Daved and Infused

The Geneva Convention

2011-04-14T08:49:00.000+01:00

Well two weeks after the great infusion things are going well...actually things are going brilliantly. Unlike King Canute the waves of MS have retreated in front of the very presence of King Alemtuzamub. Sat invincibly on his throne, the great Alem Tu Zamub (as he surely would have been called in Ancient Egyptian times) has sent the numbness and the pineth of needleth running...ha, running I tell you.

The great vampire of Hertfordshire came and span my blood to check all was well. She even showed me how, like a medieval alchemist she could turn my blood into a clot, some gel and some liquid serum...then came the news...the serum doesn't go to LA with the blood, no...it goes to Geneva...wow, never been to Switzerland, sure I've eaten Toblerone but now I'm bloody well in Geneva.

That Friday feeling

2011-03-26T13:17:00.000Z

10 minutes and we're out of here

Total Wipeout...

2011-03-24T18:38:00.000Z

...sums up the mood for festival goers today... No more steroids (they don't want us failing a drugs test I guess) and plenty of Piriton, which now free to work without the constraints of the steroid uppers left me (in particular) in a semi dozing state most of the morning. I revived long enough for a couple of rounds of angry birds before succumbing to the rash again. I claimed I could soldier on until there was more rash than skin and I was beginning to look like the singing detective. Time for more Piriton.
And so a particularly unremarkable penultimate day came to an end. Tomorrow is the final countdown...the last day of Alemtuzub for this year...I feel a in tear coming on.

Rash Wednesday...

2011-03-23T18:35:00.000Z

...started off as flat Wednesday to be honest. Our merry band of four were a bit flaked out..no one said much as obs were done, cannulas fitted, iv's attached and drugs pumped. Around about lunch time the pace of chat picked up...a bit of celeb gossip ( I met Posh n Becks in a furniture shop) followed by personal gossip (2 met partners through online dating...including the somewhat dubious sounding “toy-boy warehouse.com”...but I am the oldest so I'm probably out of touch with modern sexual trends.)
Excitement burst into life in the afternoon...North by Northwest (it's always him) spotted an air bubble in his line and rang the bell reserved for emergencies...well all hell let loose. Bells and whistles went crazy: 4 nurses, 2 neuros and a couple of crash teams appeared in about 10" flat....Jesus, what are they putting in us? Emergency over (actually the air bubble wasn't an emergency after all – thankgod we didn’t press for a cup of tea) things returned to normal until the emergence of a rash on me and N-by-Nw...quite normal said Moneypenny and pumped us full of 20 milligram’s of Piriton...don't worry 40 is an overdose so your only half way there...you'll just feel a little sleepppppppyyyyyzzzzzzzz

Day Two

2011-03-22T20:29:00.001Z

Its hi-tech Tuesday here at the Alemtuzamub festival...North-by-Northwest asked why the Alemtuzamub pouches that drip chemicals into our arms were wrapped in kitchen roll. Well, they

react badly to direct sunlight of course was the answer. So this being such a hi-tech trial had they ordered in special reflective covers made at NASA for the Shuttle space programe? No, Asda twin roll absorbant kitchen roll (2for1) will suffice. Talking of drips, toilet time has become a waltz with the drip stands that hold the Asda wrapped chemicals as we make our way cross-corridor to the little room. They, the stands, have the same casters as Asda trolleys, rolling in every direction except the required one. And what's more there are only three wheelie stands for four patients so we have to time our bladders with each other. Don't let anyone tell you the NHS wastes money.

I shall get a little Zen on you now to finish day two...What's the sound of one man peeing with one arm attached by tubes to a stand that only has room to fit behind him? Bollocks, shit, ouch,
pissing hell, pissing floor

And we're off...

2011-03-21T22:31:00.000Z

And we're under starters orders here at Clinical Research in this 'The Alemtuzamub 50000 Guinea Stakes'. Cockney Lady, Quietly Spoken Girl, North-by-Northwest and Davedandinfused look in great condition as they prepare for the starters signal....And we’re off...Cockney lady has made a good start... She's cannulated early, a good strong vein and she's holding her own nicely as the steroids are pumped in. Quietly Spoken Girl gets off to a solid start followed by North by North west and Davedandinfused brings up the rear. They're all up now...the steroids staying the course nicely...a lot of metallic taste being reported...but, oh dear, Quietly Spoken Girl has pulled up, she's feeling faint, turned a little pale there...the steward is in to check her...and she looking concerned but...she’s giving the all clear but not before North-by-Northwest and Davedandinfused have passed her on the inside. Great strength of character there from Quietly Spoken Girl. Now North by Northwest has stopped for a loo break...not for the first time...and now into the section of the race we’ve all been waiting for... Alemtuzamub by infusion for 4 hours...no pause for toilet breaks, athletes will take them on the course a la Paula Radcliffe...And this is a fantastic performance by Quietly Spoken Girl and Cockney Lady....barely pausing for a jacket potato...but can they keep this up...Cockney Lady is looking good for the win now...but no, Quietly Spoken Girl recovers from her early stumble to burst through on the outside....and there is the finishing line....Surprise winner Quietly Spoken Girl can barely contain her excitement...Cockney lady who led from the front has just been pipped at the post....North-by-Northwest comes in third after too many toilet breaks early on and it's a very disappointed Davedandinfused crossing the line last.
Well, plenty more action to go at this festival of Alemtuzamub in the coming days.

the last prick

2011-03-16T23:13:00.000Z

Well I had it all planned out. Friday would have been my final injection. Two years, 312 syringes, 624 paracetamols (give or take a few). I had a bottle of bubbly on ice. My speech was prepared. I had it all planned out. With this prick I thee finish. The kids were going to cheer as I fired the rebiject (Mark II) for it's final journey. One more owch accompanied by a wide eyed stare for 10 seconds and we would toast the end of hamsters in our house and more importantly in my arse/thigh/stomach.

All I had to negotiate was the final pre-Alemtuzamub appointment 1 week before giving up my rodent addiction.
Then they ruined it. Moneypenny announced, casual as you like..."well no more rebif for you".
I'm sorry I said
"You don't take the rebif this week ahead of the trial extension to Alemtuzamub" reiterated Moneypenny as though that was obvious.
But I haven't given up yet. I can't just go cold hamster like that. I might get the shakes. What about the Champaign? And my speech. I had it all planned out...
Moneypenny shrugged her shoulders.
So here I am on a Wednesday without hamsters...not a prick in sight. Oh well, this time next week I shall be full of Alemtuzamub and couscous. No more hamsters. No more chicken pate. I think I'll open the bubbly.

The Scan

2011-03-10T22:01:00.000Z

I'm just going to cannulate you
then we'll get going.
Pop up on the bed darlin’,
no, you can leave your shoes on
You'll feel a sharp scratch.
There, that was quick wasn't it?
Well that's the Gadolinium that shows up your brain
- feels it bit cold doesn't it?
Now pop in these ear plugs...
You've done this before haven't you?
I'm just going to roll this cage over your face
and these little pads will keep your head still.
There, all ready to go.
You can see us in the mirror can't you?
and this switch I'm putting in your hand,
well squeeze it if you want us to stop

And then I’m rolled backwards into the cigar shaped cylinder. In the mirror above my head I can see a league of nations gathered in the office – out of reach and sound of these magnetic fields. The cannulating woman looks like she’s just stepped out of the Supremes with a 60’s bob to boot. She is talking to a little China doll who scribbles notes and the Irish girl who took my wedding ring for safe keeping is staring intently at a screen.

“Ok. The first scan will be 16 minutes long” The lady from the Supremes informs me (she doesn’t sing it) And then all of them gather round the screen. They are chatting and smiling. And then I start to get the feeling that they are actually checking flight prices on the easy-jet site.
“Hold still” she says into the little microphone that connects her voice to my ears. That’s enough to make my ear itch. A sneeze starts to build and I have the urge to cough. Violently. And I can guarantee one thing...I’ll need a pee very soon. The whirring, clanging, crunching sound starts, muffled by my earplugs. All I can see is the girls in their silent ballet as they flit from screen to screen to notes and back. The China doll is drinking a can of coke I notice. Suddenly there is silence.
“Good. The next scan will be 8 minutes” and the clunking, whirring starts up again and the girls go back to the bargain holiday website. Hang on...what’s this? Some bloke has entered their room...Oy, push off mate, these are my girls...how dare he...he’s flirting with them...and they’re laughing with him...damn if I could just get out of this metal cylinder...
”Perfect, the next scan will be 22 minutes” 22 minutes? don’t they realise what this blokes game is?....Oh hang on, he’s leaving...the girls are now laughing at the screen...if they’re not booking a holiday then they’re laughing at pictures of my brain....maybe it’s not my brain they’re scanning at all. Oh, no...the man is back and he’s bought a mate...I bet he has, I can hear the conversation now...yeah, we were wondering if you nice ladies fancied a drink after work...I’m going to cough, sneeze, itch, pee and fart simultaneously....
”Well done” Well done for what? I’m just lying here trussed up like a kipper while some junior doctors chat up my girls...
”One more scan to go. 14 minutes. Keep still” Keep still? I’m hardly going to break dance am I? Hang on...one of the men is now doing a silly dance routine and all the rest of them are laughing...they're scanning my brain waves...let me out....and now they are high fiving each other...for god’s sake they’re having a bloody party while a giant magnet takes pictures of my brain and transmits my thoughts in some Orwellian distopian nightmare...and then I’m being rolled out of the cylinder.

There you go, that’s all done
I’m just going to take out the canular
This will hurt a bit, there all done.
You’re free to go. Thankyou

Nothing to do with MS

2011-03-04T22:42:00.000Z

Our schools are like a war zone. It’s a bit of a cliché and a bit of an exaggeration. But after last week I wasn’t sure how much. We were performing our show “Crime of the century”, a show about gang violence and disenfranchised youth, at an inner city secondary school. 120 fourteen year olds were our audience. Before you can get into the school we need to run the usual gamut of self locking doors, security badges, and more locked doors. The drama studio is unlocked for us. Once inside we find a well appointed space with raked seating on three sides. We bring our own lights - just a touring rig. The kids are marshaled in. There is much shouting from the teachers in an attempt to curb the volume of chatter from over excited 14 year olds for whom double science or whatever has been replaced by watching a theatre show. Once in, a list of student names is read out. 20 students are bought to the front of the class. All except one…"he was excluded this morning Miss” says a brave boy. There’s laughter from two girls sitting near the front. The teacher is apoplectic. “You two have just forced your way onto the list. Come and join the rest of them.” All 22 (21 if you exclude the already excluded boy) have misbehaved on the way into the drama studio. We never hear how they have transgressed but their collective punishment is to be excluded from watching a show about how young people become disillusioned and divorced from their community…You figure it out. These teachers, good people I’m sure, were so busy excluding kids that they had forgotten to teach them. “Our schools are like a war zone” is an exaggeration. But if we’re not careful, some of our kids, in some of our schools will make education an enemy to be feared. Told you it had nothing to do with MS.

Goodbye Shanghai

2011-02-25T20:32:00.000Z

10 injections left. Yes indeedy. As of March 19 it will no longer be thrice weekly injections of the Chinese hamsters for me. They will be replaced (blood count willing) with - a 1 yearly, 8 hours a day for 5 days only - infusion of the mysterious sounding Alemtuzamub. This is not a recently deposed dictator from the Middle East. Nor is it a modal scale much loved by free form Jazz musicians. You don't take it with cous-cous and it won't clean drains. It is however the all singing, all dancing MS drug that I've waited two years for. It's 30% more effective than the Chinese and 60% more effective than doing nothing.

I can't say I'll miss the hamsters. Two weeks ago my applicator - a Rebiject MkII (automatic) in case you're wondering - jammed at the deepest setting. I didn't notice first time on account of my right bum cheek being largely feelingless. But oh boy did my left bum know about it. Half an inch might seem trivial to some but not to my bum. Bruised and sore (I hit a capillery apparantly) I was unable to sit comfortably for days. So, no...fare-thee-well my genetically modified Chinese rodent ovaries...I'm moving onto pastures new. Bring forth the Alemtuzamub....let's get it on.

Writers block

2010-12-20T22:53:00.000Z

I'm back. I haven't been anywhere. I merely fell off my blogging bicycle and the longer I left it the more difficult it was to get back on. But the truth is I fell off because I had nothing left to blog...better to say nothing than talk about nothing. Trial world has been a bit dull really. The highlight of November was an exploding blood spinning machine. All was ok until a sudden "BANG" and then my blood was splattered Tarantino like onto the top of the glass roof. A splurge of red. What looked very impressive at high speed spinning, like a Dali-an expression of my illness gradually became a blob as it slowed down. A bit like my attempts at a potters wheel....at high speed it's a vase, then as it slows down it's a bowl, it's an ashtray, it's a shapeless lump of clay. So my blood turned out to be less like a Monet and more akin to a Pollock. That brings me nicely to my Vasectomy. You're right. Too much information. Somethings should remain unblogged...well, unblocked.

let's fly away

2010-10-16T21:48:00.000+01:00

I finally finished my 2010 tour schedule with a quick flight to and from Edinburgh before driving down to Wales for the week. My carbon footprint is not good this year. I've flown over 20, 000 miles in person but my blood has blown that away with its monthly journeys totalling up at over 65,000. Bloody Hell. I wonder if I can retrospectively claim airmiles for my blood.

