Disposable.-ish

Beth and I came back from Christmas at her folks. I turned the TV on and sat watching the shroud of doom lower itself down the screen. bugger. I remember the last time this happened, we looked around trying to figure out how to fix the problem. Not now. Now, our reaction is, "Ah well lets get another one." When I was a kid a dying TV was a huge deal, where the whole family would try anything to keep it going, dodgy plugs could be stuck back together, lopsided screens, which is what you get if you drop your portable down the stairs, could be loved for their quirkiness, TV's that may or may not come on had their own frisson of excitement. Not now. Ailing electronics are binned immediately, bring forth the successor!
I'm off for my 18th infusion later on today. The infusion, which lets me walk and is ever so useful, only works for 24 days, then the new bloodfire must be implanted! Have you thought of curing the disease? Course not, there's no repeat profit in that. I don't think they've ever got over sorting polio out.
Everything is upgraded constantly, what you buy is technically dead on arrival. Except stupid ideas, which live on the power of loud repetition, until the crap they spout gets moulded into a huge brick of shit fact. We live with shit ideas and dying stuff. Bless. Amen and so forth.
And now, the TV just came back to life. It was either me singing at it or Beth plugging the power cable properly...

Rally

I should have had my infusion on the 23rd December, things were beginning to fail, quite a bit. Then, we went out drinking with Lesley and her mate Nicole yesterday evening. We started at a bar with food at 4pm, this was followed by more bars then more food at 9pm. It all burred into one but I know we had a really good time. Nicole was cool and a lot of fun. Bill turned up, who I've now met 3 times and bought our drinks at one bar, though we saw him in two.
We ended up eating cheeseburgers. I asked for onions on mine and ended up with half a plate of raw onions. To be fair those that made it went well on the cheeseburger. I should have learned my lesson from the morning, where I ended up with an entire thingy of squeezy whipped cream for my strawberry waffle. Great night.

Sun Freeze

I'm sat looking out a window over a sunny golf course outside  of Beth's mum and dad's window. Looks lovely, just right for a nice walk. Until you walk outside. Its fucking freezing. The sort of cold that makes you wonder where the polar bears are at. Ironically, the house is a bit too warm, like living in a bizarre Aesop's fable you can't work the rules of out, but with with nice food.

Gravity.

A few years ago my uncle John told me he'd been in a floatation tank and how amazing it made him feel. I always seem to take time to get to something that I know will help me.
 The last time I made a move I was certain I needed, though I didn't realize just how beneficial it would be, was when I joined an MS yoga class. I remember the first time I walked in. Everyone seemed to know each other. I know now its because anyone with MS that walks into this class will keep on coming as long as they possibly can. The class is amazing in that it gave me, who had lost trust in what my body could do, control I didn't realize I could have.
The room is a no bullshit zone. You do not come to this class unless you are truly fucked. The humor level is high, there's no judgement and everyone looks out for everyone else. This class led to me learning Reiki, which sounds like new age tosh, but is incredibly useful.
I've been doing an infusion once a month, for the last 18 months of Tysabri. I started doing it as, yoga or not, my MS was wiping me out. The Tysabri worked and restored my walking. Its a bit of a head fuck to do, the downside is that if it goes wrong, you are looking at being totally crippled or dead. The thing  about MS is that I reached the point where the risk really didn't seem to matter.
I'm now thinking, living taking the constant risk of an awful end, might be quietly fucking with my brain.
Therefore, I could do with a new way to chill out. No gravity, quiet, darkness and total support? Sounds alright to me.

Bing.

Every morning at 8am or so, a load of junk emails from firms I have no interest in buying anything from, land on my computer. I know they are there as a series of bings go off. Its an electronic invasion of  unwanted consumer nudging, and I hate it. I dislike it so much that any firm that pushes their tat at me this way will never get any business from me, ever.
If I wanted your crap I would let you know. At least catalogues I have no interest in land quietly. I don't buy their crap either, as that is a load of paper I didn't ask for. I know I look like the anti-consumer. Not true. If I want something I'm interested in I'll buy it. I'll look around to find if there is something I haven't thought of. What I can't stand is nudging.
I cant be the only one who hates shit house constant advertising. Looking at BBC News from the States , the video news bits have adverts. What the fuck? Know that the second I see an advert I turn it down the volume by reflex and ignore it, until it fucks off.
Commercials for drugs irritate me. They tell how there going to help the afflicted out, then spend the last half of the advert pointing out how lethal the drug can be. Not only that, the onus is on the sickie to check out how lethal the drug they haven't tested properly is, as if its the sick person's fault if they die trying to sort out a cold.
Why not sell stuff that actually works, rather than factoring in a budget for lawsuits that are inevitably coming?
Oh  yeah, bottom line. My mistake. Bing. Fuck off!

Roses

I watched the Stone Roses documentary as they tried to come back together, difficult, full of near disaster,but they did it. I know I always cite the Pixies as my favourite band and on albums they still are, but there is something about the Stone roses. While I was watching the documentary it took me back to the time before I knew I was ill, when I was at Passfield hall and Dave and I danced to the first time I heard Fools Gold at the Camden Palais. Dave threw himself into the crowd, as was his want, I grooved happily, bothering no one
There are some events that stay with me. I remember watching Konyaanisqasti with Philip Glass playing, Spirutualized at The Royal Albert Hall, one of The Pixies last gigs at the Brixton Academy, Eddie Izzard when no one really knew who he was at the Bloomsbury Theatre, Bowie at the Milton Keynes Bowl, all sorts of gigs.
What brought it back? The Roses. After a couple of years under the MS cosh, I remembered who it is I actually am. I have always worked in entertainment, bands until I couldn't play, stand up, until I knew I couldn't do what I needed, acting  until I knew I couldn't do what they needed.
Am I bitter? Well I have been a bit. It would have been better if I was shit, I always quit when I knew I was doing well but couldn't physically do what I needed.
But, I like to look forward. I know writing is the next thing I get to try. I gave play writing a go earlier in the year and was going to teach stand up then got wiped out by illness so savage I can't really describe it. You'd have to have had it to know, and I wouldn't wish it on my worst enemy. Its actually worse than MS. Tri - neuralgic nerve pain, if you were wondering.
So, onwards and so forth. Even when I know I'm beat for a while, I cant sustain it. The world is way too interesting for that.
This  post soundtracked by My Bloody Valentine, another top band!

Very nice, very nice..

I realised today that Beth and I were sharing libraries on iTunes . I went through and found a lot of music I really liked. Beth has fantastic taste. I found all The Smiths albums, which I haven't had around for ages. I remembered just how much I like them. I'm watching the South Bank documentary from 1987, just after them broke up. One critic put his reputation on the line and said he thought that The Smiths would be remembered as well as The Beatles in 10 years. He wasn't far off. Over 20 years on I still regard them as one of the best bands ever.

Beth and I saw Morrissey a couple of years ago. The crowd went nuts, it was a great gig. If  he reformed with Johnny Marr? Unlikely, but Id go to that gig. 

I shut down any thought of performing and arty stuff pretty much for the last 2 years, since I got into trouble with the MS. I to started doing infusions once a month, just to get back to basically level. Picking up tri- neuralgic nerve pain and wiping it out with very heavy, trippy drugs for 4 months helped but wiped out half the year. If I spoke to you during that time, sorry about that.

But, I get the feeling things are going to be OK. I have no idea how. But it will happen.

1991

In 1991 I was living in a room in a flat above Firugi Jeans in Kentish Town opposite the tube, with 4 other students I had never met before. I was there as all attempts to find somewhere to live in my second year at LSE had fallen through.
The first person I met whilst she was collecting her mail in the shop was Alison. Al and I became really good friends, shared a flat together in my third year, her second in Stoke Newington and despite our parents side ways glances, were not sleeping together. Al and I remain good friends to this day. She was at Beth and I's wedding having flown in from Hong Kong where she's been living for the last decade or so.
I was reminded of this time listening to NPR's piece on Estonia. In 1991 it became a sovereign state away from Russia. My immediate neighbour in the flat was Krista, who was pregnant and quietly terrified of what was going to happen to her country. We figured she was pregnant as she spent a lot of time throwing up. Krista was at the School of East European Studies, Al was at the School of Oriental and African studies and I was at the LSE. Others came through, one at University College London and one at Kings. I never thought about it at the time but not one of us was at the same college.
One night Krista knocked on my door. I had a crappy black and white portable television and she wanted to watch the news, so she could check out what was happening in Estonia. I said of course which I think surprised her as she had the impression i was at best, a drunk, lurching my way around London. Things were tricky but working out in Estonia. she was very sweet, saying, "Simon, you are nothing like I thought you were.:" Bless. She wasn't actually that far off the mark at the time.

This came back listening to the president of Estonia talking about his countries success in the tech field. Estonia was left with no real infrastructure upon becoming a sovereign state and decided to become an electronic led economy. This was described as a 15 year bet, which paid off handsomely. SKYPE was developed in Estonia and Estonian coders are renowned throughout the world. A long way from Krista's fear that her country would dissolve in chaos, something which looked likely at the time.

This struck me as the world has been told we are going down the toilet for the last 8 years or so. That we have to help out dishonest money hoarders, as we can't afford to let them fail. We can. Its a big bet , but it would to be nice to bring them a little humility whilst taking their toys away.

Humbuggery

I have to stop sulking. I hate the winter. MS causes a major full stop and the wish to hibernate until spring. The un-trustable walking does not help and the sense that days have slumped into night by the time I get a hold of them is fucking annoying. "But Si, its Christmas!! Hate that as well, though humbuggery does some times bleed out, usually whilst drinking.  maybe that's the ticket. drink solidly until spring. Hmm...Or get a chinese and forget all about it.
 NPR was talking about the shipping forecast earlier on, how people find it calming even though they may not work on the sea. If I catch it, I do find myself listening along, and I live in the Midwest. Maybe Chinese and a shipping forecast. I didn't see that coming.

Adpocalypse

There is an advert on TV for bacon bowls. The voice behind it has figured out the most irritating way of saying bacon bowls..... I really like bacon. The way these two words are being mangled are really putting me off. I think this is a vegetarian conspiracy to push tofu.

Second at best.

