought was great, and you don’t understand why, its always MS.  

 25 years of this weighs a little hard sometimes. And I know I’ve been very lucky, I keep hitting the ditches and getting back out. Not everyone has that option.  

OK that was the bit that took me days to put up. Tunes….

Dog food tech.

We have two dogs staying.  Abbey, queen of the house, and Rudy who is staying with us for couple of weeks. They both love being fed. Abbey eats a lot quicker than Rudy, and then eyes his food, looking for him to flinch, so she can swoop. This has got a lot better over the years. I no longer have to stand guard around Rudy so his food is his. They still want feeding at 6am, and need to go out, no matter how cold it is. Balance achieved. Bless.

Weather

Weather? Shit. Health? Crap. Desire to move to warmer climes immediately? You bet. This happens every winter, and every winter I say the same thing. Snow is pretty around christmas. Post christmas, its just taking the piss. Months following? Pure spite.

 Unless I'm snowmobiling, in which case, have at it. I would like to live in a warmer place. I've said it a lot, I'll say it again. "Warmer please!"