Talking of blood the vampire lady rang me the other day to confirm our monthly blood letting. And then she casually threw in that it would be a longer appointment because the Americans wanted to "check something" so she needed to spin my blood.
Check what?
"Oh, nothing"
How are you going to check nothing?
"It's all quite routine" she said
Well I beg to differ. Routine is what happens every month. Centrafugally spinning my blood for fifteen minutes is not routine. It's occasional. It makes me dizzy at the thought of it. My blood has had quite enough adventure this year with out throwing in personalised fairground rides.

die-caffeinated

2010-09-26T16:41:00.002+01:00

It's been a long week
.... down to Whitechappel for the quarterly neuroteaser checks...Made a good start - only got two questions wrong in the maths marathon addition competition. Put in a good showing in the short corridor sprint, but nowhere near my personal best and the 1/2K walk to Commercial Street has been replaced by an indoor version - the walking machine - not as pleasant but that's scientific progress for you. Leg tickling and pushing me over when my eyes are shut and I'm standing on one leg all went according to plan. I do love it at clinical research. It's like a surreal day out in a 60's Doctor About The House film. NeuroBond thinks my lax right leg is not a sign of exacerbations but a continuation of March's relapse which is comforting (I'm not imagining it) and annoying (6 months is surely enough lapsing). The rest of my time is spent waiting for Moneypenny to extract enough blood to satisfy the American pharmacutical company's vampirical lust.

Sitting and waiting is the perfect time to log on (it's a Wifi hospital) and catch up on e-mails. There's one from the blog marketing company who aren't making it easy for me to earn the full meal and west end show experience. The last two "job opportunities" have been for funeral services and a coffee shop in Vancouver. Even with my lateral sense of thinking and even after a bottle of red wine I can't make my blog meander through the subjects of death and coffee drinking in Canada (they also offer a selection of panini's and wraps if you're in the area) whilst living in London. But, with $12 at stake....

"I'm dying for a coffee....thought I'd try this new place in Vancouver...6,000 mile round trip taking three days but boy the coffee was worth it...on the downside all that coffee, travel and jetlag has given me hypertension...a great incentive to plan for my funeral...."

bum

2010-09-22T22:43:00.001+01:00

My poor old legs have had enough of injections. They've got the needle. Or more acurately too much needle. Injection fatigue. They've had enough of feeling a prick. Two red blotches have grown wider and redder. My hither too manly hairy thighs have gradually taken on the look of a well waxed male model. Only it's not the look for a middled aged balding man with a beer belly...and certainly not just one large bald circle on either thigh. The bald circles, alas, mirror my head - where I've never injected incedently - and now I'm beginning to feel a percecution that entails every limb collecting a bald patch. Three down, two to go...is the head a limb? Anyway, Neurobond, who was on particularly good form at our recent Neuroteaser session says I should try my bum....actually he said buttock, but bum feels less scientific...so I'm no longer a leg man. Me? I'm a bum man.

up on the roof

2010-09-09T09:47:00.000+01:00

Such is the popularity and quality of this blog that I was contacted by a digital marketing company who offered me money to write the blog. It was all very simple and went something like this....They would match companies seeking blogs on their subject matter to my blog. So if Asda were hoping to increase interest in their new range of health insurance this comapny would let me know, I would include discussion of health insurance in my next posting, mention that Asda were great, Asda would pay the company and the company would pay me. Mine being a health blog meant I would be matched to companies interested in health issues. Easy. How much was the big question? How much? $6 a post was the life changing answer. But hell - despite the disingenuous nature of covertly using my real life blog to advertise products for my own financial reward - 52 posts a year at $6 a post would pay for a romantic meal and a West End show for me and the wife. Happy days.

The difficulty of having MS, I find is when you want to use interlocking roofing tiles. I guess it’s the numbess in my fingers that mean my choice of interlocking roofing tiles is a new company called Avernex. It’s reassuring to know that when I’m replacing the roof I can easily interlock the roof tiles and get off the roof quickly before I suffer a relapse or a dizzy spell. So if you’re suffering a long term illness and thinking of replacing your roof I suggest you consider interlocking roofing tiles. They really do interlock and go on the roof.

That’s a prawn cocktail in the bag.

no flies on me

2010-08-29T16:56:00.000+01:00

The advantages of having MS just seem to expand all the time. Once again the hot Mediterranean country of Spain has shown the way forward. Not this time the joys of walking unhindered down red hot asphalt paths without feeling the burning sensation in my feet. (see post 18/08/2009) This was far more practical and handy. Flies. Yes, flies. It happened when we went to visit friends in Marbella. We took the coast road down from our regular haunt of Nerja down to the luxury resort arriving in time for a splendid bar-b-q and a large, thirst quenching cocktail. Bliss. "If it wasn't for those pesky flies" said everyone as they swatted the damn things every time they landed. Everyone except me. What flies? "The two walking up your right leg for a start". Sorry, my right legs an authentic registered spastic and does not recognise, feel or notice insects alighting on it. So there we have it. Spain is where MS sufferers should move to and enjoy the freedom of walking bare foot on hot roads and the pleasure of bar-b-q's without the annoyance of flies bothering you.

Still singing

2010-07-18T20:48:00.000+01:00

Well shout it from the roof tops or whisper it quietly - I feel good and have been for several days...this weird disease has dissappeared for a while...and while the cats away the hamster has fun...but should I be shouting or whispering?....shouting feels like it will invite a problem...I always worry about this...you see, down at Tottenham, when we take the lead against another team we start singing very loudly....”you’re not singing, you’re not singing, you’re not singing anymore” followed by “you’re shit , and you know you are”. Now I know that at some point later that afternoon 5000 away fans are going to enjoy rubbing our faces in that...so is it better to stay schtum and avoid the humiliation of reverse baracking or enjoy your moment in the sun?....Well in this case I’m reasonably sure that no one is going to revel in screaming “MS is back, and you know it is”....So whisper it loudly is today’s maxim....”I’m ok and you know I am”

Spaz and Edss

2010-07-12T20:07:00.002+01:00

There is something in the MS trial world called “expanded disability status scale”. Edss for short (as though you have a lisp and a friend called Ed). In the world of EDSS a zero is absolutely fine, A OK, top of the world. The scale gets progressively worse until ten . You don’t wanna be a ten. Ten is dead. When the missing blinded assesor reappeared after his absence we set about testing my EDSS. We walked on the walking machine, we stabbed sharp and blunt instruments into my limbs and we generally scraped soles and banged knees with hammers, tuning forks and the like until he had a score.

Now, growing up in the 70’s, a world away from the political correctness of now we had an all purpose insult in the playground....spas, spaccy, spazoid, spastic. It covered all the ground from “Hey, spas pass the ball” to “Spaccy, give us a lug on your fag” and of course “Carey is a total spastic”. Now I know that’s deeply unkind but it didn’t seem so to 13 year old boys in 1977. A spastic was just a plastic boy with a gammy leg outside a charity shop. Besides, you couldn’t catch spastic, you couldn’t become a spastic. Now I know different. Blinded assesor tells me i have “significant spacicity” in my right leg. Are you telling me my right leg is spastic? Well he tells me I’m going to have to put you down as a one. So there we have it. I’ve still got nine lives left and Carey may not be a total spastic. But his right leg’s giving it a good go.

Pear Shaped

2010-07-06T21:20:00.001+01:00

The highly efficient service that has characterised life in Clinical Research came spectacularly off the rails today. My 15 month appointment was set for 8am (that is apparently a legitimate time in the morning). To be at Clinical Research for 8am means leaving North London at 7am which requires getting up at 6am (in my books that is not a legitimate time. It's a bastard of a time). Then it turns out that the blinded assessing doctor who is due to make me hop, skip and jump before enquiring about my sex life is stuck in Colchester. Colchester is a Roman town. It's a straight road to London and he's very fond of making me prove I can walk in a straight line. But not today he isn't. Everyone is suitably embarrassed. NeuroBond can save the day. He is my unblinded doctor for the day. Due at 9am. Then it turns out NeuroBond 'doesn't like mornings'. So he'll be late. An hour late. What's going on? No blinded doctors, no sighted doctors. Even Moneypenny is missing. New nurse is offering me coffees and teas (probably an attempt to get me to wee in the sample jar). But it won't wear with me. She takes my blood, and eventually the piss before checking my blood pressure. It is apparently 'quite high'. Deep breath. Calm.

Fab 1

2010-06-28T21:31:00.001+01:00

Sunday saw us hot footing it down to Hyde Park for 'Hard Rock Calling'...50,000 people (including me and Fi)...and some bloke called Paul McCartney. It was hot...hot beyond belief...the afternoon started with Elvis Costello. Unfortunately for Elvis he had to compete with England v Germany which in the wisdom of the organisers was shown on the big screen while Elvis worked his socks off....Now I've performed to many a disinterested audience...but none have roared with excitement in the middle of one of my biggest hits because England have scored...fortunately I've never had a biggest hit and fortunately for Elvis England only scored once.

Crowded House had the unenviable task of lifting the 20, 000 crowd who were now collectively 4 - 1 down and fed up. But let’s be honest - sun, beer and always take the weather is such a winning combination that Footie suddenly seems like a pointless kick about between 22 overpaid teenagers. (I'm not bitter about England crashing out of course)
Crosby Stills and Nash looked like we expected...but bless 'em, they sounded like heaven (bearing in mind we had consumed large quantities of beer by now - all in the name of staying cool and hydrated...yeah I know)
Then the man came on. The big Macca. Well if I had a back catalogue that included most of the 60's and 70's greatest hits I'd be confident...besides I've always been a Lennon and Harrison man...I mean they never wrote the Frog song....but eat my hat, sit on my hands, consume large quantities humble pie...he rocked, he rolled, he blew 20, 000 people away. He sang with a band, he sang on his own, he delivered hit after hit after hit after....after all, he was one of the f'ing Beatles...

Cats and Dogs

2010-06-11T17:11:00.000+01:00

It rained cats and dogs on us when we arrived on the English Riviera, as it's called. I'm sure when the sun shines it is like an English Riviera. When it's raining cats and dogs it just looks like the usual English seaside town...grey and dull. I should know - I was born in one. After we travelled to the English Riviera we travelled to Birmingham which is supposed to look grey and miserable but then the sun came out and cheered us up immensely. I should point out that I'm on tour again. Have mixing desk, Apple and needles - will travel. It seems odd that a year ago travelling with needles and injecting in dressing rooms and strange hotel rooms seemed worthy of concern. Perhaps it's a sign perhaps of how quickly we adapt to things. What once seemed new and intimidating is now second nature....Sling the meds in a bag and off we go. I travel alot all things considered...something which surprises people. Is that a good idea they will say....with your condition. I think it's a brilliant idea. I have two young children at home who fight like cats and dogs.

Light and Heavy

2010-06-01T20:18:00.001+01:00

Dizzyness has continued on and off...there is something very disconcerting about waking up dizzy...inevitably Vic Reeves gets stuck in my head which makes a change from Bruce Springsteen but when all said and done I'd probably prefer the boss with his wooohoho I'm on fire sensation to feeling like I've fallen over in a drunken heap at 8 in the morning. I checked in with the GP (it's never the same GP twice) who on reading I was on a trial for MS drugs and that I was feeling light headed asked if the marijuana was helping the MS. Chance would be a fine thing. When I explained that it was just chinese hamsters via thrice weekly injection he seemed to lose all interest...Oh well, I shall stick with Vic Reeves until the good folk at clinical research can check me out at the end of the month...

On a lighter note we spent the weekend doing exactly what I shouldn't do...overdoing it. The family all went down to Greenwich for the Jazz and Beer festival. There wasn't much jazz but the beer made up for it. In fact the Brand New Heavies headlined and the girls insited on being up the front, leaning on the barriers. Security man - who Fiona said looked like Bruce Willis - was on hand to reassure us that if the crush got too much and we started to feel light headed...well that was all I needed, being manhandled over the barriers by John McCain having fainted at a 90's revival gig. It's hard bloody work this MS.

nothing

2010-05-22T17:28:00.000+01:00

For the second week running I have nothing to say of any real importance, interest or relevance...so I could make up some spurious MS related stuff or I could say nowt...having said that I did have a new and slightly odd sensation that may have been nothing to do with MS.....I have had several episodes of what I can only describe as light headed moments...as in...oh, I think I’m going to fall over...two of these ocurred whilst lying down in bed which certainly added a perplexing edge to the falling over feeling...it’s difficult even for me to fall over whilst lying down...but my usually unreliale balance is at these moments of light headedness completely and utterly abandoned...it’s the sort of thing I’d normally put down to vino rouge but as it occured without the use of vino rouge and continued to occur without such help, I guess it’s not wine or football related...which brings me neatly back to my opening statement that nothing of importance, interest or relevance has occured...

When Saturday Comes

2010-05-11T19:53:00.000+01:00

I had to hold off writing this from my usual Sunday to the less popular Tuesday...here's why...Monday afternoon was my big chance, my big shout for a career as a pro footballer...I lie, I've always been rubbish at kicking anything except the cat who is so old she can't remember where her food tray is...but, through serendipity of job I was given the chance for a "kick-a-bout" on the hallowed turf of the great Tottenham Hotspurs. We've followed the Spurs in our family since my Father's father's father lived round the corner from the ground. My brother flirted briefly with West Ham we've forgiven him this peccadillo and generally stayed loyal to the lilywhites. And now this was my chance to come down from my seat in the stands and run on the pitch...maybe score a hatrick, glide gracefully over the right wing, shuffle a couple of dummies, deliver a defence slitting pass...I mean how difficult can it be?

We got changed in the first team changing room...given our kit like proper footballers...shin pads and everything and then we were out through the tunnel and on to the pitch to the deafening roar of silence. This was my moment. 4 teams playing a round robin tournament of 20 minute games which meant three lots of 20 minute games...how hard can that be?