The world has always been full of forward thinkers who see something which can benefit everyone. They are usually not the people who know how to profit from it. What tends to happen is the world changing idea is reduced to a shadow by the need for profit, which everyone accepts as the newthing. The bottom line is just that, the bottom. The arse of a glorious idea.
What does work is repeating shit ideas until they take hold. It doesn't matter how crap everyone knows your idea is, just keep repeating it until everyone shrugs and says, "Thats how it is." History is not going to be kind to our current time. In 100 years there are going to be kids linked together, stood in front of the virtual old world shrugging. "They did what?"
Coffee.

Red Brick

This evening Beth and I went with our friends Fran, Paul and Chris to the soft roll out of the Red Brick inn. Paul and i drank 5 double gin and tonics which I think adds up to ten. I got to remember how much I like drunkenly walking through a bar, how food that turns up late tastes like gold and how one fall on the ice on the way home is alright really.  now watching american horror story asylum. If you've never seen American horror story its great, don't watch in front of the easily offended.

Temperate.

On the whole I'd much prefer to live in a temperate climate. snow is OK for one day. Then I'm done. MS dictates that the drop in temperature knackers me in ways I know are coming but always sem to add a surprise I wasn't expecting. Living in America is actually easier as the temperature may get a lot a lot lower, but its crisp as apposed to the bone chilling damp I faced in England. On the whole I'd much rather be somewhere warm, looking at snowy christmas cards. But it will never be too hot or cold. How will I determine the seasons? At distance.

Up.

I'm up again, though no sleep makes it a movement rather than a change of state. I've had a banana, a couple of peanuts and the one coffee I will drink today. Yesterday was slow but fun as doctor Who repeated endlessly on BBC America. I know its a kid's show, for children but I'm a big kid at heart. The best thing I watched during the night was a documentary on how to fix the american health care system. Care sincere, system shite. Having been in it a lot for the past two years, its easy to edge on the shite side. America, a bankruptcy in search of an accident.
However, the documentary was about the Cleveland Clinic and how they are looking at things a lot differently. Thats the thing about living here, once you think thnigs are entirely run by a bunch of money grubbing twats who don't give a shit, the good people turn up, and make you think again. No sleep, but quite cheerful.

Glide.

I'm up. Doesn't really count as I haven't slept, more of a glide in to the day. This happens every now and again MS will not let me sleep, with a side order of quiet foreboding as we go along. Sometimes its spooky, as it was when I was suffering from seeing people I knew were not there. I checked this out with my neurologists and other people with MS. Its not that unusual, but it can freak you out quite a bit. For a while years ago I thought I may have gone mad or just crossed to the dark side. Turns out its optic neuritis where your brain constructs what your eyes aren't seeing that well. I just wish they had been a little friendlier. So, last night didn't see any of that, watched the Hobbit, which i really liked and started listening to music again, something I hadn't done for months.Landed on Beth Orton, who I've always really liked, Sugaring Season is a fantastic album.
The weird thing for me is that it always seems to take a night of no sleep to get me back in gear. Jamaica was great, the tri neuralgic nerve pain cost me months and wore me out more than I thought. The cross into a potential lethal spot with my infusion freaked me out a bit, that seems to have resolved itself. Having to admit for now performing is over was something I sulked about way longer than i should have done. What next? Dunno, but it doesn't seem to be ghosts or death, Ill take that as a win.

Candy crushed

Beth had been quietly staring her iPad down for the last couple of weeks. I learned she was playing candy crush. Having heard and seen how addictive it is, I avoided it. Until last night. I now find myself in the chair infusion trotting in, playing the fucking thing! Wouldn't have been so bad if I hadn't stayed up all  last night playing it.

Tysabri Day

Today is in fusion day. spent a stressful hour covering bills. The most stressful part of dealing with paying medical bills, once I've got past the WTF! element is the voice telling me over and over how important my call is, whilst telling me there is a wait as they are dealing with everyone else. Once through, the accounts people are always alright, probably because I haven't phoned to shout at them. So, infusion ahoy!

Slide

Today is the day before my monthly infusion. Every time an infusion is coming up I know as my body begins to collapse a little. This month I forgot when the infusion was due and thought the wipe out was coming from nowhere. Now that I've remembered, its crap, but the panic button is off.

Circleville.

Back in the house having been to pumpkin festival that you would have to see to believe. Huge 1,000 pound plus pumpkins, parades and every type of food a la pumpkin you can imagine. Think of the small town you grew up in converting itself into the pumpkin park of delights for a week. A Ferris wheel whirring in the cold with one lone traveller, caring not for imminent frost burn. Hoards of people dressed for summer weather, not even tutting as I pulled my wax jacket closed and put a cap on. Its really something to see, though leave before midnight. That's when the giant pumpkins get peckish.....

Cream Puff Apocalypse.

Beth and I went for dinner with her mum and dad. We went to Schmidts, a really good German restaurant around the corner from her house. Food was great but very filling. We drank a lot of beer. Food finished, now quite pissed, the question came in, "Did you save room for a cream puff?" Anyone who has ever seen the size of the cream puff they serve knows the answer has to be, "no thank you...." Beer had other ideas. Having inhaled the peanut butter version I am now sitting thinking "Blimey, you would have thought I'd of learned my lesson last time." Nope.

Oh yeah....

An early breakfast with my mate Joe. I actually asked for the healthiest thing they had, which was an egg white omelet with spinach and peppers. This was a smart move. What wasn't was ordering coffee. I don't drink coffee much now and I just remembered why. What was worse was taking up the offer of more coffee to take away. Hours later I am still running on a buzz that isn't show much interest in leaving.Oh.

Anniversary day

Today Beth and I have been married eleven years. Been together about 14. I don't make a lot of smart moves, marrying her was the best I've ever made. Love you babe xx

Aftermath

Today is, I isn't. I know I fed Abbey at 6am, put on a load of coffee and passed out on the couch. A quick scan showed me no major disaster had occured. I came back from the Casino with everything I went with, outside of the huge amount of money I drunkenly expected to win.. Hollywood casino my arse.

Pixies - Wave of Mutilation (Live Electric 2005) [HD]

Casino

John and Kate came into town around 9:30 or so. Down to Thurmans around 11. Ate and drank quite a bit.. Did I mention I was trashed before we got there? Chatted to Kevin, who actually recommended the Racino at Scioto Downs as we were clearly too trashed to go to the Hollywood Casino. Columbus does have a twenty four hour casino called the Hollywood Casino. Bless. Staggered into that with no check on age as I was looking well old and drunk. It may have been that it was 1:30am and most children and sensible people would be in bed.
How was the casino? Carpets from a lost age, machines everywhere, which paid out ok, so it was alright actually.  We all got home, result, then realised dawn was not that far off. Today will be slow but pick up pace. I don't know when.

Shit!

The last time I wrote anything was July 26th. This was ages ago. I could tell you I was going through try neuralgic nerve pain until early September, which I actually called try-veginal nerve pain much to the amusement of my doctors. Doctors. Bless 'em thats all I seem to have done, apart from dealing with health insurance vultures.
so, a year or two when my MS decided to assert itself in the primary. July thru October. As dates go, crap. I finally looked on Google plus which had changed, not a myspace swan dive, more of a desperate shuffle to bring in the kids. Bless. Right, health crap, brain re-engaged. If I can't walk I may as well sit and write about something or other. I can walk though it is a bit shite.
 I've done more than I'm giving myself credit for. Last thing Radiolab, which was great, parties, a holiday that I think was really nice, though I was in a drug induced haze and remember little about it.  Lots of lunches and dinners and following the no alcohol space drugs for the nerve pain,  some drinking.
When a life long illness decides to take you out for a bit, it doesn't mean a nice stroll in the park. This is the point where I have to decide if being ill is enough. It isn't. Tried focusing on that, boring and dangerous. I don't know whats coming next, I think it'll be fun.

Reality check

I've had MS since my early twenties. After the cold water shock I thought, I can get through this I'll figure it out, it'll be ok. I'm now 42. Holy shit. MS had loads of stuff waiting I wasn't expecting. Ah well, more stuff...

Bumpy.

July 2nd? That was bumpy. Nerve pain drugs are a fascinating nightmare to ride through. 3 stages. Are you suicidial? No. Do you hate everything and everyone? Yes. Do you believe everyone hates you? Yes. Do you roll up to an aqua therapy session yesterday to a pool full full of old old people stoned out of your mind, believing you've arrived at some bizarre version of Cocoon? Yes Are you then shocked to discover your therapists have never heard of Cocoon? Yes. Are you starting to feel better? A bit.

Weird

Just woke up having gone trough an aqua therapy session earlier today. Strange, in I would  I bet I couldn't go go any where near the the pool, great in that I did. It was the first time I'd left the house since trying to convert the nerve pain  drugs I'm on. Score. The other thing is that is I can't really type or spell that well. hmm. The weirdest bit? I have have no appetite. None. I've had no appetite for weeks, at all. It is strange. I know its very unhealthy, and I'm making sure I eat something healthy every day, but I don't really care what it is. Fuck.

Babylon.

I want chicken, cheese, some of that barbecue sauce thingy, some black olives and thats it. "That's all? But look at all the choices on my options Babylon." Yeah. religio. Look how Babylon went. Just what I asked for thanks.

Unexpexpected.

MS Had that for for decades. That's a nightmare I know. Nerve pain? I've never been beaten up like that before.

Entertainment

Superman trounced by Monsters. Jim not hot happy. James gone, sorely missed. Isle of Man cancelled. Lowry will always split arts world. Jamie Barton singer of the of the world. Les Dennis on Celbrity Masterchef.  Iain Bank's last novel published.

Drugs.

Drug transfer. The first set of nerve pain pain drugs, that didn't work out, in that I couldn't walk on them and are now being processed out. Should of known they were full on, " You need to take less over over the next two weeks." What? OK Now rolling in the in next set of control modules across the reduction of the old. The pain is a little worse than it was, I'm sure it'll settle down as the new drugs increase. Right? Personally, I can't stand drugs. But, I really can't stand never ending nerve pain. Anyone reading this wondering where my stand up class has gone, that's where its gone. Into a never-ending flash of pain that I'm trying to to drug under control. Fuck.

Exception.

I hate all adverts. You speak slightly too fast, speak slightly too loud, know little of what you are are paid to sell and show too much teeth. Those of you who will not not do anything without talking to Angie? Check out her list of hairdressers, You've all been cut like bods. This doesn't include the bloke who takes his t-shirt off during the Caesar  Pizza advert. Funny.

Entertainment.