It was the first three minutes that threw me...it's a sodding long way over the sods of White Hart Lane...really, it's miles...by the time I'd run over to the wing where I was starting I was out of breath. The manager spotted this and put me in goal for a bit...it was a half a mile run from the half way line to the goal. It's much closer on tele...then it turns out the goal is huge and I have to "cover the ground"...well sorry to the earnest defender who was taking it dead seriously..."bring it keeper, bring it, bring it, bring it" to a man who has lost control of his lungs, legs and liver (too much red wine the night before) will always be met with a feeble kick that travels barely 10 feet. We lost. Twice. I can't remember the other result. I was dead.

The day after I was aching more than I've ever ached before..and believe me I've ached...And so I have rung Capello and told him of my retirement from international football thus abandoning my dream of a late call up to South Africa...and I promise I will never again berate a player that runs the length of the pitch only to scuff his shot...When Saturday comes I’m watching.

R and R

2010-05-02T21:28:00.000+01:00

Relapsing and Remitting or Rest and Recreation? Quite similar really. Lots of recreation during remission and lots of rest in relapse. And that remains both the nightmare and the godsend of this strange thing. Two years after diagnosis I still meet people that say oh, I hear you're ill and then look at the currently healthy me with a slightly suspicious expression. Well, you should have seen me from March 26th to April 2nd is what I want to say but it’s not a terribly convincing response. Not because it ain't so but because when in remission I really do begin to think I'm not ill at all and therefore I subconsciously start to show just how healthy I am. Not that I break in to star jumps and squat thrusts during the conversation but I do find myself telling people just how active I am at the gym, exactly how many minutes I spend on the rowing machine and how heavy the weights are. It's like a sort of health tourettes. I can't help it. I burned 400 calories during a spin class just pops out.

And that was my mood when I was requested to attend Clinical research for an "out of hours meeting". On my return from Africa last month I had felt obliged to tell them about my lack of legs in March and I was pretty sure I'd be in trouble with them. Mainly because the paperwork I signed at the beginning of the trial specifically says that when experiencing symptoms of relapse I should contact them...but...and this was my argument, it doesn't say anywhere that I shouldn't fly to Sub-Saharan Africa before telling them. I followed this line of argument with a detailed list of star jumps and squat thrusts undertaken and then my final coup d'gras...35 kilos.

Something about the way they laughed, shook their heads and sent me to the toilet with a jar didn't convince me I'd won the argument.

Ashes to Ashes

2010-04-25T21:34:00.000+01:00

So the ash cloud from Iceland threatened to derail (surely deplane) my travel plans. By Tuesday night I should have finished a show at the Hard Rock Cafe in London and headed for a hotel in Heathrow ready for an early morning flight to Moscow. But at 8pm my flight was cancelled and British airspace was closed for the foreseeable future. At some point that evening I suspect a large amount of money changed hands because by 11pm British airspace was miraculously open and I was once again heading back to Moscow.

I landed at 9pm and by midnight I was back in the comfort zone that is Hotel Ermitage. Hotel Ermitage is Fawlty Towers transposed from Torquay to Moscow. The staff are so pissed off to see customers it becomes a sport to see..
a) How long it takes to make a member of staff smile
b) How many members of staff you can make smile in a 12 hour period
Of course the answer to a) normally exceeds the limit of b)

Naturally there are no lifts to the fourth floor which is where I am always placed...infact I have been placed in room 412 on four out of five visits. Floor 2 seems to be mysterious floor, accessible only through a large oak door, from behind which emanates the sound of muffled Euro-house music. One gets the distinct impression that the rest of the hotel is engaged in some extravagant party to which everyone except floor four is invited.
Well me and my colleague bucked the trend and started a floor four party on Thursday, leading to impossibly heavy drinking, wild music, games of Russian charades and games of Russian roulette involving Chili-Vodka. All of which in turn led to forgetting all about injections...I suspect this is the only connection (and tenuous at that) to MS and the reason for this blog. I apologise but when you’re having this much fun...

Breakthrough

2010-04-18T19:20:00.000+01:00

Back in the drizzle of the UK and everything seems a little pale and colourless against the multi-coloured visceral thrill of Africa. My MS symptoms which caused my first outing with a walking stick have now been upgraded to a relapse by the good folks of clinical research. What's more, because I'm on drugs this is called a breakthrough relapse. The moment I learnt that I've been stuck with the Doors in my head....break on through to the other side...Now Jim Morrison never let anything break through his drugs.

Talking of breaking through, my intrepid brother has been busy breaking though the pain barrier in search of extra funds for MS. This morning he ran the Brighton marathon. If you wish to donate you can via...
www.justgiving.com/seemed-like-a-good-idea-at-the-time
And finally this week promises to be a new kind of breakthrough for me...If Icelandic volcanic ash can be persuaded to abate and allow some flying then I shall get a kind of Phil Collins type experience. Following two shows at London's Hard Rock on Monday and Tuesday I will hot foot it across to Russia to play keyboards in a show in Moscow on Wednesday.

Pictures of Malawi

2010-04-11T13:11:00.000+01:00

When everything is this beautiful, joyous, sad, uplifting, mad, inspiring and memorable it's difficult to write about illness...

Malawi

2010-04-04T10:13:00.002+01:00

Well, what a long time a week can be. Last Friday it was that I woke up and found my right leg unable to support my weight. Getting up the stairs required huge effort. In 72 hours I was flying to Malawi. Not a good time to lose mobility. Things went down hill during the day. For the first time people at work started saying are you alright, you’re limping? By Saturday the dull, nagging numbness that consumed my right leg had started to move to the left. Things got so bad I was forced to go out and buy a walking stick. Things improved a bit and I managed the last show on Saturday night and crossed my fingers for the next day.

Sunday was a marginal improvement again. Enough to encourage me that I could manage to get to Malawi. I could see in Fi’s eyes that she thought I was deranged for even trying it but I’d already packed and now I had a stick anything was possible. We got to the airport. While I lent on the check-in desk the kids took it in turns to limp up and down the airport with my stick. You could see the other passengers looking at us with sympathy...a whole family of limping English people for god’s sake. ..

And then all too soon I was on my own boarding a plane bound for Nairobi. Me, hand luggage and the stick. During the flight I found that my right leg was gaining in feeling but crossing my left leg could only be achieved by manually lifting it over the right. I dozed fitfully for the 8 hour duration. I was no better at Nairobi but the luggage was transferred automatically for the Lilongwe flight so I just had to limp and lean with the hand luggage. The four hours to Lilongwe (the second quietest airport in the world) via Harare was entirely slept. Which left me with a four hour wait for the final flight to Blantyre (the quietest airport in the world). I sat with my leg up and sipped a beer or was it two, could have been three, until I was called to board the Malawi Air flight. I made my way towards the boarding gate. Suddenly from behind me came a commotion.... Sir! Sir! Sir! Please wait... the bar man caught up with me just in time....here, you forgot this...and he handed me my stick. Malawi was going to be just fine.

Zikomo.

the writer, the actress, the singer and me

2010-03-25T15:22:00.000Z

Finally got to meet the other trialists in my group this week. They have been randomised to the Alemtuzamub and until now have just been the voices next door. Last March, as I sat on my own with my steriods and rebif I could hear them in the room next door, getting dosed up, chatting, laughing. It was their party and I wasn't invited. Well, I'd been invited to sit next door which was worse than not being invited at all. It was like arriving at school on Monday morning and everyone talking about the party they'd been to on Saturday night and you'd known nothing about it. Or maybe that just happened to me. And here it was being replicated 30 years later.

And so I arrived full of indignant intent like it was their fault...I'm cool. I'm good. You're all pals and I'm just the outsider on the cheap gear. Just ignore me. You stick with your posh drugs. Don't share them with me. I'm just fine and dandy.

And then they ruined it. They were all really friendly. Open. Chatty. Even the writer who said she was a bitch wasn't at all. After a few hours I knew more about them than I know about people I've known for ages. Everyone a different story. Every experience listened to. Every answer respected. Stories of love lost and stories of love found. It was beautiful and I'm welling up now.

I have no idea where this has blog gone...don't be ill on your own I suppose. No, be ill with interesting people. That's the answer. Maybe I should start an ill-friend finder website. Find your perfect ill partners.

The art of Poo

2010-03-21T21:24:00.001Z

It's a big week in MS world. The trial has been running for a whole year so I'm back to Whitechapel for an infusion top up and some comedy tests and then on Sunday I take the plunge and fly to Malawi via most of Africa it seems (it's a budget flight so I have three stop overs). Regular readers will know of my fear of flying so four flights to and four flights back should pretty much cure me of that. A sort of cold turkey for aerophobics (I looked it up on Wikipedia)

First things first though, I have three mornings of cannulas being inserted and then a couple of hours of steroids and anti-histamines flushed through me. The people on the new drug need this to counteract the side effects of the new drug. I have to have it to prove that the people on the new drugs haven't been made better by the drugs administered to counteract the side effects of the new drug which I haven't been given. I've got the old drugs. They don't need extra drugs to counteract side effects. But I get the extras anyway. In trial world we call that pulling the short cannula. Although whichever cannula you pull it seems far too long to go in a vein.
It seemed sensible to spend the day before this taking in some art and courtesy of arty bruv Paul we whipped round the Chris Ofili exhibition at Tate Britain. This was the perfect bridge between a trial for an illness that make you feel shit and travelling to Africa; modern art with elephant crap stuck to it. As elephant poo art goes it’s definitely the best I’ve seen.
See you in Malawi.

The sound of science

2010-03-12T10:00:00.001Z

An MRI scan is a bit like an avocado really, well, much more expensive - hundreds of pounds for an MRI against avocados at 3 for a pound in the Turkish supermarket down the road, but they are both an acquired taste. And once acquired they are a bit addictive.

There's something very Stanley Kubrick about the metal cage fitting over your head to hold it in place and then being rolled into a metal cylinder only slightly bigger than you. In fact, being a decaying London hospital it's got a uniquely 70's Sci-fi feel to it. Holding a panic button in one hand whilst staring at the upside down mirror lets you see your potential saviour in the control room. They take on an other worldly context. You presume they're discussing matters of great science or at the least the progress of your scan, but in the back of your head you know full well they're talking about last nights Eastenders.

But it's the sound that I love. The clunking, the whirring, the booming bass synth noise. I can spend hours trying to work out the time signature of this ever evolving magnet symphony. Which is useful 'cos it takes hours to scan the brain to the googleplexsmillimetre. Steve Reich wrote some of my favourite music with his 'phases' series. 'MRI phase' is going to be my next project. A piece for three MRI machines slightly out of phase. I'm off down the Turkish supermarket to see if they've got an offer on.

In the footsteps of Madonna

2010-03-07T16:53:00.000Z

Finally some excitement in trial world, something to challenge the trialists of Whitechapel. I've been invited to travel to Malawi to work on a music and theatre project with a company called Nanzikambe. Can I go? This will cause some scratching of heads...there's inoculations to consider - Hep A, Hep B, Hip-Hop, Typhoid, Typhus, Typhoo...Then there's malaria tablets...and it's a Chloraquine resistant area so requires Malarone. What's more there are long haul flights in pressurised cabins leaving me in a rabies present environment. And my tetanus is out of date...How will my Rebif travel...24 hours in planes, trains and automobiles...this will get them thinking. I sent off my e-mail laying out my travel plans. Twenty minutes later there was a reassuring ping in my inbox.

No problem. Have a good trip.

So that's it then. March 28th 8pm. Heathrow Terminal 1. Kenya Airways calling at Nairobi, Harare and Lilongwe. I shall try not to come back with an orphan.

I wear it well

2010-02-27T17:33:00.000Z

Spent this week in Moscow. My favourite MS city. Freezing outside. Boiling inside. We did a workshop in a school one morning and the heating was up so high I wanted to go out and buy some shorts. Alas I was stuck in thermal long-johns and jeans ready for the snow drifts outside. My mother had sent me some thermal gloves she found in a catologue. They turned out to be fingerless wet suits for hands. The fingerless element didn’t work to be honest. Warm palms and freezing fingertips. I had to go and buy some ordinary gloves to cover the thermal fingerless ones. This resulted in really hot palms and fingertips at the perfect temperature. Maybe if I cut holes in the ordinary glove palms I could create the perfect Multiple Sclerosis twin layered all weather thermal gloves. I could market them in MS monthly. Hats are the other neccesity in Moscow. Fiona bought me a giant wooly beany, far too big and far too wooly. It was perfect.

Reasons to be cheerful. Part 3

2010-02-14T22:02:00.000Z

It's a year since I started writing this blog and it feels right to end the year on a positive: Part three of the advantages of MS. At lunch today I was discussing the concept that there is too much "feel good" factor being attached to major illnesses. Too many people writing too many blogs saying "...it was the making of me"..."if it wasn't for the illness"..."I discovered myself for the first time when I was diagnosed"...etc.

I can't pretend to have made such life affirming discoveries. When all is said and done I'd rather not be writing this blog. I can however state that MS has meant that I can walk on hot paths between water slides in Spain with no pain.(Aug 18th) It has meant that I've met some people that I never would have passed the time of day with.(Aug 25th) And finally, continuing my Ian Dury title obsession, we get to "Reasons to be cheerful. Part 3"...London Town.
My monthly trips into a central London hospital have meant that I've discovered the great city all over again...and more. Buying a dodgy jumper at Whitechapel market, a stroll down Commercial Street towards St. Pauls, over the Millennium Bridge to the Tate Modern, strolling down the Thames past Gabriel's Wharf and on to the Southbank, taking in a play at the National. As I walk up to Waterloo I can enjoy the good humoured banter between bus drivers and cyclists.."Get out of the f***ing road you w****r". I can pass an unconscious drunk under the bridge, take the tube up to Piccadilly, discover an obscure gallery before walking up to Oxford Street for some mass Primark shopping. Experiences that remains resolutely London and have nothing to do with illness. Don't wait until you're ill. Whatever your city, whatever your life...go and grab it now.

Rhythm-n-ning

2010-02-07T19:35:00.000Z

I've been feeling distinctly Thelonius Monk for the last couple of days. All stiff fingered and discordant. I can't play like him of course...It's just a good description of my health. I'd had a few weeks off from numb hands and pliered feet, which makes the return of it all the more unwelcome.

We're remounting a production of A Midsummer Night's Dream for which I wrote an annoyingly difficult piano treatment of Oberon's Take hands with me and rock the ground speech - all syncopated semi-quavers. When I tried to play the thing it was far more syncopated than originally intended and it sounded more of a quiver than a quaver. My fingers were not playing along, mainly I suspected, because my arms and legs weren't.

Me and the eldest child went for a long cycle ride in the hope of exercising my limbs into life. I was admirably impressed with her dedication to exercise when after about 100 yards she said...we must have been going for about 3 miles by now. Shall we get a hot chocolate and go home? That was my kind of exercise. When we got home she decided to practise her flute to which she demanded some piano accompaniment. Tune a day book one flute accompanied by hopelessly syncopated wrong notes. This was beyond Thelonius...this was Stockhausen meets Cage and gets a headache.

Still, I have a few weeks in which to re-discover my inner Monk...but until then here is something Thelonius made earlier...if I could be half as hip as this...

http://www.dailymotion.com/video/xb5v0r_rhythmnning-thelonius-monk-1961_music

There ain't half been some clever bastards

2010-01-31T14:17:00.000Z

Like a weird sect we converged on Clinical research for a conference on MS for people with MS and their families. It was a research day about research...a re-research. Coffee, iced-buns and colour brochures. They were all there....Prof G, Neuro Bond, Miss Moneypenny, Dr. Hugh Grant, New Nurse...even the man that first thought " I know, Chinese hamsters...bound to help MS". This was like a coming together of all the great minds of Neurology, like an all star Jazz concert...no, this was bigger, this was Live Aid for Neurolgy...NeuroAid featuring the NeuroAllStars. One after the other they flaunted their brains...riff after riff of scientific nuerospeak bought the audience to their feet. "Hello Whitechappel...let me hear you say Oligodendrocytes"

Dr. Miles got the crowd laughing and roaring their approval at his "death is not a good result" routine. Nuero Bond slayed us with his dangers of PML lecture. And then the main man...Prof G, the G man, Super G, G to the max...let us know about the future of clinical trial research into MS. And then it hit me...all these clever bastards are working their collective neurons off to cure people like me. These people invent molecluar sized brains to deliver proton sized anti-inflamatory drugs to specific white blood cells to repair myelin on 180, 000 kms of my axoms. There ain't half been some lucky bastards...me.

Media watch

2010-01-24T11:55:00.002Z

It's been a busy week in the media, even by MS standards

On Monday we had new oral tablets that will do what the injections do at the moment - Fingolimod and Cladribine Tablets http://bit.ly/8ILSCT
Unfortunately Fox news reported a big BUT... http://bit.ly/4yRqA3

On Wednesday the Daily Mirror reported on a pioneering operation
"Many experts believe MS is caused by a faulty immune system, but a number of doctors now believe damage caused to the nervous system in MS is actually from poor blood flow in the chest, neck and head."
http://www.mirror.co.uk/news/top-stories/2010/01/17/have-doctors-found-a-cure-for-ms-115875-21973347/

On Thursday another new tablet (Amprya, generic name dalfampridine formerly known as fampridine SR) promised to do even more:- http://bit.ly/55yneE

On Friday, mice, obviously feeling outdone by the hamsters got involved: -
A mutation in a gene called ZFP191 causes central nervous system myelination problems in mice that are similar to what occurs in humans with multiple sclerosis, new research has found. http://bit.ly/55yneE

By the weekend there was reports that plenty of sunshine will help:- http://bit.ly/6Xsfo2

And on Sunday we all decided to move to New Jersey :-
Trenton: Legal pot, for the sick: http://bit.ly/7THsuY

8ve

2010-01-17T21:25:00.000Z

Finally got to the end of the run...opened December 7th - closed Jan 16th - slept Jan 17th.
Everything held out pretty well. Lost my left hand in the last couple of shows. Normally I have a reasonable pianist span (type that one carefully)...about a 10th, in some positions an 11th...nothing like Oscar Peterson's alleged 15th...but no piano I've ever played has complained. But anyway, there I was looking forward to the final bars of act two and getting to the altogether more pleasurable bar front of house when my left hand faltered. When this happens it feels a little bit like someone elses left hand is trying to get out from inside my left hand and they're using an ice pick to do it. Unfortunately this sudden turn of events left me groping for a minor 6th let alone a strident octave. I spent several minutes of one of the "acting scenes" (what's the point eh? Just cut to the songs) trying to coax my fingers to full stretch which the sax player mistook for obscene gesturing at the audience, but to no avail. Then I remebered. Bank C, Preset 156 - Octave Piano. One finger, two notes perfectly spaced. Ha! Technology laughing in the face of MS.

Cat and Hamster

2010-01-13T22:56:00.000Z

It turns out that I'm not the illest member of our household. There's been a bold attempt to steal my thunder. The cat is ill...She has a thyroid problem which is ironically a potential side effect of my oriental hamster ovary injections....Maybe she's been sneaking into the fridge when we to go to bed and stealing my pre-filled syringes. Can't blame her. Liquid hamsters to go. It must be the cat equivalent of a chinese take-away on tap. She now has little blue pills to combat the thyroid problem (her drugs are more expensive than mine it seems)and everytime she takes one she spends alot of time turning round and round and round whilst lying on the floor, manically chewing her paw. I should swap meds with her...that's roughly what little blue pills did to me on Friday nights in the 90's - except the paw bit obviously.

A right estate

2010-01-03T21:38:00.000Z

This has nothing to do with MS really...but in the best tradition of the butterfly effect there is always a connection. So last Tuesday the snow came down. It had been fine until rush hour then, when traffic was at its heaviest, the snow from a Phillip Pullman novel fell, and fell and fell. Pretty soon the traffic ground to a halt. By the time the show was due to go up there were far more people stuck on the road outside the theatre than in the auditorium.

By the time the show came down travelling by road was like ice-skating for beginners. That night we nursed our car home and parked up outside our flat as usual...But that night someone, in a car much bigger than ours slid down, across and up the road simultaneously. Playing a human version of pinball they smashed into three cars leaving ours beyond the value of a worthwhile insurance claim. Very thoughtfully they forgot to leave their details.

And that is how we found ourselves on New Year’s Eve sat in a car show room. As bad luck would have it the heating in the show room had broken down and by the time we got to test drive the new (second hand) car I was frozen through. When you have MS it seems to take ten times longer to thaw out. Hands, feet and bum were numb as hell by the time we got in the car. And then I discovered probably the best cure for MS available...forget all these infusions, injections and this stem cell research, abandon DNA manipulated hamsters...just give me a heated driver’s seat in a second hand estate car. I'm quitting the trial and taking an HND in interior car design.

My (insensitive) Left Foot

2009-12-20T14:35:00.000Z

Back to Clinical Research for the quaterly check up. The usual selection of hop, skip and jump. The walk up and down Whitechappel was brisk and cold but proved that I can still walk. My eyes which were 20:20 two weeks ago at the local opticians became a blurred mess for precisely the lengh of the eye examination (for reasons best known to my optic nerves). I couldn't tell the T's from the Y's and then they turned out to be 7's anyway.

The balancing test is always an each way bet with me. Balance has never been my strong point...sober, drunk, pre or post MS...I've never got the hang of it. I am quite capable of falling off the floor, so what chance do I have with eyes shut, standing on one leg with a doctor pushing me?

Down to the hitting me with a hammer (reflexes fine) and then the stabbing me with a needle..ouch-ometer is fine, yes it hurts...except...there's a pause from the Doctor...my left foot is "not behaving"...it doesn't hurt...several stabbings later and my foot is "not reacting correctly". It has less feeling than last time and is marked down on my chart. So next time I put my foot in it remember, it's insensitive.

Half hour call

2009-12-15T22:34:00.002Z

Such is the lot of the theatre pit muso that the half hour call means half an hour to inbibe a quick drink before treading the path of least resistance to the band pit. The pit in our theatre is marooned from an exit. The only way out when you're in is through the audience or across the stage. Neither of which is desirable in the middle of a show. It means a certain amount of forthought.

1) Never fill your bladder beyond the length of the first half.
2) Never contract food poisoning before entering the pit

Added to this has been a most unwelcome bout of IBS, which anagramatically combined to give me BIMSS. And that is quite descriptive of how my stomach has felt. My Doctor said it was stress related...have you experienced any life changing events in the last year, eighteen months? Well yes, if you remember you diagnosed me with Multiple Sclerosis. Ah, yes. That's stressful enough.

So now you see the relevance and indeed fear of a no escape pit. But I have found that just the right amount of red wine combined with just the right amount of gaviscon does the job quite succesfully. We've just had our 5 minute call....last chance for the loo.

Symantics

2009-12-06T23:29:00.001Z

Struggling to write anything interesting. Felt shit for two weeks now which is dull reading. Ill's not funny. That's different from I'll not be funny. What a difference three letters and an apostrophe placement make. One's a choice, one's a pain.
There we go...I'll be smiling tomorrow. Which is different from I'll be milling tomorrow.

All the World's a Stage

2009-11-29T20:59:00.000Z

Last week was an appointment with the new vampire but at the last minute a "must do" meeting at the Hackney Empire came in. Never mind said Ms. Dracula, I'm in Dalston for an earlier appointment, I'll meet you at the Empire. I should have had my suspiciouns. The new phlebo was called Sally Diamond. How showbiz can you get? I expected tassles instead of a fob watch.

The only spare room at the Empire was the studio theatre. The only usable seats were on the stage as part of the set. In the room above the studio theatre was the band room and a bad ass band for the Hackney Christmas show was rehearsing. Damn they were funky. And so me and Mrs. Diamond sat, positioned infront of an imaginary audience drawing blood and checking pressure. And then the band joined in.
There'll be a sharp prick said nurse as she puntured my arm.
Can you feel it? played the band upstairs.Can you feel it?
Then she asked about the injections of rebif chinese hamsters.
The band cracked straight into Level 42's seminal hit Chinese Way complete with unfeasable Mark King baseline. As Ms. Diamond dropped a pippets worth of my blood onto a slide I was convinced she was singing along. And then she definitely shuffled her feet choreographocally as she returned with a theomometer.
Hot in the City, hot in the city tonight filtered down from the room upstairs.
If all the world is a stage then it's a full blooded musical. Directed by David Lynch.

Cold Feet

2009-11-15T20:18:00.000Z

My cold feet were back last night. I woke up with frost bitten toes and then couldn't warm them up how ever many layers of quilt I trapped them in. Foreigner (Cold as Ice) got stuck in my head and sleep slipped away til dawn was up. We were down to one offspring thanks to a sleep over party of yesterdays "best friend", tomorrows "I hate her" and next weeks "bestest ever friend", so me and the youngest, just the two of us (without Bill Withers) had a quality breakfast together. By the time I had the papers in front of my eyes my toes had melted and all aches had decamped to my arms. It's probably a sign of stress.

Tuesday is our big fund raising gala at the Royal Albert Hall. The last time I played at the Albert Hall I was a sprightly 20 something playing with a succesful, all be it aged pop band. I've always suffered nerves before performances. People say that it's good to get nervous - it channels the adrenaline. Rubbish. I've never understood how to channel anything. It just makes me feel sick. And if there's nothing quite like a super-sized venue to bring out the cold sweat of fear then there's nothing like the stress of fear to bring out the numbness and tingling of MS. Or maybe I've just got cold feet.

Conceptually Speaking

2009-11-08T14:48:00.011Z

Feeling full of health and with a bounce in my step I headed off to watch the mighty Spurs play against Sunderland. If there is anything more guaranteed to trigger an exacerbation of symptoms it is watching Spurs play. Nearly two hours of sitting in the cold watching the most stressful team in the Premier League hoof the ball around in search of the beautiful game. They didn't disappoint me. They stumbled around, misplaced passes, scored an offside goal, gave away a penalty, saved the penalty, scored an unlikely second and held out for a home victory that propelled them into forth spot and me into numb hands.

Then it was off to meet my brother for a spot of conceptual art at the Tate Modern. If my MS was an art form it would be conceptual. It wouldn't be renaissance...too precise. It wouldn't be impressionism...too gentle. It might flirt with the randomness of Pollock. It would have a passing nod at Dali's weird surrealism and sometimes the insides of my arms feels like a Hieronymus Bosch. But no, when all said and done, to me it is conceptual. It is like a temporary installation - but one that reappears when you least expect it. And then it leaves you scratching your head thinking "what the hell is all that about then".

I'm warming to this now. Next week I shall consider what 20th century music MS would most resemble: Stravinsky's poly-rhythmic dissonance of the Rite of Spring or the Osmond's Crazy Horses?

Perspective

2009-10-29T08:22:00.013Z

Nothing of interest has happened to me in the disease fighting world this week. A healthy week all around. I've been fine. Totally ok. So let me tell you about my friend Samuel. He's fighting a really nasty disease. His disease is Robert Mugabe. His disease has already killed members of his family and robbed him of his home. I've been recording his story now for several months. By day he pretends to be a janitor but like Hong Kong Phooey he is really something totally different. Just as mild mannered though.