Your film topped the box office. Whatever day improved book sales. Against the odds, your book won a prize. Your record is one of the best of the year. An old ballet dancer is dead. Your performance enchanted critics. You are a talker with a throat complaint. Your family paintings did well.

Mediocre.

How to make the Orwellian invasive seem mediocre.Of course we check who you you phone. Of course we check what you look at. You put up shit photo's of what you do? We look at those too. You have opinions? We know. You have lots of likes? We know. We know what your friends like too. We don't look at it, we don't don't have to right?

Better?

Your bags of crisps are now full of air. You product is no better, yet more expensive. You are not close to being the best. Better? Better than shit, but that that's it. Ah, much better.

Ex Drugs

I've been back from the beach for a few days. I'm now changing up the drugs to control the nerve pain that I have. I knew the previous drugs were hardcore. I now know for sure  as I can't just stop taking them, I have to step the dose down over three weeks.
Should be on the label before you go anywhere near them! A new effort at controlling the pain starts today, married with the departing trippy yet ineffective drug that I started with. A new relationship, anchored by an ex that will not be exed.

Ribache.

I don't know where we ate at for our last dinner. It was great. I ordered a half slab of ribs. This proved wise when I realized I could barely get through them. They were great though.

Hoorah!

I've come to the conclusion that living in a word jungle, where little makes sense for a while, is no bad thing. Everything is a surprise, "Hoorah!' or not "Oh." but it all drifts away. I do know what's happening, I think, it just takes so much effort to care. Therfore, "Hoorah!", at least for a while.

Coma Vaca Conclusion

The morning drugs are quietly kicking in. They need to be there. They mean I can't walk that well, and they will wipe me out in half an hour or so. But, without them the nerve pain is unbelievably bad. With them it sits in a sulk at tieback of my head. So, holiday? It was great to see john and Sue, who are off to Philly, where a nine hour lay over leaves them plenty of time to grab a bus tour. I can see my uncle charging up the Rocky steps, Philly cheese steak in one hand, twirling a hoodie in the other. My advice? If you have to spend a week whacking down nerve pain, do it in a darkened room, though the the sunsets have been magnificent and the food was great.

Coma Vaca

Dis I imention Carolina was beautiful? Tis, though I haven't seen much of it. Everyone else is happily wandering around, swimming in the sea, trying to go on helicopter rides. I'm going between comas as best I can. I'm not complaining, its actually quite nice, I do get the impression that some may think, Si's not having a good holiday. Wrong. Si is fine, just coma-ing along.

Day Play.

Its beautiful, house is on the beach, right on the the sea. Its humid, I'm hot. I've only taken one of the knock out nerve pain drugs today as I figured we better make the plane. We woke at 6am. Plane at 8am. Made it by getting the fastest cab driver un town followed by the quickest wheelchair operator alive. Detroit. Got to the gate with time to spare. Did fall, but outside of shitting everyone up, job done. Carolina, beautiful. Now awaiting my uncle. Should be able to walk better tomorrow.

Manic Miner.

Manic Miner was a great game. It was a Christmas treat for my 16k spectrum. Then the spectrum disappeared for a few days. When it came back, it was 48k, able to play Elite and other games I'd only read about. I played them. I preferred Manic Miner. These were the days when games were booted by playing a tape. Changing my mind for an old game was not popular. Then came Jet Set Willy. Manic Miner plus! That's what it said. Roam through screens of fun. You could. Unless you made that mistake of jumping into the abyss, when the game locked into repeat until you turned it off. That's what the last few days have been like.Push back the nerve pain with the drugs? Gotcha. Wander around having fun? Will do. Unless, it locks into a repeat, then you have to turn off for a while. I loved manic Miner. Jet Set Willy? Fun but annoying.

3D Nerve Attack

4:26am. Raining. Up. The drugs I'm taking to back off the nerve attack are working. I was hoping for a total cessation, but I knew that it was going to take longer. I still have the the shots across my neck, head, teeth and such, I now have better control over them. The drugs have fucked up my walking and put me into a trippy state, where I know what's going on, I just don't care so much. I can feel the attacks as I type, they are a less scary now that I know they don't spell imminent death. Annoying really, a fly that will not leave your sandwich alone, with a nerve pain kicker. Today? On with the the drugs, trip out the nerve pain with the light fantastic. The title of this blog inspired by the spectrum game, 3D Ant Attack. Which wasn't really in 3D, but great anyway.

MS Treats.

Yesterday, I went for my monthly infusion with a slight worry in mind. 3 days ago I picked up sweeping nerve pain, across my face, neck and head. I was worried that this spelled out the end game for Tysabri. I was wrong. Its just just another MS treat I hadn't come across before. Its difficult to say just how painful sweeping nerve pain is. It goes everywhere, people have teeth pulled,convinced that must be the problem. That did occur to me. Wrong. Its just shit. Some think its a stroke. Wrong. See previous answer. You can get drugs to sort it out. True, though they take a little time. Its so bad,when they couldn't treat it, people thought of suicide. True. Now I know what I'm up against I can get through it. True. Don't like it at all, but its manageable. I can feel it right now? True.

Dominance.

Being left handed can be like introducing yourself as the alien that no one can really trust. I went to catholic schools, after the days when they used to tie your left arm behind your chair, happened to my nan, trying to force the left from you. Though those days were gone, there was always a feeling that I wasn't quite right, or it could have been that sister Ann who taught me for two years, couldn't stand me. 5 through 7, great days. Being left handed is very useful in some sports, cricket and baseball particularly.

 Normal jobs? can be a bit bollocky. Can't be an electrician, death and such. My dental hygienist, who is left handed, had to learn right handed. It makes a major difference having a left handed dental hygienist. Anybody who is left handed could tell you why. That's why right handed people look upon us with suspicion.When you tell them, "It's just different," eyes narrow, and torches begin to burn behind their eyes. The most left handed people you will find gathered together are in the arts. Why is that? Is it some dark connection to the unknown? No, its because the arts are a place where the hand you write with doesn't matter. 

This came up, as I'm researching hand / eye dominance and its effects on dyslexia. The effect having a dominant right eye whilst being left handed, or the reverse, has on learning skills. They talk about patching an eye until the dominant is back in control. Sounds like strapping your arm behind a chair to me.

Sunday Racing.

I don't get to watch motor racing very often. This morning began with the Monaco GP, I'm now onto the Indy 500. I love it. My arms and legs are so screwed that even thinking about driving is difficult. Watching drivers bombing around the track, 200mph+ at the Indy 500, is a pleasure and until the rush for the flag, relaxing. The final rush, pulse throbbing, heart rate up? Great!!!

Fact.

The weather is acting oddly. Fact. Climate change is happening. Fact. There are people who do terrible things defended by religion. Fact. Repeating bullshit over and over makes it accepted by some of the populace. Fact. Those who shout are reported over those who have thought things through. Fact. For many, truth is whatever someone else yells it is. Fact. The word fact is a lot weaker in a bleating self opinionated world. Wrong. You can believe whatever crap you like, in the end you are going to look like someone who has thought about what you see, or a blind idiot wandering towards the cliff edge of time.

Sleep.

A friend of mine asked yesterday, "When do you sleep?" Fair question, I've gone through years of getting little sleep or, when I had insomnia for a month,, practically none. Living in America and having access to the internet, gives me the opportunity to communicate any hour of the day or night. It can look like I don't sleep at all. Actually, I sleep now far more than I have for years. Its not in the usual way, I sleep when I know I have to and don't follow any particular regiment. I know most everybody has to set their sleep patterns around what the know they have to do in the morning.
 I set mine by just how bad my MS is kicking on any particular day. I do this because I've learned the hard way what MS fatigue actually is, how trippy and scary things will get if I don't listen. I do sleep, but not in a traditional way. Suits me, I can't stand tradition, which I've always seen as repeating the same boring thing over and over, because, that's what we do!. Of course, I may have slept through most of that.

Modern-ish.

We sit at the beginning of a new technology which connects us all, whether we like it or not. I can write what I like and have it read by people I will,  most likely never meet,  from places I may never go. I can  write any hour of the day or night, knowing someone is up somewhere. I can see how many people read what I'm waffling about, and where they are from. I don't know who the vast majority are. I don't know how I'm being interpreted. All this gets easier the more I do it. I think the world was always this way. No one knows what anyone will make of what they present, but is quietly pleased to be heard. The faster connection becomes, the more crap we can spray over a wide area, but it does mean discovering something new and fresh  is a keystroke away. I still like second hand bookshops and charity shops myself, thats the luddite in me.

Austerideath

Austerity has caused needless deaths, while governments' claimed to be tackling The Problem, which they caused. Finland's response to fiscal woe was investment in their country and making sure the social safety net was tight.  England did this in the past, forming the National health Service, which we are now busy dismantling. History is not going to be kind. Finland's response? The only smart move anybody made.

Saturday. Fuck Yeah!

due to the subtle pavlovian training of my pooch, I was up at 6am, despite the fact she is not here. I played Kermode and Mayo's film reviews. They reviewed the documentary, Beware Of Mr Baker, the life and times of ginger Baker, I knew I had to see it. I was busy figuring out how to do that, when I found the film on demand. Its fucking brilliant. Ginger is one of the best drummers ever, and burns through life like an wayward comet, laying waste to everything in his path. Despite the destruction the message stays the same, he's just here for the music. I look at his path, and outside of the heroin addiction, had I been well, its one I would have taken. Unlike him, I'd probably already be somewhat dead.

I've always loved skill and commitment, and now I live in the certain knowledge that if things go wrong with what I'm doing I die, I find I'm more engaged than I ever was. The choice that people who take Tysabri look at is this; live out loud and risk death, or live with everything slowly dying inside you. Anyone who has made the choice will tell you, its worth the risk. Of course, this may be my last written statement, if my luck runs out. Weirdly enough, that does make me grin.

Audience.

Blogger lets me see where the audience reading what I write are America has the most, not a surprise. England comes fourth, which is kind of bless. What surprised me is that Russia comes in second and Germany comes in third. I have no idea who is actually reading what I write. I have five followers, but a lot of readers. What has been really cool, is that every now and again someone will approach me and tell me that they enjoy what I write. Its often because of the MS references, which i think some find helpful. Helps me as I've decided to voice what actually goes on, with little cover up. Russia?? Cool.

Week ended.