Born in South Africa to Rhodesian (as it was) migrant workers he lived in the townships of Soweto (Zone 12 he tells me). On June 16th 1976, aged 13 he walked to school as the Soweto uprising raged around him. His parents moved him to the relative safety of Rhodesia that Autumn to live with his Uncle. In November he attended a rally where Joshua Nkomo implored young people to leave Rhodesia, seek an education in exile and be ready to return to the country as the rightful majority rulers. The following Spring after borrowing money from his Uncle on the pretext of buying training shoes he bought a bus ticket to Botswana and began the long journey into exile. He was determined to change his countries fortunes - to over turn the minority white rule of Ian Smith's government. From Botswana he went to Zambia where under the guidance of Zapu he was educated, first in Lusaka and then in Sofia, Bulgaria with members of the young ANC.

He returned to the new Zimbabwe to discover Mugabe and his Zanu PF had prospered where Nkomo's Zapu had failed. For him and many others the freedom that revolution and independence were supposed to bring became a nightmare. Members of his family, including his beloved Uncle were rounded up by Mugabe's dreaded Korean trained Fifth Brigade. His uncle was found dead at the bottom of a mine shaft. Samuel fled to the relative safety of South Africa - a country ruled by the apartheid policy of the National Party.

So when I'm feeling sorry for my self about a bit of MS I go and chat to Samuel.

The terrorist within

2009-10-22T21:22:00.006+01:00

Why is it always a surprise? It shouldn't be really - it happens often enough. But its the same every time. For some reason after two or three weeks without any sign of the ms its just a complete outrage when it reappears. Of course you don't really think it's gone...but you can never really remember what it feels like to have that numbness creep down your arms until it creeps down your arms. At that point I tend to say...aahhhh there you are.

Or am I'm beginning to personalise the ms too much? Shouldn't I remain in defiant anger with it? I should of course refuse to negotiate with it until it withdraws completely from my body. Or perhaps it's time to talk to it. I could demand a phased withdrawal from my arms (the ms equivalent of disarmament) before I would discuss terms for peace. Of course I would have to agree not to inject hamsters whilst discussions took place. There would be an agreement to allow an MRI scan under the watch of UN monitors. There would then be much diplomatic coming and going (probably in Norway) whilst we agreed the terms for a ceasefire. But then no doubt one of us would break the conditions. Some rogue element would remain in my hands ready to attack....and would I really trust it enough decommission my syringes? Surely I'd keep some in hiding at the back of the fridge.

Maybe I am taking this too personally after all.

Got to get up to get down

2009-10-16T15:07:00.004+01:00

What is the correct etiquette for giving up your seat? We had a right old game of musical chairs on the Tube the other afternoon. The walk from Northern line to Central line at Bank is a ridiculously long one followed by loads of stairs up, and up and up by which time my legs were feeling decidedly shaky. I've been very healthy this week - I've been in Moscow so it's probably the vodka - but when my leg, especially my right leg goes numb it's a pain in the arse. Well...slightly lower to be more accurate. So it was a relief that I could find a seat on the Tube. Then some old lady with a walking stick gets on, so I feel obliged to get up. Next stop an even older man with stick gets on. Two people simultaneously get up for him leaving me with the chance to take one of the newly vacant seats. I get a slightly dirty look from the now standing youth that was being generous to the old man with stick but not to the middle aged man with shaky legs. What are the chances of this though...? At the next stop an even older lady but without a walking stick gets on. She stands staring at me...now...and here's the dilemma...is she old enough to get the seat? Do I have enough MS to keep the seat? Is my MS visible enough to let other passengers know I'm not being a selfish bastard. As the door starts to shut I can take it no longer...I get up...the old lady gets the seat.

Bloody Good Riddance

2009-10-10T19:49:00.002+01:00

Now it’s all kicked off...the phlebotomists have been sacked and a new company of phle people bought in. I’m not surprised. The last vampire to visit me may have arrived on time but...

I haven’t got my kit with me he says

Now when I was a kid if you forgot your PE kit you had to do the gym session in your underwear...and let’s face it at the age of 7 it was no big deal. Now call me old fashioned but the idea of blood man taking three phials of blood, and various other readings dressed in his underpants wasn’t appealing. Then it turns out his “kit” is pretty much everything he needs except the clothes. Needles, thermometers, gloves, steri-wipes, test tubes, glass plates for doing weird stuff with. You name it he didn’t have it. It was a bit like me turning up on stage and realising I’d forgotten a keyboard. Which all joking apart did actually happen once. Very embarrassing...had to leave stage, go back to dressing room, get the keyboard, return to stage, plug it in....

I digress, so anyway phle-man says...Do you mind if I nip back to the office and get my kit. Quite what the alternative was I’m not sure, it was hardly a case of some hot water and towels sufficing.

Of course say I...where is the office?

Hammersmith.

Hammersmith? Hammersmith is an hour drive each way in a post apocalyptic London where all other vehicles, traffic lights and speed cameras have been destroyed. By now it’s 45 minutes to rush hour. I’ll be lucky if I see him tomorrow.

And now it looks like I’ll never see him again. So farewell inefficient blood suckers. Let’s see some phlebotomists with some real bite. Tomorrow I go to Moscow and when I return the new company will take three phials of vodka from my veins.

Wasted

2009-09-28T23:50:00.010+01:00

It was accidental but I suffered a malfunction with a couple of injections last month. I loaded one of them inaccurately and it just went phut in its cylinder. The second time it went phut outside the cylinder but inside its cap. The resulting high pressure acted like a hydraulic pump and sent hamster ovaries flying across the room. This flying medicine landed in my daughters open mouth. Her mouth being open in shock because I was screaming "fuck, fuck, fucking hell." I'm hopeful that she has now been immunised against MS and that she doesn't repeat the phrase at school tomorrow.

I explained all this to Clinical Research. (the malfunction - not swearing in front of my 7 year old) ok they said that's two shots wasted.

Well I wouldn't go that far I said. They weren't wasted, they were just...not....successful.

That is what we'd call wasted said Clinical Research. You have wasted them

Wasted sounds intentional I said This was more a case of premature injection. It can happen to anyone.

New Nurse was unsympathetic. Wasted she wrote in her report.
And so it was. I guess it's all a case of semantics. Once upon a time I used to buy drugs and then take them to get wasted. Now I'm given drugs and when I fail to take them, they're wasted.

Cycle of life

2009-09-25T23:58:00.009+01:00

Trial time. When the assessing doctor says how is your walking? I say fine. When he then says...can you walk for a half a mile? I say yes again. And that is where we leave it normally. It's a mutual trust thing... Can you walk half a mile? Yes. You don't expect him to say...prove it. Let's go. And so there we were walking down Whitechapel half way to Liverpool Street and back. I refused to answer the erectile function question.

This was the six month test. This was boot camp. This would sort out the men from the ms. It was all change at Clinical Research. NeuroBond was gone. Either eliminated by Sean Bean or "retired" by his own operatives. Maybe his license to interpret MRI's had been revoked. We weren't told. Nurse MoneyPenny was "on annual leave". Suspicious eh? Nurse Blofeld remained, needle in one hand, paperwork in the other....whatever had happened, Clinical Research had changed. It's usual European efficiency was over. Replacing it was the unmistakable whiff of Monty Python. Clinical Research had gone comedy. EU doctors with preposterous accents were out and well spoken public school alumni with preposterous accents were in.

Dr. Miles wore a red bow-tie. Hi he said these neuological tests can be a bit humiliating so I find it helps if I join in. When I ask you to hop, I shall hop with you...and so he did. We hopped together, walked on heels together, tip-toed together...we walked down corridors together. We gazed at eye charts and added sums together....it was a love in of neurological proportions.

By the time we got back from our walk to Liverpool Street it was time for New Nurse. New Nurse was under instruction from Blofeld. With Blofeld's record of spilling my blood this could have been worrying but New Nurse broke all records. She was the best blood taker. Subtle, underplayed needle invasion followed by excellent casual chit chat while she secured the requisite eight test tubes of blood from me. Terrific needle exit was followed by perfect plaster placement. This nurse knew her shit. This was English efficiency. This was a system we could trust in.

Blofeld came in to check the paperwork. Did you mean to put his date of birth in the 'last menstrual cycle' box?

The percentage game

2009-09-11T21:41:00.012+01:00

I'm six months into my trial comparing Rebif and Campath. Which for me means six months of Rebif. 78 injections. 78 Chinese hamster ovaries. Plus a combined total of 156 paracetamol and ibuprofen tablets. Should've got the Boots Advance card. I'd have enough points for a hot water bottle by now.

I was explaining this to someone the other day. (not the hot water bottle) So is it working? they said. Good question. Is it working? The theory of Rebif is that it won't cure you. It will reduce your symptoms and relapses by up to 30%. Which means it's really rather difficult to state that it's definitely working. How bad would I be without the hamsters? As I haven't had a relapse since I started does that mean the minus 30% has occurred already? Am I 70% more likely to have a relapse now that I haven't had one? Two fingers in my left hand have been numb for some time now. Is that just a 20% success rate? Actually 7 numb fingers would make more sense. Then it would be obvious that the 3 feeling fingers were a 30% direct result of the 3 injections a week. How do I work out the maths for 2 numb fingers being 30% better than they would be without injections? Would a third of a third finger be feelingless? Or should I have a numb thumb?

Am I get getting 30% less sleep because I'm 30% less fatigued or am I getting 30% less sleep because the injections give me insomnia? Am I 30% less likely to forget what I'm talking about? Now that is the question. And the answer is as confused as the question. I think.

In pieces

2009-09-04T19:24:00.011+01:00

Well we finally bit the bullet and booked an impromptu week in a caravan somewhere in the midlands. It was very last minute. Fiona and I returned from our anniversary weekend in Edinburgh at about midday. Maybe its because I haven't been at home for most of August but we immediately got itchy feet... wouldn't it be great if we could just go away again said Fiona...and so while she popped over to the shop to buy a loaf of bread I logged on. By the time she got back we were booked to go. You know that was a flippant and rhetorically wishful statement that didn't require credit card use she said..Too late...an hour later we were on the M1 heading up country to a caravan park.

Now caravan parks are...well...parks with caravans on them and this one was largely inhabited by skin headed men with union jacks fluttering from their caravans and Staffordshire bull terriers straining at the leashes held in their hands. It was an English Deliverance without Burt Reynolds. As I drove in I could hear the banjo.

You know it was definitely a flippant and rhetorically wishful statement that didn't require credit card use she reminded me. It'll be fine I reassured her. The sun's out. We're in the country. Plenty of room for the kids to run about in the country sunshine. Lovely. Then it started to rain in biblical quantities. Ten minutes later and there was a hurricane strength wind to boot.

So what do you do in a caravan in pouring rain with gale force winds and the assembled cast of the English Deliverance peaking though their net curtains at you? A jigsaw of course! That is true caravan behaviour. Rain, wind, cup of tea and a jigsaw. A 1000 piece humdinger of a jigsaw that took up half the floor. It took us half a day to find the edges. I became obsessed...early morning to late evening I was on the floor looking for the piece with half a green leaf against a blue background...and that it how I lost the feeling in my left hand. Hours of sorting through puzzle pieces whilst leaning on my left hand led to pins and needles running up from my wrist into my fingers. It'll go when I stop puzzling I thought. It didn't. I stretched my fingers. Give it five minutes and it'll be gone. Only it didn't go away after 10 minutes. Or after 10 hours. It's been five days now and all feeling in my left hand has buggered off.

We survived the Deliverance but I may well have invented a new MS exacerbation. Jig Saw wrist.

Part Two

2009-08-25T20:37:00.003+01:00

In the interests of a fair temperature comparison I left Spain and went to Scotland. No chance of sun melted asphalt paths there. No burning feet in Scotland. Damp feet, foot rot and hypothermia possibly but not burning feet.

I bought all my needles with their passports and still no-one checked them. It was gratifying when a novice monk in front of me at airport security was pulled over and asked to explain the 7” Bowie knife in his hand luggage. I suspect someone of any racial origin other than white wouldn’t have been offered the opportunity to explain it but there we go. The monk with the knife claimed a hunting hobby and his knife was duly confiscated and he was allowed on to the plane. Is there a conflict of interest there? Praising God whilst hunting his creations with an effing huge hunting knife...

I was in Edinburgh for the festival where a show I had worked on was playing at the Zoo Southside. At the theatre (converted community centre (itself converted from an old school)) I met the wife of our venue marketing manager who has...MS. Blimey, we got on well. Swapping stories of numbness, pins and needles, drugs, infusions, memory loss and the like. We sat like a couple of gossiping old ladies..did your neuro offer you Copraxone? No, but does your nurse answer her mailbox? Doesn’t it annoy you when you’ve got fatigue and someone says..I’m tired as well Yes and do you ever stop mid sentance and forget what you meant to say next? And thus we went on, like we’d known each other years.

She (the marketing mans wife) is a strong lady who’s up for the fight and that is inspiring. So, in what is a simple post about simple pleasures I would like to state for the record a second positive effect of owning Multiple Sclerosis. Along with asbestos feet in Spanish water parks I will add...meeting nice people that you wouldn’t otherwise have spoken to.

Reasons to be cheerful (part 1)

2009-08-18T22:09:00.007+01:00

After 18 months I have finally found the positive. And I shall accentuate the positive. In fact I shall compile a list of positive outcomes of owning MS. It may be a short list, but it will be my list...unless of course anyone else will add to it...which I would welcome. Florida Dave Carey is devising the MSers guide to Orlando and I think the top ten MS symptoms to rejoice about might prove a useful addendum...so it goes like this...

Our annual family vacation to Spain occurred last week. We always head for my late fathers house in Nerja. A beautiful area of the Costa Del Sol where the children swim with abandon and adults relax with a San Miguel and a fish kebab...Now the highlight of this week is the trip to the water park in Almunecar. A sprawling complex of thrilling water slides and thunderous tunnels using sea water and more San Miguel. The down side to this trip has always been the red asphalt path that leads from slide to slide. Cos it gets hot, I mean effing hot. The sun heats it through the day until it's the equivalent of walking on hot coals. British tourists are always spotted by their ridiculous owch–hop–skip–hop–find the shady bit of path–dance. The Spaniards of course stride slowly and lazily across the burning red path with a nonchalance that we Brits could never conjure...until now. And conjure it I did. I knew my soul had lost all feeling (what a tragic statement, I’ll start again) I knew my soles had lost all feeling some time ago when the French Neuro-tester devised the stabbing test. Am I stabbing you with the sharp end or the blint end? he would say. All was fine until he came to my feet when it became apparent that I wouldn’t notice a Scimitar slicing through my old plates of meat let alone a broken cocktail stick (it’s a high tech trial, I can tell you)...but lo! What joy my numb feet bought me in the water park in Almunecar. I strolled, I dallied, I nonchalantly hung out on the boiling red path. I smirked as even a Spaniard winced at the Mediterranean heated asphalt course. ..so next time your wondering what to do with your numb feet....get on a plane to Malaga, drive up the coast to Almunecar, visit the water park and look smugly around at those people doing the hop-owch-skip-owch-find the shady bit of path-dance.

In Pilot's hands

2009-08-05T21:45:00.014+01:00

So, interesting things abound and while my MS sleeps, my guitar gently weeps. That's a lie. I don't play guitar but you can never tire of quoting fab four lyrics. (my brother will explain that lyric is a plural and thus the last sentence made no sense but sod it, I'm feeling reckless). What brings the recklessness on? Well the thing is that many things occur in the MS world....

First, I am issued with a passport, yes a passport, for my Chinese hamster medicine. (no photo required). I have to travel by plane a lot this Summer/Autumn - this is in itself a shame as I hate flying. No, it really scares the bejesus out of me - but Edinburgh, Spain, Edinburgh, Moscow is the quite frankly unlikely list of jet setting destinations that I will be leaving my life in the hands of pilot's for. Now without my passport people might assume I intended to attack flight attendants, inject them with rebif and delay their onset of secondary progressive MS. This could become a new strand of terrorism, maybe a medical terrorism. Doctors could board flights and give passengers Tami-flu (Not Tami-Wynette, I'd worn them of this mistake) or a heavy dose of 'night-nurse'(TM). I realise this could be subject to abuse...

Now along side this, is a warning, about flu. The hamsters are it seems, an immune suppressant. Now when your immune system is suppressed you are more likely to get flu...swine, man, common, bird....it matters not which one...but, here's the cunning plan (bear with me). The side effect of the hamster injections is flu like symptoms...which we combat with paracetamol and ibuprofen...so now, all you users of immune suppressants...are your flu like symptoms a side effect of your immune suppressant or merely your immune suppressant working effectively? I leave it in your hands, which, I should remind you, the latest government guidelines suggest should be washed.

No country for middle aged men

2009-08-01T21:16:00.011+01:00

Discovering I had MS relatively late in my life is one thing. I was 43. It was late onset of MS. Far worse, far more sinister and altogether disturbing has been a recent development. Late onset of Dolly Parton. I know when it began. Beth had to use '9 to 5' as part of her reception assembly. I downloaded it so she could practise it in the car. Wake up in the morning...I have always hated country. But then i-tunes offered to download the rest of Dolly's hits for £3.49. Bargain. Jolene, Jolene, Jolene, Joleeeeene, ...please don't take him, islands in the stream, that is what we are.

What was going on? I was listening to Dolly...no, I was singing along to Dolly in the car. And iyiyiyiyiyi will always lurve yohooooo.... Fortunately it hadn't developed into full blown country. I could still take refuge in Blue Oyster Cult's Don't Fear The Reaper (digital remix). For every 'coat of many colours' there was still a 'Kashmir', for every 'Backwards Barbie' there was still a 'Wish you were here'. I could be strong. I could be anti-country.

And then it went really wrong. Badly wrong. Someone gave me a Jonny Cash album. And before I knew it I had developed full blown country. I tried to buy some Tami-flu but in my confusion I came back with Tami-Wynette. It was frightening. I was short of breath. I started referring to my wife as Lucille. I sent my kids out to work the range. I was offered a trial of Punk but I got randomised to opera. Perhaps middle aged men need country. But I do draw the line at Billy Ray-Cyrus and his daughter.

What d'ya mean he recorded 'Achy Breaky Heart'? Count me in.

Let's (not) dance

2009-07-26T22:28:00.012+01:00

It started during a performance of improvised Japanese contemporary expressive dance. I should explain. What started was my own personal heat wave reminiscent of the great Summer of 76. I was a drought area by 8:30pm. I was on fire. Head to toe. The Japanese contemporary expressive dance thing is more complicated. It was an odd thing to attend and I've probably damaged my children for ever, but attend we did. We came, we saw, we perplexed.

Look, there was a time in my life...I was younger...when (I believe the phrase is) I experimented with mind altering drugs...I was reading a lot of Aldus Huxley, listening to a lot of Pink Floyd and generally discovering things that could make me dance when god alone knows...I hated to dance. It was social phobia overcoming drug therapy with the possibility of a date at the end of the evening. The only trouble was identifying the end of the evening. Anyway, back to the point. This all new MS symptom was a heat rush that was tangibly reminiscent of those heady days. Only it wasn't any fun. It was just a rush of heat with nerve endings exploding and my body heating up from the inside out. A bit like being inside a microwave...although that is, I hasten to add, a guess. Don't try it at home home in order to contradict me...I believe you.

The thing about the Japanese expressive dance thing was that it was more like a mind altering trip than anything I've experienced for 20 years. Particularly when combined with the rush. Dancing across the stage a lady appeared with a large lump of dough attached to her face which she then began to pull apart and throw at the audience. I began to feel a deep seated and uneasy sense of familiarity. A performer that gradually taped herself to a chair with garish red duck tape took me right back to the late 80's. Gradually it all began to blend. MS, LSD, E. It became some weird anagram. I love anagrams. When I've worked it out I'll let you know. Meanwhile I will not dance, expressively or otherwise. It's too dangerous. Thankfully the heat rush subsided after a short intermission. In remission (t).

Can't sleep, won't sleep

2009-07-18T15:14:00.012+01:00

Fear of insomnia...that's what keeps me awake at night. I used to sleep so well. Midnight, snoring, nothing could wake me. Phones, alarms, children...once in the land of nod I was there for keeps, well, 8 hours. Yet I was never one for over sleeping. I liked to be up and about in the morning, not idling by the hours til lunchtime. Yes, sleep was an ordered pleasure.

But not so now. It could be the MS. It could be the hamsters. Sometimes it's the hands on fire, sometimes it's the pliers on toes and sometimes it's just...wide awake time. But whatever it is, something wakes me regularly, however tired or fatigued I may be. Whatever time I hit the sack I'm awake sometime between 3 and 4. And there is a whole strange world that goes on between 3 and 4.

The cat for instance, can hear me coming up the stairs (yes, our house is upside down) from three gardens away. She can be through the cat flap and by her food bowl before I've reached the top step. If perchance I decide to turn over and hope sleep returns the cat has other ideas. Yo, Dave! Wake up, Come on, I'm upstairs. Come on Dave. You know you're awake! Stop fooling yourself... All this is said in a wild miaow that sounds like the onset of being possessed in a sequel to the exorcist.

Talking of being possessed...youngest child at 4 in the morning. She sneaks ever so quietly in from her perfectly adequate single bed to make our double over crowded. Then she has the ability simultaneously put her feet in your head, back, face and chest whilst stealing the quilt with a devious slip of the elbow. Whilst we sleep vertically she gradually turns horizontal until I'm reduced to lying on my side, balancing precariously on the outer 3" of the mattress. Enough is enough and I decide to take my chances with the possessed cat.

Now I'm upstairs I may as well do something...I know I'll switch the computer on and get on with the blog...What shall I write about? I know...Fear of insomnia...that's what keeps me awake at night.

One hand clapping

2009-07-13T20:40:00.018+01:00

What is the sound of one hand clapping?...so goes the Zen riddle. Of course there is no answer to a Zen riddle, just the pursuit of enlightenment. Somehow, I didn't know for sure, but I suspected, Buddha wouldn't be at the National Indoor Arena today.

'Stick it to MS' reached it's climax and Simon and me headed north to Birmingham at the crack of dawn. Six hundred drummers, twelve hundred hands holding twelve hundred sticks...what's the sound? An effing row to be honest. What's the sound of 600 hundred drummers playing quietly? Now that is a real Zen riddle cos they can't. It doesn't function in brain. Drum? Quiet? Bang, bang, bang...We will, we will rock you, rock you. What's the sound of 600 drummers being asked to take a 5 minute break? Bang, bang, thwack, thump, thump, snaaaareee roll, cymbbbal CRASHHHHHH, runaroundthetoms, runaroundthetoms, double snare hit, splash.

After four hours of a deafening cacophony that would have had John Bonham coming back from the dead to complain that him and Mooney couldn't hear themselves think I became convinced that Multiple Sclerosis wasn't such a bad disease. Surely no illness was worse than this hell.

And then we came to the defining moment. The world record attempt. 600 drummers sticking it to MS. Simon was poised, double bass drum pedal at the ready....My ear plugs were buried deep - a sense of impending doom weighing heavily on me. Bang, bang, crash, smash, bang, bang, crash, smash...Then, imperceptibly it began to happen, out of the mists of hell appeared a rhythm, in time, in tempo, a unison sound, 600 drummers together, playing their hearts out. It's like Riverdance meets the Edinburgh tattoo with the Kodo drummers of Japan joining in. Christ, I'm tapping my feet along and bloody hell, Buddha just appeared. What's the sound of one hand clapping? I don't know but the sound of 600 drummers raising money for MS is really good...and it's most enlightening.

http://news.sky.com/skynews/Home/UK-News/Drumming-Guinness-World-Record-Hundreds-In-Birmingham-Smash-Record-And-Raise-Money-For-Charity/Article/200907215337165?lid=ARTICLE_15337165_DrummingGuinnessWorldRecord:HundredsInBirminghamSmashRecordAndRaiseMoneyForCharity&lpos=searchresults

That was the year that was

2009-07-02T20:22:00.012+01:00

And so inexorably the cogs of time have turned until here I am celebrating my anniversary. Not a birthday, not a wedding day, not a 'where were you when Jacko/Diana/Lennon/Elvis died?' (delete as appropriate). But it is a year since my Neurologist, having shown me a selection of lesions in the brain on my MRI scan spoke the immortal words...I think you'd better sit down. I must say that having seen these tiny patches of white in my brain that turned out not to be some careless tippex marks from an over enthusiastic undergraduate doctor, the words It's probably Multiple Sclerosis seemed something of a result...so it's not cancer of the brain? No, it was definitely Multiple Sclerosis. Excellent.

On the way home from hospital the words Multiple Sclerosis seemed to gradually get worse. MS is one of those big illness's that you've heard about since childhood. Of course Neuro had given us the new 21st Century medical mantra...don't google it...which we promptly did...8, 360, 000 results in less than half a second. Multiple Sclerosis is a proper, serious disease. This calls for a cup of tea.

A year later and life has changed beyond all recognition....hang on, no it hasn't. I have injections every other day, but I still go to work every day. I have various pains, aches and numb spots and occasionally I'd rather sit than walk ...but I can still go to the gym. I have some days when I really can't get out of bed but a couple of years ago I had hang-overs that had the same effect. Some times I can't remember things I knew very well a while ago but I'm assured by everyone that my memory has been rubbish since anyone can remember. There are the spasms of course which are generally ignored at home and a bit embarrassing in the pub...but hell, whats a twitch between friends.

Enough of this sitting down, I going to stand up while I can.

Licensed to ill.

2009-06-26T20:24:00.002+01:00

It was back to Clinical research for a quarterly check up…bloods, walking, feet tickling, all the usual stuff. It fact it begins to feel like some sort of international torture conspiracy. The French “Allo, Allo” impersonating doctor was not to be found. Instead was a lady doctor from Spain, which is nice that we’re keeping it in the EU. Lady Doctor from Spain didn't fill me with confidence. This excuse must please me she said but this time first that I test do in English. Many times Spanish we do all the time often, but in English never. I have just been reminded by the trial manager that I mustn’t tell this doctor which drug I am taking as it is a “blinded” test. It’s important that her interpretation of results is not influenced. When she says tell me if I push your fingers down or up whilst she manipulates my toes I’m reasonably confident that I could shout Rebif Interferon beta 1a, three times weekly injection at the top of my voice and she’d be none the wiser.

Next it’s on to a new Neurologist, who seems to have got his jobs mixed up. He definitely gives the impression that he’s a suave, sophisticated secret agent working for MI5. NeuroBond, (licensed to interpret an MRI) sweeps into room 0.07. Hi, Its Dave isn’t it? Dave Carey. Any problems? Any side effects? Flu? Sadness? Paranoia? (Or was that just in my head) Alas I’m free of side effects which makes me a little paranoid. I’m not shaken or stirred as he goes through the usual rigmarole of general check ups and questions. A new nurse enters. She’s 6’ tall, blond and gorgeous. Ahh Miss Moneypenny. Take his blood.