This morning i have breakfast with Feather to look forward to. This is great, as I know the day is basically going to be dusted out fairly early. Its because I've been doing a lot, for me, in the past couple of weeks. I knew the crash was coming, but exercising was really good, getting my teeth fixed was necessary and being social, vital.
So, i know the weekend is looking fairly housebound. This happens a lot. In the past I've sulked my way through, until things sort themselves out and I can go out again, until The MS pulls me in. I've decided this may not be a great use of my time. I now   spend the enforced downtime learning and writing. At the moment i find myself watching a lot of Inside The Actor's Studio. I love hearing how people approach their craft. The one thing that constantly comes up, which I've always believed, is that listening is the most important thing you do. years ago I was in a bar with my guitar teacher Chris who I've known since I was 10. He looked at me and said, "Si, you listen to everything, don't you?" I didn't realize at the time but he was 100% right. I think its the most important thing that I do. The rest of it is figuring out how to understand and apply what I've heard. And make shit up.

Inter Sulk

My internet has decided to sulk. I’ve expected too much and its not doing nothing until I realise how important it is.  Then it will bring up stuff thats fun but un-necessary when it feels like appreciated, and not before.  There is a theory that we are 3 days without power away from apocalypse. The internet sped this up. How do I know if people are laughing out loud?  Whose relationship is complicated? Who has a show I don’t give a fuck about? When is on? I need to know. I really don’t. Maybe taking a break from convincing myself I’m doing something when I’m really not isn’t a bad idea at all. Of course, its back on now. As you were.

Storm Warning

The crash of whatever damage is being done outside in the dark, which no one can do anything about, did give me pause. Yesterday I went to aqua therapy which I really like. There were a few things i noticed that had been happening for a while. My MS is taking my hands, feet and locking my right leg up a little. Sleep is all over the place, though it always was and recurring ache at the back of my head, though not awful, does give imminent certain death more thought than it deserves.
For some reason I drank the coffee I had left from breakfast late last night and then watched a ton of interviews with actors and comics online. I love watching performers talk about their art and it was a good distraction from what I know is coming. Not the death thing, but the MS which  is waiting to put in a bit of a show. Bollocks. Of course, storms pass. I'm going to go with that.

Overnight Paving.

Things can be shitty during the day. Sleep should be a respite from what ever brand of crap you are currently juggling. Maybe your way to sleep was drinking, in which case you know you are going to pay the next morning. If the problem you are having is due to start the next morning, a brief lull can develop into a resigned pit in your stomach. This morning, I didn't sleep particularly well last night. I ate breakfast and drank coffee over the last few hours. I'm going to Aqua Therapy today. I haven't thought the through. So, if you are feeling a bit shitty,  and have to face the object of night mare today?Fuck 'em. They will have probably have spent their early morning staring into the bathroom mirror until their face turns into a skull. And lay off the coffee.

Nerd Miner

I was listening to Wire, and then watched a documentary on them, where Colin Newman talked out his band Githead. Listened to a few of their tracks which I really liked. some of the members were in a band from Israel called Minimal Compact, who did well in Europe and college radio in America, but never came to England. Watched a documentary in English and Israeli about them. Now watching a gig at The Theatre Club in Tel Aviv 2003. I love unearthing bands like this. Never heard of them before today, right up my street.

Pressure Folly

When I'm on my own, as I am this week, the risk I'm running to feel better does spin around the back of my mind, surging forth every now and again. I know the option is zero if this goes wrong and is certain death. Blimey, that'll sober you up, right quick. You would think I'd be sitting around in a quiet panic waiting for the inevitable. You'd be wrong. Like anyone who has come to this drug, I've weighed up the risk against the benefit, and I'm in. Doesn't mean that certain death doesn't occur to me every now and again, does mean I'd rather take that risk than just sit in a body that is shutting down around me. I said to Williams, "If you thought I took no shit off of anyone before? Wasn't even close. Dancing right on the edge of the abyss focuses the mind and has reduced my tolerance for bullshit to way less than zero. Its a good tribute to mycomedic training, that I can keep my mouth shut at all. Anyway, back to The Who - Tommy which I've always really liked. As follies go, winner.

Awake. Out Awake.

I was doing a load of stuff sometime today. Then? Dunno, I do know I just woke up and realised I've got to late afternoon/early evening pretty quickly. It was a good sleep, unexpected, but quite nice. Can't do this tomorrow, as I've got to get myself to aqua therapy. Good day was it? I miss anything dramatic? Going on the news cycle of the last couple of weeks, I may have slept through people emerging having been held hostage for years, new politics bollocks, entire countries vanishing. Could be anything. And the weather is still shit.

Turning Circle

5:24pm Awake again, day dusted out, as I suspected. Now quite peppy, but with the feeling of a slide back into sleep certain, but the timing not. Blimey, those sentences look like I haven't woken up at all, the construction of some entity attempting pass as human in an Earth invasion blockbuster. My mind is flooded with ideas, all calling for attention. The idea which sits waiting to break the spin around the circle? The Heath Klondike bar I've got in the freezer. Intellect versus food? Food always wins, though I've thought through exactly why that is. Turning Circle.

Dusting.

its 10:16am. I've just got back from a great breakfast with Joe. I know this day is already done for me. I can feel all sorts of red flags springing up across my arms and legs, if I don't call it in right now the risk of the awful is high. Am I upset about that? good question. Its irritating, annoying, but its not unusual. I've had to call in a lot of things I'd thought I'd be doing this year already, so dusting a Monday isn't really that big a deal. The quiet worry is that i keep getting a headache in the back of my head. I think its because I'm waiting for my new crown to be fitted. The option isn't really not good. I do have The Hobbit to watch and Radio 6 to listen to, so, not so bad.

Sunday Funday.

This morning, sitting in my kitchen as I am now, though I'm now listening to Kermode and Mayo's film review show, my right leg went into a massive spasm. I dould physically do how fast it shook on purpose. This happened twice and then shuffled off, having done its job. The job as to wipe out Sunday, job done. Then Stewart phoned me up, I said I couldn't go out so brunch was a wash. He responded by bringing brunch to the house. Lovely. we then watched Doctor Who, The Hobbit, which I slept through then more Doctor Who. Stewart, having a job and such has now gone home. Cheers Stewart. As all my friends know, I'm not the kind of person who should be living in my own head for too long. Against all the odds, top Sunday.

Spasmtastic.

My morning has taken an interesting turn. I'm now exhausted, having had a massive spasm in my right leg. It came without warning, didn't last very long and has drained my energy like a bastard. I spent months in 2010 having spasms in my arms and legs 30-40 times a day. This was a minor twinge in comparison, a "Remember me?" more than anything.
The way spasms announced themselves when they in full flight was through a chill running through the appendage that was about to take a burton. I've been getting warning shots without follow through for a few weeks. Bugger. The follow through and the creeping chills, means today is pretty much dusted, as I recover. Monday anyone?

Saturday.

Beth's gone down to Illinois for the week. She left me loads of treats, which I've over done day one.  i did get to watch football all day, now onto Doctor Who, and eat the really good left over Thai food we bought yesterday. I've enjoyed the first couple of hours,  when the house is mine, now I'm looking forward to Beth and Abbey coming back. Klondike bars and chocolate? They will see me through, once I can look at them again.

Sexual Eating.

Though I keep saying to myself that performing is done, i keep finding new ways to think about doing it again. The idea of a comedy brunch has been sitting in the back of my mind for ages. I performed at one that didn't work out in London years ago. It was at a Mexican restaurant, I don't think the diners were ready for comedy and chimichangas that early in the day. I do think Bacon and eggs might work. Figuring out the level is the trick. I'm fairly sure egg and bacon don't really go with a harried sex life routine. Though it does depend where you are pitching it. Hmm...

Thunder Abbey.

Awake. Sat in my kitchen watching lightning light up the night. Having got me to wake up, and sit with coffee, the kitchen door open, enjoying the rain, thunder and lightning, the storm has now pissed off. I name this storm Abbey. My pooch wakes me up early every morning, I'm waiting for her to stir and stare me down until the food arrives. She then usually insists its playtime, for about an hour, then goes  back to the front room, deep sleep. Don't tell her, but the early morning starts are really helping me out. The storm can piss off though.

Word Fries

Grabbed a cab over to the linguistics centre earlier today. It got to my house quick and dropped me there very quick, following a horn fusillade of near death experience. On time. Good. Then an hour and a half or so of saying what I saw followed by guessing what they said, 4 times. Trickier than you'd think. Got home, hamburger, immediate coma. Still Thursday right? I've got loads of brain melting stuff to do tomorrow.

Delayed.

MS doesn't mean you have to give up on your dreams, though it can feel that way. I didn't sleep tonight because MS will do that every now and again. Its a recurring moment, when the true depth of the trouble I'm in, sits up and requests a good look. I had any number of plans for this year, I managed Jamaica, I'm making my way through the health stuff I have to do, but most of the more extravagant ideas have been put on ice. Its been that way for years, having to delay constantly, until I'm able to pay whatever price is coming. I know it'll work out, I figured doing the Tysabri would buy me more space. Its made a massive difference, but the damage its fighting is considerable. 

Right, I feel a bit better, i hate whinging. Coffee I think. And chocolate cereal.

Work Eat Sleep Wake

This morning, I went to my second aqua therapy. I've always loved swimming, I'm very comfortable in the water. I worked my arse off for an hour in the warm water of the therapy pool. I then got out and realised just how hard I'd been working. Trundled back to the changing room got dressed and went out to meet Beth. Whilst waiting for her I watched the hum of the hospital, people going back and forth, some doing ok, some not so well, but all looking for a better way forward.
Slumped into Beth's car intending to come straight home. Changed my mind. went for lunch at the Skillet. Great lunch, back to the house, passed out. Woke up, realised it was still Wednesday. Went upstairs and did the full body scan meditation, I've booted onto my iPod. An hour passed, I didn't notice. Now awake. What next?

Loving the lose.

I've learned more by losing than I ever did winning. I learned how useful failing is, doing comedy. The gigs that didn't work are where I learned the most about what I was doing. Gigs that go fantastically well are great and a lot of fun, but they never taught me very much. Rooms that just stared, or piled in,  was where I built the skills for the gigs I really enjoyed.
The reason I did comedy was because MS had taken my hands away. I was a musician until then. I felt tired all the time and figured that stand up was a good bet as I only had to perform for 20 minutes a night. I'd started out by doing improv. A failed relationship pushed me to do that. Having performed with a troupe in some ropey pubs, where our presence was less than heralded, I went for stand up.
I did the Jackson's Lane Comedy workshop. The first class, I failed, as  badly as you can imagine. I went back to the second class slightly late. My comic demise of the previous week had become a "Bless him, never mind.." before I got there. I sat at the back of the room, hoping not to be called upon. I was. Up again, the crap of the week before began to fall. Something happened. I played the fail of the first class, it was the best performance I did. It was then I knew I really wanted to be a comic, and what it what going to take to do it.
I use the lose all the time, I find I'm more comfortable coming from a weaker position. That's how I deal with MS all the time. Unless I don't. Depends on the day...