Everyone’s Favourite Nurse has followed through her threat and moved to Southampton so now I’m under the watchful eye of Miss Moneypenny. Alas Moneypenny can’t do blood tests, she is more of a secretarial nurse (she gives me the urine sample jar) so she calls in another nurse. Nurse Blofeld doesn’t take prisoners. She doesn’t take blood particularly well either. Two arms later and I’m feeling like a pin cushion. After two hours I’m released into the outside world and head for the tube. It’s probably me but I’m sure I was followed home.

Rock n Roll Saved my life

2009-06-18T23:10:00.007+01:00

So Shimon, my great friend, colleague and drummer is the only person I know that’s iller than me. He dominates the illness competition. If we were top trump cards he’d win hands down. He tops my MS with CF. He beats my cholesterol with diabetes. Between us we’re injecting 10 times a week which probably makes our studio the most drug abusive recording facility since the Grateful Dead made an album in 1969.

Well Shimon being Shimon with CF has decided to raise some money for MS which means he’s either a top mate or dyslexic. I suspect it’s the latter and at some point he’s gonna be really pissed off that I’m cured and he’s not.

Even better is that in order to raise money for me he’s going to become a world record holder. In Birmingham on July 13^th in aid of the MS society, 600 drummers will beat their drums simultaneously and create a record for the most drummers ever to play together . Birmingham Royal hospital will then treat 600 deaf drummers simultaneously and create another record. If you’d like to make my mate deaf please donate generously. Dollars, Pounds, Euros…all welcome.

www.justgiving.com/simoncooperonline

Lessons

2009-06-13T16:36:00.011+01:00

As my friend B. would say…that’ll learn ya…(she’s got northern roots)…and it did. All last weeks talk of feeling better than I had in years lasted until Tuesday. The ends of my fingers went numb about four o’clock in the afternoon. I had the kids with me, we were going swimming. Quite abruptly the numbness rolled out up my arms and down the legs, ending in the pliers relay on my toes. Swimming was off the menu.

Hey kids, what about we go to the park? I'll sit in the café with a cup of tea, you run around and be children...
Awwwhhh daaad, was the despondent answer.
What about I throw in a treat from the shop, an ice-cream and staying up past bedtime?
How big a treat?
Big as you want.
Hooray! We love Dad! …who said parenting is difficult? It’s expensive, but it’s not difficult.

By the time we got to the park even lifting the tea cup seemed like an effort (full cream milk…should’ve asked for skimmed) and random pains were shooting through my arms. But then the real hell began…a screaming baby with an un-attentive mother. Really, if you’re going to have a baby that screams could you either show a bit of effort in stopping the noise…or go home. Don’t inflict ear piercing baby on everybody else in the café…My cup of tea was shaking, I was shaking, the whole afternoon was going down the pan.

Things settled down a bit during the evening and I put in a good 12 hour shift in the sleep department. By the morning I was cautiously optimistic. That’s the problem with this relapsing-remitting bit. It lulls you into a false sense of security. I could have sworn I had got over MS last weekend. Completely cured.

But by Friday I was feeling fine and dandy again in time for my Birthday. Cured – ill – cured all in the space of a week. We all went to a nice pub with good food and playground for the kids (why aren’t there more of those?) B. got the drinks in and I sat back confident that all was well with the world. Then the spasms started again. Full on jerky-twitchy-what's-wrong-that-bloke-spilling-his-beer-over-there spasms. That’ll learn me.

Rude boys

2009-06-06T16:35:00.011+01:00

Talk about rude health. I'm probably feeling better than I have for years. I'm firmly into remission with little sign of MS. The hamsters have settled down nicely. I'm 7 months without any baccy, wacky or not. I haven't got diabetes. A raised cholesterol level in a recent blood test has sent me running to the soya milk and benecol department. I've given up cheese (which is more difficult than anything I've done thus far for my health). I'm a slave to five a day and oily fish. The receptionist at the gym even recognises me.

In fact, so good am I looking that friends have started to comment....you're looking well...This of course is only said by female friends. Male friends are very different. In fact when a diagnosis of illness comes about the difference between men and women becomes stark. Female friends want to know all about it...what were the symptoms?, what did the doctor say?, how do you feel?, how are the injections?...

The conversation with male friends is markedly different:

I've got MS.

Oh. Did you see the football last night?

Occasionally it reaches such emotional levels as
Oh dear. That's bad news. Did you see the football last night?

Male friends that have no interest in football (I know a couple, weird I know) will steer the conversation on to how much they hate football. It's not that they don't care, but men don't like to talk illness. Men don't like to talk health. We just like to talk rude.

Odd jobs

2009-05-29T18:56:00.013+01:00

Dan, who is my phlebotomist (yeah, my own phlebotomist, enough kudos...) came to see me at work earlier in the week to take my blood samples, my blood pressure, my temperature...to take everything basically....This is obviously not a run of the mill occurrence at work, and believe me some weird shit goes on at work.

Of course my usually quiet studio is bereft of visitors from one week to the next. I've learnt to leave the "recording in progress" light on at all times and generally I'm left alone....until a strange man is a sticking a syringe in my vein with a tourniquet round my arm and a thermometer in my mouth. Then of course it's open season. Colleagues are in and out like it's Piccadilly Circus. Oh? Are you busy? Shall I come back in a minute? Give us a call when you're done...Finally it quietens down enough for Dan to concentrate on the business at hand - or in the arm.

I've perfected the method of looking in another direction when blood is drawn kicking and screaming from me. It's not that I don't like the sight of blood. Just not the sight of mine leaving my body in a glass container. Which is why I didn't notice anything amiss until Dan says...sorry I've dropped blood all over your carpet and down your arm. Sorry? Sorry? Is sorry enough from a man who comes into your office and spills your blood across the floor? Still, thank god he's not taking the piss.

4' 33"

2009-05-24T12:19:00.009+01:00

My brother, who insists he is a unique Paul Carey and so won't be joining a collective of like named international artists, was surprised to hear I was feeling fine. Your blog sounds a bit, well, like you're ill quite frankly. Which I am of course...but just not all the time...and so here, for the benefit of all I shall refute and put perspective on all things ill. It's not that I make the blog up, but if nothing happens I don't report it. And there in lies the trouble...it seems like I'm only ever ill.

The problem when writing a blog of course is when nothing happens. If one is writing a blog about being ill and a whole week goes by without feeling ill then the blog gets a bit dull. It is of little interest for instance that on Monday I felt not even a twinge of MS. Of passing news-worthiness is that I forgot to do my injection on Monday evening. Of less interesting news is that EFN (who hasn't left for Southampton yet) said it didn't matter. Just do it Tuesday, Thursday and Saturday then go back to Monday, Wednesday and Friday. Where's the sensation in that? Things got worse on Tuesday when after a long and suspenseful wait I discovered I didn't have diabetes. Later I went to Birmingham where there was a fridge to keep the hamsters in. I remembered to inject. I didn't react. There was great excitment on Thursday when I crushed my finger whilst moving a mixing desk. It wasn't broken, but quite badly bruised...well it's gone a bit red.

My hands have stayed stubbornly pain free. There are no pliers attatched to my toes. The only song to drive my mind insane is James Brown's I feel Good. Unless you count Fridays hangover, which was entirely self inflicted by too much red wine at an evening reception featuring free red wine, I have to report that I felt and feel...well...not at all ill....A.O.K...Tip-top. I'm sorry. I look forward to boring you with more tales of feeling well next week.

Davy's on the road again

2009-05-15T12:30:00.011+01:00

I have to admit that touring isn't such a good idea. Touring brings on stress. Will the sound work? Will the audience turn up? Will I turn up? It turns out that stress brings on 'pseudo-exacerbations'. These aren't relapses. They absolutely feel like relapses but they aren't. They are 'pseudo-exacerbations'. Pseudo? Pretend? There is nothing pretend about this. It's seems bloody real enough to me. My legs still hurt, my hands still sting, the pliers are still attached to my toes and all I really want to do is sleep.

Then there are the practicalities. Backstage in a theatre is not the ideal place to inject hamsters into the system. Most theatres have a cat for a start. Then there's the dressing rooms - full of dancers. There's nothing like a musician slipping out the back with a syringe to raise a few eyebrows. I was going to try doing it in the lighting box but all the technicians wanted in on the action...yeah man..is it good shit? Well as oriental rodent ovary cells go it's top stuff. In the end I just casually pulled out the needle in the dressing room. No one even bloody noticed. I dropped my trousers, stuck the needle in my thigh, counted to ten, winced a couple of times. Nothing. Not even a casual remark from anyone. Bloody performers. Too into themselves.

Next week we're off to Birmingham. That means taking a weeks supply with me...and finding a fridge to keep the medicine cold...must ring the theatre...have you got a cat and a fridge?

All shook up

2009-05-01T22:18:00.013+01:00

Sometimes it feels like one illness leads to another and leads to more and more problems. MS? Of course Sir. and would you like diabetes with that? ...but...and whisper it quietly, mumble it discreetly - the week started well. Nothing to report. I was ok. No numbness. No irritating music in my head. No pliers attached to my feet.

Then out of nowhere last night was really bad. I did my injection as usual, went to bed, land of nod. Then about 1.30 I woke up. Hot. Burning. Tremors, shaking, pins and needles, uncontrollable. Fi began to worry. The plier man reappeared, this time with four friends and applied pressure simultaneously to all my toes. Involuntary shaking became so bad Fi wanted to cover me in day glow paint, stand me in the corner and call me "feature lighting". Have you had your paracetamol? She said. Paracetamol? I said. Are you joking? Paracetamol can't help me now! I need urgent care. No she said. You forgot to take paracetamol with your injection.. She was right. She normally is. A couple of paracetamol later (with ibuprofen thrown in for good measure) and everything calms down. I feel exhausted the next day but symptoms have disappeared.

I need to warn Florida Dave Carey about this though. Florida Dave is about to become the second Dave Carey to take Rebif Interferon beta 1a. I wouldn't mind betting we're the most popular name on Rebif's books...hey...we could get sponsored by them. Now this could work....MS vs Dave Carey (feat. Interferon Beta 1a). What's more I've found a New York Dave Carey that's a video maker. We could become an internet art collective. We could be called the Virtually Dave Carey Collective. VDcc for trendy short. No, hang on, sounds like we've all got Gonorrhea. That's an illness too far. We'll stick as a duet.

Music of my mind

2009-04-23T22:12:00.026+01:00

It turns out I couldn't handle the hamster after all. Just as I thought it was safe to go back in the water the big hamster came and bit me to pieces and triggered a relapse. It started during the night when my hands started to heat up...and up...and up...as though someone had put thermal gloves on me then dumped in the Sahara. Worse was to come - a Bruce Springsteen song got stuck in my head ...whoaa. whoaa, whoaa I'm on fire. Now I don't mind a bit of Bruce occasionally but stuck in my head for hours while my hands spontaneously combust is too much. Illness is bad enough - repetitious songs stuck in your head is far worse. Illness can be controlled with drugs. Songs in the head can't. And it's always the annoying ones. Kylie's nah, nah, nah. nah, nah, nah-nah, nah. Get out of my head will you.

The following day and my feet had joined in. MS had cunningly attached pliers to all my toes and pressure was being exerted to all of them individually in some sort of weird toe/pliers relay...all this to the accompaniment in my head of heads, shoulders, knees and toes. Of course the lyrics gradually morph to suit your needs. Heads , shoulders, my toes hurt (my toes hurt). Round and round and round. Heads,shoulders....Suddenly I'm missing Bruce.

That evening I hobbled round the kitchen trying to cook dinner ....until Fi could take it no more. Sit down will you. You're driving me mad. It was time for Bruce - Baby I was born to run....hopefully tomorrow.

Small world

2009-04-18T23:15:00.017+01:00

Well it's all gone pear shaped now. Everyones Favourite Nurse is leaving the trial. I've become a bit choosy about who stabs me with a needle and EFN is pretty much top, second, third and last on my list. I guess a mutual dependency exists between you and your nurse. I depend on her and she depends on a new job in Southampton...cos she lives there...what sort of excuse is that eh? She's fed up with four hours commuting a day. Where's the dedication?

Her parting gift to me is 3 months supply of hamster serum in its max strength - 44mgs. Heavy duty. Dr. G pops in to check I can handle it. Can you handle it...can you handle the hamster? Is not what he says at all. In fact he says I doubt you'll even notice the increase. Generally speaking if 8mgs doesn't do you in then nothing will. Nice. He's amused to hear that my twitching has stopped. Nothing to do with the hamster serum he says just co-incidental remission. That evening we're at a play in London and my hand starts to co-incidentally twitch as that familiar numbness starts to make its way down my arm. A healthy dose of beer in the pub after seems to numb everything else enough to make the arm feel at home. The following day and I'm back to full limb feeling. My mind is just playing tricks on me.

Back at work and a colleague introduces me to a scrawny fifteen year old kid who is joining the Youth Theatre...Dave Carey my colleague says...meet...Dave Carey, it's a small world isn't it...what are the chances of that eh? I look this kid in the eye...d'you wanna join a band?

Ten-a-penny

2009-04-12T19:47:00.030+01:00

Well I don't know about Britain but Dave Careys have definitely got talent. Turns out there's loads of us. Dave Careys are playing in bands in Pennsylvania, Boston and New Jersey - New Jersey Dave has even recovered from Leukemia which makes him leader of the band in my book. And...he plays the trombone! I'm a bit rusty but my trombone is still in the loft...I could get it out again...little bit of practice....Then it turns out that another Dave Carey had a #1 HIT in 1957...Bingo! Bingo!! I'm in love...Should this be our first release? A cover of Dave Carey's Bingo! Bingo! recorded by Dave Careys....it could start with a trombone duet. I need to check it out with Florida Dave first as he's been in the band from the start and really it's our band.