Use.

Surround yourself with the echo of your own opinion. Ignore any dissent. Shout a little louder. More echo. You've got as far as you are going to get. Learning over, usefulness to the development of humanity, less than negligible. Your use, if any, is to inspire the kick back against tired old ideas, you, pushing the world forward a little. Blimey, this morning's coffee isn't working at all. Happy Bank Holiday to my mates in England. There, that's a little chummier. x

Future Proof.

The NRA's victory lap conference, as they left needless death as a force for? I sat wondering, what if you could flash forward the future lives that just got dusted out? Maybe there was a kid who was going to do something that would change the world, maybe it was just a kid who would grow up, get married, have kids, and a new set of people would be born. Didn't have to be spectacular, just had to be. Or, leave the gun seller's shills bleating, and letting multiple future possibilities lie bleeding out, while we all look on and say, "Oh, that's terrible!" and carry on waiting for next time, hoping we can see it at distance. History is not going to be kind to this shite.

Sunday.

Today was a rest preparing for the week ahead. Yoga Monday, Aqua Therapy Wednesday and Friday, followed by mindfulness meditation and such. A few years ago I'd have knocked it all back, leaving that horseshit for others. Having infused me death drug for 10 months and seen the benefit, I'm far more inclined to take help. The drug can't do all the work. know. I tried. Doesn't mean I'm a super clean living sort, does mean I'm far more inclined to give ideas outside of "Ride it out! Then go drinking!" a try. Don't really know what this means, I am willing to find out.

Box Salad Trickery

It claimed to be from Santa Fe. All the elements were in front of me, in their own individual boxes. Add them all together, hello Santa Fe salad! The taste of the south! Or, cue fiddly boxes spraying sauce and lettuce at will. salad sulking feeling the box is, "Keeping my talent under a bushel..." Fight ensues, a blizzard of uncooperative lettuce and salad sections. Salad contained. Phew. Now, eat it? Tricky.

Saturday Shopping.

There is something about shopping on a Saturday. I know the best time to go to the supermarket is early in the morning, whizz around grab the shit that I've convinced myself I  need for the week and get home for breakfast. Not yesterday. Beth and I managed to time it just right in the evening, 8 until 8:40 when the desperate, late idea shoppers arrived. The ideas are often how useful it would be to have toilet roll in the house, and some beer to go with that, would be great.
Our shopping cart is usually a mix of healthy food, things we need around the house, and whatever I threw in when I got bored. Today was chocolate milk, Snowville, lovely, and marshmallows that I spotted out of the corner of my eye, they sang of how good they were with Graham crackers, which I forgot. And a lot of crisps.
The Starbucks was shut, the store was beginning to run as the tragic end/beginning? of an over stuffed badly ventilated club night. Home in one piece, choccy milk ahoy!

Tysabri.

Yesterday I was talking to someone I'd never met before who also has MS. He asked what drug I was doing. I said Tysbari. He said, "The death drug?" Immediately. This gave me pause for thought. I've known since I began taking Tysabri that the downside if things go wrong, is death. I've checked to see if they overstated the case, no they did not. There is a possibility of picking up the PML virus, which cannot be cured, and will kill you. Knowing this, I'm happy to take the risk. Why?
 I went to YouTube to see if anyone had put stuff up. If you want to scare the crap out of yourself, put Tysabri into the search engine. If you can stay with it, you will notice that everyone who does the infusions says the same thing. Its the best treatment available and its worth the risk. Everyone I've come across doing the infusions is perfectly aware of the risk they take, but would prefer to live alive, running the risk of a rapid end, than live dead for longer. Its weirdly comforting to know I'm pushing as hard as I can, that there is no other way, and it is what it is.

11pm again.

I  remember getting back home. i remember enjoying a Katzinger's sandwich.I remember telling Beth I couldn't go out. I remember putting Resident Evil 2 on. I remember thinking, that was a packed day, and that was it, until I just woke up.
 I feel the work that I did in the pool yesterday morning, and the meditation stuff I did later in the day was really useful, but it has to be paid for. For me that's the interesting thing about MS, the risk and price calculation that goes on constantly. Its made me a super realist.I look at everything knowing its going to cost and try to work out whether I'm prepared to pay.  All performing cost me days, weeks, months and I was happy to pay at the time. Well, not happy exactly, I just knew that was the deal. The devil handed out the tap shoes and I danced as long as I could. Now I dance a little more carefully, looking to keep going for as long as I can. When the break gets called I take it, where I would have ignored it and pushed on regardless before. Then, I wake up and I'm reset for another go. 11pm again.

Loaded.

Today was very busy, which is on the odd side for me. Up early-ish, in a swimming pool doing Aqua Therapy. "I know you can swim Si, you're going to hate this." "What?""No swimming." Wha'? Its a swimming pool. And, swim I did not. I did do a load of exercise in a heated pool, until pity was taken. Looking forward to Wednesday, "No swimming. Harder..." Ok. Then onto a lovely lunch, then down to my mindfulness class/session? which looks like its really going to work out. Now home, knackered, prepared for a lot of nowt. Sandwich from Katzingers, Bill Maher on later. Relax.

Morning Prep?

I am up early. I'm always up early. I've been up for a while. I get to listen to the BBC World Service going over stories that don't get covered during the day. I read the Guardian and The Independent, which get delivered to my Kindle every day. I sit, listen. read and spend some time tutting, "Really..?!" This morning it was Stewart Hall confessing to his predatory antics from decades ago. 83 years old and finally bought to account. About time, but it does knacker happy memories of Its A Knockout. Those silly games now look like a road map we should have read a long time ago. The cases are coming up thick and fast, you could think English entertainment was riven with awful bastards. I think there were some who used their fame for the awful. I also think that it will give anyone else a massive pause for thought before acting like that ever again.
Coffee in. Day prep under way. Today is busy,  aqua therapy this morning, mindfulness what not at the Psychotherapy institute this afternoon. The mindfulness thingy, I would have kicked to the kerb as bullshit, not so long ago, I'm still looking at it waiting for the "Live this way!" that I will dust immediately.  I am open to accepting help in a way that I never did before. I am still programmed to call bullshit as soon as I see it. Not so far though. That should fill the day.

Bruisetastic

Yesterday, as my infusion line was being plugged in, I told my infusion nurse that I'd fallen down the stairs early in the day. She smiled. "That, Si, is going to hurt. Not yet, but it really will." She then loaded the drugs into my blood.
I slept through the infusion, having had an unexpected mouth reconstruction the day before and the MS stuntman routine of the early morning, I fancied a nap.
Woke up drugged then spent the extra hour knocking about to check I wasn't going to drop dead. Death avoided, came home. All I wanted was a hamburger. This was incredibly important and took my mind off what I knew was coming. Burger acquired, the Woody Allen from Easy Street with Greek fries. Nice. Upstairs watching Ashes to Ashes, which I really like, letting the feeling I knew was getting worse sit as quietly as it could at the back of my mind. Fell asleep. Woke up, bruising now in full flight, twinging where ever it liked. No black eye, odd as MS falls have been accompanied with a black eye constantly over the last 4 years. Maybe that's why the pain took a while to take hold. No black eye, no place to focus.
The drugs are doing their job with a shrug. "What have you been doing?" and the day has started. Bruisetastic.

Stairy Stairy Morning.

I was upstairs. Abbey arrived at speed. "I need out again!" She seemed to say. I headed for the stairs. I went down them, at speed, falling. Ripped my left arm open a bit, arrived at the bottom, bruised but unbroken. Cleaned up the wound and headed back upstairs for a quiet break. Didn't bust my new teeth either. Win-ish?

Dental Hijinx

Today started with an ever flushing toilet. Thanks to Beth being practical it was fixed by 9:25. Dentist at 10, bugger. Shower, rush, to the dentist for 9:55. Ah, just a cleaning. That'll be an hour or so, right?Well, not really. X-rays showed that a couple of my teeth where at the edge of apocalypse. Immediate crowning or else! Ok. Into the space I'd always wandered about. Puzzle solved. You don't enter that space unless choice is gone. Video goggles. "Pick what you want from Netflix."

 I chose Half Baked, and then tried not to giggle too much as the smell of burning teeth filled the air.  Two hours and a un-locked jaw later, job done. Face still numb on the right. Didn't feel it for another 4 hours. Coma.  Seemed appropriate. Woke up a 9:30, able to eat with minimum dribbling. Glad it was fixed, I saw a picture of the open filing. Yuck! Now, reset for infusion tomorrow, with much better teeth. Ice cream isn't supposed to hurt? I'd forgotten that.

Gold Flush.

Abbey wakes me up. She would like to go "Outside, right now, Please!" Fair enough. Downstairs, radio  on, discussion on Gold on the radio. The talk is of how malleable it is. Ironic, considering how discussions of its ownership are anything but.
Toilet flushed, a water ride, that will not end.There is nothing quite like a knackered never ending flush at 4am, to start the day off. Figured out how to get it to stop, but now living with the knowledge that it has to be fixed. Today, please.
Gold. Looks pretty, kills a lot of people, shuts down the mind until it can be acquired. I prefer platinum, not that many wars fought on its behalf.
If you go to the headphone section at the Apple store, they have tons of headphones that look ok, sound ok and are expensive enough to make you feel you are treating yourself and are part of the sound crowd. The best headphones are on the side, barely advertised, Klipsch, which are the best sound  by a long way. Not that expensive or shiny but elite. Gold, in fact.

Improv.

Fantastic evening knocking around with improvisers, some I'm known and worked with for years, some I just met. Reminded me how much  like improv. Walk on stage, having learned the rules and build something from nothing as best you can. I love the purity of it, its genuinely coming from nowhere, built using the rules you have learned. I can't really do it much anymore, so it was a real treat to play in some games. Cheers.

Arty Fest

I am an arty fucker. there is nothing I like more than being moved to tears by the purity of something I see or hear. I don't even have to understand the mechanics that have got me there. Its the indefinable that I am comfortable with.  This links all the things I really like and move me, is that they are all under the umbrella of best pitch possible. The idea doesn't have to hit exactly, if a sense of movement lives behind it.
That's why Warhorse was such a treat. By the end I found myself taken, and blubbing like a child. The rationalist in me understands the mechanics and can see the work. Initially. Then, it doesn't matter and I get to exist in the world they've created for a while. All art I love is like this. You put in the work, present what you have as best you can and give it to the audience. Their interpretation of what you have done, is what gives it life. The space for constant reassessment is what sustains it. Tricky, but my favourite thing, anywhere.

Widdershins

The screensaver on my Mac shows words. today i had a choice of using rant, which I'm very comfortable with or widdershins, which I'd never heard of.
Widdershins: In a left handed, wrong, counterclockwise direction. Sold. Rant is a staple for all comics, go for the jugular until you figure out the more palatable way to put it, maybe. Widdershins encapsulates who I am. Left handed, my life runs on a reverse track to everybody else. I will walk from opportunity because I have to, knowing that I've done the work to justify my being there. It has happened to me over and over again over the years. I walk/limp into everything knowing it can be over any minute. I then re-group,and counter to what disease suggests is the sensible path, do it again until time runs out.
I've come around to working with reality a little better. Having spent two decades in an invisible war, I now ask for help, rather than begrudgingly accept it. I write about whats happening now, rather than cover it up. I still do not tell the whole truth, but I'm a lot closer than I was. If you are reading this and think, "MS again? blimey." Fuck off and read something else you witless cunt. There a lots of cartoons you can find on the web. Ah, got the rant in after all.

Up

Happy Greek for dinner last night. A nicely full, contented sleep. Now up, all of us, day has started. It is dark but America's Funniest Home Videos saw us through the worst. Birds singing, offsetting the dour, " Fuck me I'm awake, everything is terrible!"pitch of the early morning newscasters. Planning for Beth's Mum and Dad's 50th anniversary well under way.
Today will be warmer right? Its nearly May. My coats are in need of some rest, my shorts are sulking.

Options.

I filled in, with Beth reading out the questions, a load of multiple choice questions for the psychotherapists yesterday. They would reverse the order of your options every now and again, to check you were paying attention, rather than my reading, that is was an Alesteir Crowley-esque mind snare to trip the unwary. The response would change slightly each time. We wrote the different options on whatever cards were knocking about. We wrote on a card for Boden, which was advertising a secret sale. Can You Keep A Secret? The card queried. Here are your options:
1Never
2Almost Never
3Occasionally.
4Usually.
5Almost always.
6Always.
Trickier than you'd think.

Trade Instant

We have become used to the instant. We like it a lot. Booting days worth of music takes no time at all. If you are so inclined, you can make your own album without ever touching an instrument. Is this the end of bands? Of course not. The ability to be able to make something, doesn’t automatically make it a good piece. For comics, everything you try can be sprayed across the internet, for good or bad. Your words can be read as soon as you finish writing them. You can pick up followers you may never meet, most of whom are alright, I think, I don’t know having never met them. Everyone wants to be liked, and the people who like what you do must be alright, right? A lot can be based on instant karma. LOL and such. Does it really mean anything? We don’t know. We are living at the beginning of a social revolution that is different, in that it is so personal.That’s why trolling gets more power than it deserves. The mumblers in the corner get to attack directly, and then go back to staring into the black basement mirror trying to work out why their life is so shit. Everyone has a voice, the trick is to figure out which ones are worth listening to. And ignore the bullies.

Memorivened.

I've joined a course at the pyschological institute at Ohio State, Mindfulness-Based Stress Reduction for Individuals with MS. Spent today doing memory tests, to set a base line for how fucked my brain actually is. Hard work, but remarkably stress free. i think they might be onto something there. I get 8 weeks of training to fire my brain up a little. Their building is really nice, set away from the others. Not on the edge of a darkened forest glade or anything, but clearly in its own little space.
Having run tests for a couple of hours Beth and I had Ramen noodles at Double Happiness downtown, bless trendy for the young-uns. great food too. Came home and spent the rest of the day asleep or awake waiting to go back to sleep. That memory stuff is hard work.

The Dark of the Day

I'm always up way earlier than anyone thinks. Its not that I don't sleep, though i went through years with barely any. I actually suffered from severe insomnia for a while, which culminated with a gig in Hemel hempstead, compered by Jo Caulfield, that i remember nothing about, apart from it working, a bit, then sliding into some dimension I didn't understand but was weirdly comfortable with. I'd whacked in muscle relaxants, possibly too many, and adjusted to living in a permanent haze where everything was either the birth of a new dawn, or the end of a long day. can't wait to go through that with the pyschothererapist, always nice to watch someone's book learning stumble into a WTF!!? abyss.
My early morning starts: I watch/catch up with British comedy. I really like Russell Howard, which as far as I can tell, isn't a popular view. If you can play a room that big, that well and they're not paying? Fair enough. I know that my personal habit of tipping a gig into a word abyss whenever I like, does reduce my room size playability somewhat. Same with Michael Mcintyre. It may not be my thing, but skill is skill.
Abbey is groaning, mournfully  hoping for breakfast to arrive, its still some hours out. There will come a day, when I hear her talking. That's the day my brain has rewired itself one too many times and is not coming back. Scary, but I am interested to hear what's on her mind.

The Hills Are Alive.

Today got washed away. Awake, asleep, awake, out. The whole day was a set of neurological windscreen wipers. I jumped in the shower to buy some time, and we went off to the Hills. The big hint comes in the car park and the parade of nearly trendy but not quites who inhabit the store. Next hint, the trolleys are really small. This is going to cost.
However, the food is really good and I'm actually going to eat it. The fridge is now a place to store food rather than a cold grave on the way to the bin, as the OK gets replaced by anywhere else we feel like eating at.
The on and off wipers are still pounding, but, the fridge is a lot friendlier than it was a couple of hours ago. The Hills, a bit expensive, great food, and definitely not Portlandia.

Mindfulness. Hmm...

Having been vetted on the phone, I'm going in to join the mindfulness stress reduction program for individuals with MS on Tuesday. Mindfulness is a buzzword I've been hearing for months, so I'm interested to find out what they are on about. Not so long ago I'd have dusted this idea off without thinking about it. But, turns out I'm ready for whatever help happens to be going. It sounds like its based on meditation and chilling the fuck out, which certainly has my vote. Its at the psychology institute which does give an "oh..right" element to the proceedings. If I start talking to you about my previous life many stars away, you'll know I may have taken an odd path, and could do with deprogramming.

Sunday? Phew...!

I must of gone upstairs, for there I awoke. Quick check, time left. Into the bathroom with abandon and cleaned the clean of the righteous. Back at the table sitting with the Kermode film podcast rolling. Relax.

Sunday OK

Sunday was looking crap. Then, 10am, John Feather picked me up and we went out for breakfast. The day opened up and got infinitely better. I'm now sitting with Mark kermode's film reviews playing in the background, with a copy of THe New York times which I'm picking my way through. Beth and Abbey will be back around 11pm. This gives me room to read and watch the telly, ahead of tidying the house up before they get back. Health still cack, day? Really alright.

Adjustment

My life is in a constant flow of what I want to do, and what I'm physically capable of. speaking to Joe last night I finally admitted what I know to be true, I don't think performing again is for me. Its not that I  don't want to, its that I know I can't, and I cannot see how things will change so it will work. Crap, but there's other things to do. Having had my mind shut down for a month or so, I'm now moving back to the writing I was enjoying over Xmas. MS is a constant game of going and stopping. the trick is not to judge the stops too harshly, rather see them through and get back to what I was doing. Constant adjustment. Pain in the arse, but better than the alternative i've been told about by numerous, puzzled, sad doctor faces.

Morning Massive Attack.

My rapid fire opinion on Dan Brown, "its shit." got called out today. truth is, its not my sort of thing, but it reads well  and I get why a lot of people like it. Dan's quite happy too, those houses don't heat themselves.
I wake up everyday ready to lash out a little. Coffee and breakfast chill this out, usually until I realize I was right in the first place, though this morning I was wrong. I'm always raw in the morning. Think of the worst time you ever woke up, times that by 10, that's every morning for me. I wake up not knowing how things are going to be, walking, hands, what did I do yesterday? Doesn't excuse being a bit rampy in the morning, thats just how it is. Ah, much better.

Aloney Day 2

Woke up as early as I usually do. Repaired the night before, not too bad. Joe came over and our big night out solution was stay in, drink loads of beer, order a big pizza, wings and eat all of it. Amazing how rebellious that can feel. Today, Yury coming over and maybe Jenn, play loads of music. No pizza. i can't. I just can't! For at least a day or so.

Aloneyish.

I'm in my front room. Doctor Who on the telly, my mate Joe coming over later. I'm snacked myself up and have the couch to myself. I'm 2 hours in, so the novelty of having the house to myself has worn off. I lived alone for years, loved it. Now I'm a lot happier being around Beth and Abbey. The old me couldn't take the risk of needing anyone that much. Turns out I was wrong, and I'm very glad to stand corrected.

Start. Stop.

For years now I've been listening to the radio from England streaming across the internet. Its great, then its gone. Then there is a pause, then its  great again. I was leaned-ish the concept of binary years ago. 10110, On. Off. On. On. Off. Right? I just checked my vague understanding of binary and read an article on the derivations and such. My eyes drank in the info, my brain sought to turn it off as quickly as possible. Function, right? I remember the kid's at school who were doing pure maths, if you caught them pondering and staring out the window, they wore a slightly haunted look, they knew why they were doing what they were doing, but also knew the mountain was near impossible to climb. They would then turn off that overbearing thought and smile their way back into the room. 1001.
As the internet takes a firmer hold, binary on off thinking is everywhere. If something doesn't work switch immediately, the next stop will do what you want. You don't have to wait, 101. Its a long way from the days of trying to get the volume just right on your Spectrum or Vic 20 so you could boot in the game your mate had copied for you. Now, Netflix or bit torent, if you are feeling illegal, will give you what you want immediately. You don't even have to want what you boot particularly, just poke away at a computer you don't understand and let it get on with entertaining you. I'm beginning to think those haunted pure maths kids and the time when you had to put effort in to make a computer do what you wanted, might have had a point. Or, I'm a luddite. 110010

I said Wake up!

Ok, now I'm awake. I was sure I was set to wander through the day, my top barbecue ribs and chicken thought otherwise. I just woke up, upstairs in my house, no recollection of how I got there. I did my usual check of objects  around me, and put together my final waking moments as well as I could. I know I booked an appointment for next week, I found my phone and I listened to a book review, I checked out my iPad. Shower and go to the the gig thatI know I booked for this evening, that'll do. If I ever appear to be unclear or unfeeling about what we are supposed to be doing? A lot of my days go exactly like this.

Fail, Win, Repeat. Fail....

I shouldn't be up. I have a scheduled physical therapy kick in at 11:30 this morning, so they can assess? Ability to float? I keep telling them, I can't walk that well but I can really swim. I've always loved swimming. I was on teams when I was a kid and was the team captain at my middle school. I didn't even get fired! I don't swim enough, so aqua physical therapy is ideal to kick me into a better routine. Drinking the night before, eating too much pizza, wings and such, not helpful. Thank goodness today is going to be a dry land assessment, crap though I feel it may be. If you've never had PT, like an MRI, I'd advise avoiding doing it if you don't have to. The rules are simple push until you start to do well, then crank it up a notch and fail again, until you get a hold of that. Then.... Once I got used to the fact I wasn't supposed to succeed,, just keep building, things got a lot better. We've all had dates like that. Concerns me a little, what is the water nightmare? Ah well, I'm sure it'll help.

For Fucks Sake! And, Relax.

I wish I could say, "The weather has got a lot better, I'm pootling around right nice. That MS has turned around. It hasn't. What is has done is say, "You enjoy the morning? Bit warm innit? I'll need a while to factor that in. Best pass out for now." Well, cheers. I awake to a lot of twats blocking a gun control bill from even being heard, having weighed innocent massacres against what their gun selling cunt masters want and found them kids wanting. Needless death usually teaches at bit a bit of a lesson, right? Nah, best let the psychos realize the error of their ways. Bless.
And relax. I just got off a phone call with my Tysabri monitor where I told her the difference infusing Tysabri every 28 days has made. It really has, the life I had before to where I am now doesn't even compute. Its so much better. I still have lots of work to do, apparently you can't just whack the drug in, eat biscuits and go drinking, but overall my options have opened up to such an extent that the work I have to do is something I'm looking forward to, rather than the last ditch 11th hour effort it felt like before. So, gun control? It'll be alright, idiots can only work against life for so long and America is full of it. As you were.

No return

When certain things are put in place, there is no turning back. If they have momentum they will settle in and create a new reality. Tax increases are a good example. I've seen them creep up, they are never coming down. I remember when 15% VAT seemed unthinkable, that it would destroy spending. We are now at 20%, which is seen as destroying spending. Where I live now, America, they ruck back and forth on tax constantly, keeping it from ever really going anywhere if they can help it. There is no VAT, its a sales tax set by the different states. This is malleable and does change. The tax on fuel and cigarettes are mobile. And no one kicks too hard against them as the tax comes in on things that can be seen as a bit bad.
 The internet has presented huge problems for the tax hawks, positioning themselves off shore, putting their physical presence in the cheapest places and charging no sales tax for their products. They are in trouble for the little tax they have worked out they have to pay, employing a legion of accountants to spot the loopholes left by an old economy. Sounds bad, but your books and music, if you buy physical product any more, are a lot cheaper and good in a way that smoking and boozing it up are not.
There are some who have really figured out how to take advantage of the new reality. Ticketmaster is a great example. I'm paying you a convenience charge? Get fucked! But I do want to see that band though.
The world has always been the same with people seeing what we are going to need, though we don't know it yet, Tetrapak, Amazon, Apple and then they mint it. The governments then go back to the old methods, which all of us hate and drag out the party out as long as they can.
So what's coming next? I keep hearing about bitcoin a new digital peer to peer currency whose value is based in the old for now, that someone made up. Lets see how that goes.

Religioned

Years ago, my RE teacher went around the class getting everyone to read out what they had written for their homework. She went around the class anti-clockwise, so I knew I was last. I also knew I hadn't done the homework. Everyone proceeded to read their work out and I realized I was the only one who hadn't done it. She got to me. I looked at my blank sheet of paper and made the essay up, building from what I'd heard everyone else do. She really liked it. It was going well until she collected the essays at the end. I remember her looking at me, her nickname was Popeye, due to an ill fitting glass eye. The seconds passed like hours. She smiled, "Go home and see if you can write down what you just made up."
I wish she'd marked my RE O level. I think she would have seen my selection of Satanism to describe an alternative religion quite amusing. The examiner didn't. D

OK

Today I went to yoga for MS.I hadn't been for a while, having missed the end of the last term by leaving for Jamaica for a couple of weeks. I love the MS class. Like the infusion suite its a room where there is absolutely no bullshit. No one lies, nobody covers anything up. I remember when I first went years ago, before I understood the rules of the room. I stayed very quiet, trying to figure out whether this was going to work out. I saw very quickly I was in a room, for the first time. with people who were dealing with the same thing I was. Years ago in London I'd turned down a chance to go to an MS meet up drunkenly saying, "I don't want to spend the evening around a load of raspberry ripples!" {Cripples if you are not up on your British slang}. I actually spent that evening getting drunk in Belsize Park and chatting with my chiropractor. And i saw, no irony at all.
The yoga class has been amazing, it took the churlish child who tried to insult his way out of the awful and turned me into a much nicer accepting sort. I still miss classes, I'm seen as only turning up for the pot lucks. But, if I can at all, I'm there. The class has helped me immeasurably and changed the way I approach MS. I still tank and do whatever I want every now and again, but I know the MS Yoga anchor is there when I come to my senses.
The infusion suite is another true room. You do not walk/limp in there unless you are right at the edge of apocalypse. This means the room is bullshit free, friendly and a lot of fun. Top drugs really help. So, I had my life destroyed, thats what I thought for a long time, and did nothing but fight to hold on to the normal I wanted. That was performing as much as I could. I didn't write as I saw writing as finally admitting my dreams were dead. I don't feel that way any more. I'm happy tip tapping when I can and letting people I like get on with the stage work. Would I ever do it again? I was going to write hell yeah! But I honestly don't know. And that's OK.

Merry go round.

The news has always been a fairground of the awful. Newscasters sit and wear serious face, as they intone the massacre of the day. This goes on for a while whilst they give the facts they don't quite have, and offer ill informed truisms as to how we can cope. Politicians come on and provide whatever they've been told their opinion is. Their talking point is repeated, oblivious to fact, a small irritating child who doesn't want salad, they want "Hamburger!" Serious face nods sagely. Just as the burial of the terrible under bullshit seems intolerable we move to sports, and weather for good measure. Breath out. Look out of the window, its alright isn't it? Move on with your day.The 24hr news cycle resets itself for the next round. Like a scab you can't stop picking you come back. The merry go round restarts.

Perception.

This early morning, the World Service is riven with stories about perception. It started with a scientist who has put up his impression of what the big bang sounded like. For me, this is a take by a big fan of Rush and King Crimson, who dreams of the moog coming back and taking the music world by storm. His take was influenced by an eleven year old wanting to know how it sounded. Is this any more ridiculous than everyone feeling their way through life using a series of books no one can agree on?
Next up, Prozac. Like any drug, has a definite downside, but can be useful. A lady in her 60's felt it was a drug that should really be used when you are over 55, and that prescribing it to kids was a no no. I was offered Prozac when I was diagnosed with MS. "That's depressing Si, you fancy chilling that out?" was the considered medical response. At the time I said no and I refused all drugs pertaining to MS for 2 decades. Stupid, but I did let research get on a lick while I limped my way through. I now take a drug with a risk factor of death and I'm happy to do it, it really helps and I now feel the risk is worth taking. If I'm injured Percocet is similar, I know its a 3 day turn around or I'm looking at doom but its really good, nicely trippy and does the job. For me all drugs are the same, I assess the risk against the use and go from there. I know I'm lucky, in that I can pick and choose when to start and end.
Age. the actress who tried to sue to the IMDB for putting her real age on the website. She feels it has stopped her being considered for work. She's right. LA is that shallow, you have to look at risk and fairness versus the potential benefit. Stage work is a lot fairer in that your ability to do the job is more relevant, though not always... Comedy is even more merit based, either you can do it, or you can't. Though again t,here are exceptions.
The more money that you get paid, the more deserving you are presumed to be, even if the one paying doesn't really understand why.
Brian Eno soundtracked the Big Bang????

Dance.

Life is a dance through to the end. We get to pick which music and moves we like. Some like marching lock step, quickly and smartly. Some like to follow structure. They follow the previous as close as they can. Some move as they like and accept that most will not see why. Life is a pulse we all follow. The differences are what makes it so interesting.

Fingertips.

Having dumped everything I could in the past year, I realize that I've been hanging on by my fingertips for a while. This year is better than last year, which ran as close to the edge as I've been. It was the end of a constant MS attack, which had lasted 4 years. The reason I say fingertips is not to be dramatic, more a realization of how much trouble I was in and how much work I have to do to get back to something, if never normal, better.
My friend Jen pointed out to me a few days ago that I've started telling the truth a lot more in these posts. She's right, like everyone else with MS I've constantly covered up or just lied about what was happening. I figured since I have no need to fake, which I never really had any need to, fuck it, write it how it is. Having said that, you're unlikely to ever get the whole truth out of me. There are certain nightmares best not shared. Dramatic, right?

How to save the world?

Sometimes going through the newspapers or listening to the radio early in the morning, I'll come across a story that makes me wonder if I'm still asleep. This morning i found myself reading a long, very earnest article in The Guardian on the eco-activist group, Fuck for Forest. This group looks to help ecology across the world partly through its online porn site, 10 pound a month if you are wondering, and causing a lot of ruckus as they go. The porn is all unpaid voluntary amateur work, again, if anyone fancies a pop. The group actually looks like a bunch of harmless hippies, trying to fuck the world to rights.
Could be worse, though there are plenty of right wing christian fuck wits who will hate it. Harmless hippies fucking for wood / over protected priests fucking kids and getting away with it? I vote for fucking for forests, we could do with the oxygen.

Rain fell.

Awake having dusted most of the day, to a phone call from a good mate of mine. Then, downstairs to a lovely dinner. Sweet potato, beans and kale  Kind of woke me up, ish. Rain is difficult to explain. I know most are not keen on rain unless its the sort that seems quite romantic and mindful. I recommend walking around Soho in London listening to Rainy Night in Soho. MS takes a look at the rain, will have nothing to do with it an knocks you out. At least mine does. I emerge into the previously distant night, trying to work out what i want to do. The rain has gone nowhere and patters on, so I have the nagging feeling is that I may not last too long. The realist in me knows that isn't the case and I'd best settle in for the long haul to dawn.

Weathered

i know I said all changes in weather bring on MS comas. Warm rain is a doozy. I was up, I know I was, put up some James Brown on, then, woke up 20 minutes ago. As I say, shit trial witness, roaming through the days, stop starting having fun, rest now! Fun! I said rest! My old PE Teacher, who modeled in something or other would call it fart legging. "Cross country is a rhythm. Find your rhythm. You cannot fart leg your way around the course!" You can you know, and it is possible for one of us to develop asthma every week. In the hall of fame for playing Eye of The Tiger to inspire us to exam success. Him, a record player, a set jaw, and a room full of kid's trying not to piss themselves laughing. Bless.

New Leaf?

When I first started seeing Beth I told her I was a pipe and slippers type who didn't go out or drink very much. This impression was quashed when a guy came out of an indian restaurant and said,"Don't get too drunk this time! And don't forget your coat." Ah well, I figured, I'm moving to America, new leaf. Not really. Tonight our waitress said,"Don't let him forget his phone this time. Percocet haze. Oh. Well as I sit sobering myself up, I'm happy to be in one piece. I do have a habit of running close to the edge. Lots of fun, but i always pay. So no new leaf, just an old one who knows what the results are a little better.

Filadusted.

Politicians are beginning to see filabusting a bill to protect children from be torn apart by a maniac's machine gun may be a bad idea. I'm not from these parts and don't really get your love affair with easily available death. Having said that, sure you should have guns for hunting and protection, why not? My old man is a hunter and having fired a couple of twelve bore shotguns I get the appeal. However, acting for your rich gun selling friends, going over the death of the innocent? Cunty in the extreme. Get ready to pay the price which is finally forming up. You didn't want to be in the Senate anyway, right?

6 hours.

I'd be shit on trial. "Mr Dowd, do you remember where you were and what you were doing between the hours of 3pm and 9pm April 9th 2013?" No, i really don't. I must of passed out in my house because that's where I woke up, with no clue of how I got there. "Oh...." Clang. I know I was in my house, the radio story was about a drive by on an elephant in Mississippi. Weird, eh?
Today was going really well. top brunch with Jen and Sue, nice weather. Of course, weather change. This always turns MS into a graceful rapid coma spiral. If the weather picks up from shite and its a beautiful day, best to catch me early, or late.

Treat.

Its not that I'm not sleeping. Ask Beth, i spend my days hovering above unconscious as best I can, but often flake out and come around hours later not sure of exactly what happened. Its not exactly sleep, more like a non negotiable adjustment. I wake early in the morning often and put the coffee on, which means more sleep is non negotiable, for now. I listen to The World Service on NPR then move over to Radio 6 and start thinking about what I'd like to do with whatever day it is I've arrived at. Its been this way for years, I was always a late night/early morning sort. I find the quiet very relaxing. Its not that I don't like the day, but not having to lock myself into the constant state of re-adjustment I have to use to exist in the wakey wakey, lets go! of the world outside is a treat I enjoy.

Magzilla!

Awake again having coma-ed most of today out. Remember hearing on the radio this morning Thatcher was dead. This cued up expressions of "Good" and lots of other horrible ripostes that confuse anyone who was not bought up in England at that time. She's not getting a state funeral. Good idea as that would have been surrounded by a lot of people booing. I have a horrible feeling that people would have sung the old marching song, "Maggie, Maggie,Maggie! Out! Out!Out!" Horrible as whatever else,she is dead and the chance she would rise from the coffin intoning, "This lady is for returning! I am back to priviatse the dead!"Don't do a burial at sea. Godzlla tells me this is a terrible idea. I have a giant Magzilla rising from the depths to lay waste to London. She gets to live on as a scary tale for children and adults alike.

What?

Hmm. what shall I write about? I'm up, its really early. I have enough coffee in to make passing out again ill advised and unlikely. My pooch, who has figured out its not breakfast yet is slumped down by the open kitchen door. Its remarkably quiet, not the desparate "We're having fun right?!!" pitch of early Saturday morning which echoed down the street dying as it went. The World Service putts away in the background, vainly trying to find a positive story before giving way and intoning all the horror of the world. Abbey was in, now she's out again, and now back in. I now get to stop her from waking Beth, with the promise of a breakfast to come.
After yesterday I find myself beginning to plot out a new show with Rhonda. Where to put it? How long to write it? Dunno, but its definitely going to happen.
Aqua therapy. Better book that, should give me a clearer idea on how to structure the coming weeks. Yoga today, cool I've missed that. Next infusion 30th April. Tick. Plan weekend for Stand up intensive. Double tick. Work out what I'm doing? On going.

Doubled

This afternoon got to spend a couple of hours running ideas and tearing ad scripts apart with Rhonda. We first met playing Mr and Mrs Hardcastle in She Stoops To Conquer. We had heard that the other was a professional stand up and spent the first five minutes or so when we met sizing each other up. We both realized very quickly the other was what we had hoped. Since then we've worked with each other when we can, and  we are looking to do it again. Can't wait, The two of us seem to read the others mind on stage and know exactly where whatever rubbish we are pitching is going. Can't explain it. Just is.

Lucky.

My Dad told me years ago, "The harder I work the luckier I get." I always had a feeling he was right. The more I've done, the more doors have opened that I was unaware of. My problem has been the same for decades. I can't maintain the required energy level for what I've wanted to do. I started out as a musician. MS took my hands from me. I was soundchecking in a tent that took a lot of people, playing bass for my brother Kev's band. 30 minutes before we were due to go on it sounded like I had never played a guitar in my life. All feel, timing, gone. Got through that with the help of the bloke playing keyboards who doubled the lines while I played what I could.
 Next up Impro. Loved doing that, always had the feeling I should try stand up. Stand up. Learned a lot at the sharp end. London is brutal but fair. Then, compering, to this day my favourite thing to do. Learned how to tone rooms, to adjust as I went and chat to the police when the Friday night apocalypse's arrived.  Doesn't suit MS and I had to quit.
Married Beth, moved to America. Still the smartest thing I've ever done. Read an audition for Shakespeare in the park, thought, I'm English, how hard could that be? Quite hard as it turns out. Actors were generous enough to let me in and I spent my time learning watching great people pitch and applying what I saw and learned. MS did not like that at all. 8 years on kicked the shit out of me, now infusing once a month putting myself back together.
Now? Writing, producing stuff and maybe directing. Infusion working really well, though all neurologists and others with MS look at me every now and again with a "How the fuck are you doing that?" frown.
So, onwards and uppish. Lets not go mad. Throughout everything doors always swung open, even when it felt like everything was shutting down.
Lucky.

Dog tired.

In the past two weeks I've had another 11th hour speech, one that I believed this time, jacked a dangerous but very effective drug into my bloodstream, where it will sit for the next 28 days waging war against my body's permanent attack on itself. Last up, an MRI that I know will read at best, really badly. Now its Saturday and I'm MS tired.
 MS tired is difficult to explain. When other people tell me how tired they are I always think quietly, MS is a little different. MS tired is when you can't sleep, until you pass out, arising hours later with no clue as to how you got there. Its trippy, but not as much fun as you'd hope. I haven't had it recently but I've had periods of time when I was hallucinating pretty much constantly, seeing things I knew were not there. Its not uncommon in MS I found out. Having heard some of the options, I'll take the ghosting thanks.
But, it is what it is. Having gone food shopping at 7:30am we are now set for the next 4 days or so. Lunch was great, basketball's on later and I have lots i can do it the house. And the weathers getting better. Alright, innit?

The Punt.

Today is the Grand National back home. A race where 40 horses take a pelt at a difficult steeplechase, hopefully not too many get injured or killed,  as we all yell and crumple up our betting slips as we realize the reason the horse we bet on was at 40-1 was at best hopeful.
One year a bet I made on such a horse came in. Red Marauder. It was the wettest, most dangerous race I'd seen. Carnage everywhere, only 4 horses finished. Out of the apocalypse came this horse that had little chance in a straight race, surviving the falls and danger around him, surging forth to claim immortality, in my house anyway. I remember yelling him in, shouting and whooping.It was great.
I thought briefly that I was a betting genius and went to the betting shop to claim my winnings. I then started looking around for something else to bet on. I saw a room full of the dissolute hardcore track betters, now onto greyhound racing, holding their betting slips like the holy grail. I overheard an older whiskey faced punter murmur,"This one's for the mortgage", as the greyhounds pelted after the robot bunny. His wasn't the only sadly hopeful face in the room. I put my winnings in my pocket and left. I still like a bet, I'm just not betting the mortgage on it. I like whisky too, but not at the cost of a normal face.

Bleat

There's nothing more irritating than hearing a self entitled rich politician bleat about how helping the poor is going to bankrupt the country. Small pause. Eat some lobster, sip a fine chardonnay, carry on.  Cue railing against benefit cheats, the skivers, taking all the money from the workers. Bollocks. War we never needed and standing back while the banks destroy the economy' who you then bailout, so they can keep their bonuses, for people who failed, up. The worst skiver robbing beer and tab money is nowhere near the  apocalypse your rich cunt donors have caused. Quit bleating, no one believes you anymore, you're just giving us a bullshit overflow headache.

Atypical musing.

Awake. Dog fed, coffee, typing. Sat with a vague memory of what happened last night. I keep writing about my MS at the moment as for once I don't feel like covering it up. All people with MS lie about what's actually happening to them and soften the blow as best they can for the incredulous, worried listener. Fuck it, here's what it is.
According to the textbooks I should have moved from relapsing remitting to progressive years ago. Relapsing remitting, keeps rewiring and fixing it self. Progressive? Takes you out until you are done/dead. All people who have MS know this. All fight a private, mainly invisible internal war. Its amazing to live in. No clue how things will go, best effort and guess, and thats it.
I have always been a case that neurologists shake their head and scratch their chins about. "Doesn't make any sense, he should be totally crippled by now." Sorry about that, I realize I mean you have to put an extra chapter in the textbook. Call it WTF!