Meanwhile the diabetes jury is still out...the blood specimen was 'unable to be processed'. But what the hell does that mean? Unable to process because they've lost it? - because they accidentally heated it in the microwave with some tomato soup? Or did someone mix in half a pound of silver spoon granulated and I'm technically speaking dead but they haven't got the heart to tell me...but no...Don't worry they say, we'll take another sample when you're next here.

This means next week as I'm back for tests to see if my blood is ok for an increase in hamster serum injections (up to 44mgs). The injections are now leaving their familiar red marks at the injection site. On my stomach two red patches sit above my belly button like eyes and I'm definitely getting some odd looks a the gym, particularly in the sauna where the heat seems to exaggerate the red blotches. In fact if I position my hands correctly my whole stomach does a reasonable impression of Edvard Munch's 'the scream'. Good enough to go on Britain's got talent I think.

Twitcher

2009-04-05T22:27:00.011+01:00

Me and Dave Carey are making serious plans...mid west tour shaping up nicely...Madonna support slot unfortunately fell through...she only wants us if we can find a Dave Carey from Malawi...definitely worth a try though. Dave sent me a link to his web site http://www.dicksdog.com/ . I'm going to try and sample his guitar playing and muck about with it then send it back for him to add to. Canada guitar Dave is still playing hard to get and not responding to my twitters, guess he's holding out for big dollars...he's got to learn that this band is bigger than any one Dave Carey.

In the midst of all this it's easy to forget the MS bit...or rather it's nice to forget. I've now stepped up to 22 mgs of Beta Interferon Chinese Hamster Cells. I have to say that since the hamster injections started there has been no real difference to my MS hands and feet - they still feel like they are being slowly electrocuted....BUT....and this is quite an exciting BUT...the spasms that I had begun to feel quite self conscious about have all but disappeared. No more do I twitch in the middle of an important meeting...Once, a 'super twitch' that occurred during a show made my foot leap in the air and land on my sustain pedal leaving my keys temporarily blurred. Then I couldn't get my foot off the damn pedal for a whole verse and chorus. It only left when another spasm lifted the errant foot off the pedal long enough to clear the sustained row before landing back on the pedal and starting the whole process off again...but now the worst seems done...I haven't elbowed one of the kids involuntarily for ages...love it...we're off to France for a day trip tomorrow...I wonder if I can track down a French Dave Carey...maybe some accordian would give us a bit of a cajun edge.

What's in a name?

2009-04-01T21:40:00.018+01:00

Oh! The joy of social network sites. The fun of facebook, twitter et al for me is finding all those other people called Dave Carey...what do they do?...how well do they do it?....found a guy in Florida who combined our mutual name with a mutual career...what you don't expect is a mutual diagnosis...poor old Dave Carey...how many musicians called Dave Carey could possibly have relapsing remitting multiple sclerosis? Well, two it seems. We should start a band - we could call it MS vs Dave Carey...In fact I have now resolved to trawl the world for other potential band members of MS vs Dave Carey

If there aren't enough Dave Careys with MS I could widen the net to include other neurological illnesses...a drummer called Dave Carey with Parkinsons would be fine (if a little bit shakey)...I've found a guitarist called Dave Carey in Canada but there's no mention of illness...should I twitter him and ask if he's ill?... Hey! Should we include David Careys?

Let's imagine if MS vs Dave Carey could be a trio or even a quartet...the Guinness book of world records be interested....radio play for certain...a hit single guaranteed...we'd probably break up though, we'd get on each others nerves...what's left of them.

Metamorphosis

2009-03-30T22:30:00.003+01:00

Between tests and drips it's difficult to know how to fill this 21st century journal. It doesn't help that all I want to do is sleep. A week of Chinese hamster injections (interferon beta 1A) and I think I've gone into a kind of late winter hibernation. Sleep has never been so appealing. Thankfully I haven't had a sudden desire to consume lettuce and cereals and I have so far resisted temptation to buy a giant wheel so at this stage I think I'm not turning Kafka like into a hamster, but god I can sleep at the moment. Ella and Beth would of course be delighted at the prospect of a hamster in the house. It would finally give a purpose to the old toilet roll insides they've been hoarding since last year and ever since I explained that poor old Winnie the cat won't live forever they've been looking forward to a new pet....is Winnie still alive? is the slightly disappointed morning question. But they wouldn't behave like Kafka's family, hiding me away from the lodgers. Blimey, Ella would put me into her book bag and take me in for show and tell at school.

In general the girls are fascinated by the whole injection business - no squeamishness from them - they just park their chairs up for a good view of this latest alternative to childrens tv...God knows what they tell their teachers about Dad shooting up of a Monday night, I'm half expecting the social round tomorrow morning. Now that would be perfect for this weeks journal - My Dad's a junkie hamster.

Diatribetes

2009-03-26T15:23:00.001Z

It was a bizarre end to the week of steroids and hamsters. First off a letter arrived from the trial centre apologising that I had been unsuccessful in joining the trial and applications had now closed...this was news to Everyone's Favourite Nurse who was just sticking an IV into my right arm. In fact it was news to everyone but no surprise to me. Admin errors have dogged me throughout this year. If the NHS was the sum total of it's parts it would be the best organisation in the world. Every Prof, Dr, Consultant, Nurse, Manager, trial thingy person I've ever met has been first rate, caring, honest, professional and helpful. The caliber of our NHS staff is phenomenal. However, every attempt at administering between two or more hospitals has been a total and hopeless phenomenal disaster. Barnet did the wrong tests on my blood then lost my Neurologist referral, Enfield made a follow up appointment before I'd had the first appointment, lost a referral to the Royal Free then forgot to pass on my results to the trial centre at Royal London. This was made even more annoying by the permanently full mailbox on the end of the Neurology department phone. So the suggestion that I hadn't got on the trial three days after I'd started seemed about par for the course.

But after a week of drips and tests it didn't really seem to matter any more...no more needles for a month. I'm free. I'll just get my coat on. Oh, before you do could we just do a quick blood-glucose test...only your sugar levels are a bit high and we'll need to send a sample through to the lab for testing...has anyone in your family had diabetes?..I'll take my coat off then.

And a No. 47 to take away

2009-03-22T19:05:00.000Z

So I went to collect my consolation prize from the good folks at Clinical Research. The 2nd prize, Interferon Beta 1a, according to the leaflet I'm given to read - is licensed for the treatment of Multiple sclerosis...by DNA treatment of 'Chinese hamster ovary cells'...I'd like to meet the scientist that first thought - MS?, Chinese hamsters?..Eureka! Did they try Spanish hamsters first?...too laid back man....We'll deal with your MS tomorrow. But before I can get to this weird Chinese take-away smorgasbord I had to complete the usual corridor walking and mental arithmetic tasks. Then came the blood samples to keep the Americans busy....and finally onto the pre-injection main course - an hour of steroids by IV drip.

The steroids said the new Doctor from Sweden who I hadn't met before will make you very lively, you know, a little bit 'high' and fidgety. Now I'm not good at sitting still at the best of times but here they were pumping steroids through my system whilst expecting me to sit immobile with needles sticking out of my arm. Fortunately Everyone's Favorite Nurse kept me entertained with demonstrations of my new do-it-yourself injecting kit. Unscrew this bit, screw this into that bit, unclip that, put the syringe in that bit, check the marker, don't forget to remove the cap, pull out the lid, depress the top, place at a 90 degree angle, press the button, count to five...s...l...o...w...l...y, remove needle and hey! presto. By the time I'd done that wrong twice on an innocent looking plastic cushion the 60 minutes were almost up and I was feeling disappointingly not 'high'. I don't know what drugs she gets in Sweden but they must be pretty low grade.

And then to the big moment - my first injection. Just me, the needle, the contraption and the drugs with E F Nurse looking on like an examiner....I unscrewed, I connected, I pulled, I depressed, I pushed and phut...nothing. You've still got the cap on said EFN. Bollocks. I tried again unscrew, connect, twist, pull, press, push, bingo!! 26micrograms of Interferon Beta 1a coursing through my veins. 26micrograms of Chinese hamster ovary cells...Richard Gere eat your heart out.

Goodbye to Youth

2009-03-10T12:09:00.000Z

So they finally cut away the last vestiges of my youth. Jewelry is a big no-no in MRI scans....although they didn't seem so bothered at Chase Farm during my diagnosis MRI - if you feel the earring being wrenched out of your ear press the buzzer...An MRI scan is of course one huge great magnet. MRI's for a trial are obviously taken more seriously. I'd worn earring's since the first heady flush of late seventies rebellion. A pierced ear and a packet of ten number 6 were the sum total of my uprising. This particular earring had been welded into place at a proper piercing shop at the top of Edinburgh's Grass Market some many years ago and it now seemed impossible to remove. We need some cutters said the MRI attendant, come on we'll pop up to the plastering room, they'll have something. So up and down corridors, through wards of ill people, past the broken limbed all the way to the plastering room. Now you'd expect a request involving technical names for the cutters, or at least catalogue numbers but no...have you got those big cutter things in the shape of two cupped hands accompanied by an impression was the limit of this medical knowledge. What d'you want to cut? was the response and my earring was duly pointed out. Oh, you'll need these then and out came the untitled big cutter things in the shape of two cupped hands. Seconds later and my teenage rebellion that had stretched into the eighties, nineties and beyond had at last been laid to a respectable rest as two broken halves of a gold ring lay on the cutting room floor.

Back at the scan I settled down to an hours clunking. banging, whirring that is the state of the art MRI machine. First time I heard it it sounded like my long awaited collaboration with Brian Eno. But this time without my youth swinging from my ear it felt like a noisy row. Apres scan (is that a trend I could start?) at the trial centre is the now usual collection of weird tests. Then it's just the minor point of randomisation. Of course having succeeded in US blood tests and the French corridor walking championship it is inevitable that I fall at the final fence and end up on the existing drug Beta Interferon 1a as part of the study group. Hey ho, ho hum. At least I can't throw a teenage strop.

Bloody Cold War

2009-02-28T22:48:00.000Z

So while my blood laboured in LA the rest of me flew east to Moscow. I lived in and around NY for a while in the eighties but nothing beats the insane joy of Moscow. Last time I was there I met up with an old family friend, Dr. Nickolai. We met in the foyer of a old style soviet hotel. He's a big bear of a man, not unlike Breshnev to look at. In his younger days Dr. Nickolai was the countries foremost immunologist and he still has contacts in the business. As customary at such meeting we exchanged carrier bags containing gifts, the whole meeting resembling a cold war exchange of information. In fact we were exchanging information on MS and the best treatments as well as a few boxes of chocolates.

MS feels like a cold war of course. Lots of waiting, the constant threat of worse to come with sudden bursts of unexpected activity. As your nerve endings fray it seems that feet freeze in the heat and swelter in the cold which with harsh winters and cheap heating makes Russia perfect for confusing your extremities. As is customary in icy conditions I fell A over T on my way back from buying a cappuccino and had to helped to my feet by an old lady. My cappuccino was intact even if my self respect wasn't. BB was quick to point out that falling over with or without ice is something I've done for years and is nothing to do with MS

This visit culminated in the launch of the Moscow Chickenshed (Taganka Shed) at the British Embassy. Now that was cool. Well cold actually. Minus 12 outside and snowing as we arrived at the security gates. But if you are going to enter the British embassy in Moscow then quite frankly with snow falling and furtive glances is the only way. It demands to be John Le Carrier. Alas my cover was blown when our EU officer pointed out that nobody, but nobody wears their winter fur hat with ear flaps down...Russians are guilty of many fashion faux pars...but ear flaps down?...please...

With the wind taken from my sails and feeling more Brook than James the evening was saved by a bizarre interview for Russian TV (tell us and our viewers...what is you doing in Russia?) and of course great company in a great restaurant that served an even better Cranberry Vodka. That warmed us up.

It's enough to make you screen

2009-02-16T21:11:00.000Z

So screening is complete, well almost. I spent the day at the Clinical Trial Centre meeting the doctors and nurses who will oversee the trial should I qualify, and that still remains an if. I met with Dr. G who Fiona described as looking Irish, having an Italian name and was actually from South Africa. This whole trial thing is his idea. He is the professor behind the whole concept and is obviously quite bright. Anyway he was able to tell me I had the right type of MS for the right amount of time. So far so good.

Dr. M. was a completely different kettle of fish. He looked like Hugh Grant and sounded like that policeman with the terrible French accent off Allo Allo. He was responsible for assessing my fitness (can you wak for 'alf an 'our) and disability level (please wak across ze floor on your eels). He also had the terrible 'metal arithomatic' CD which required me to add up two numbers whilst listening to a third, which I then had to add to the last number in the sequence whilst listening to 'anzuzer nunzer'. Then he uttered the words that you really don't want to hear from a French Hugh Grant looky-likey of a Monday lunchtime...so, you and your, er, wife...are you er...still...er...active...you know what I'm saying...It's heads up as to whether this sounded better in an Inspector Clouseau voice or an Eric Idle nudge nudge manor but it was definitely a relief to change subject. The whole funfilled hour was topped off with a speed walk down the corridor, much healthier and much more fun...him with his stop watch, and me on my eels. I passed with flying colours which i think means I'm fit enough to be ill.

Finally was the nurse who took enough blood for several patients. We struck up conversation as she removed the blood...where do you live, what do you do...Chickenshed? My cousins go there. They're in the Youth Theatre.

So the final results are...well there aren't any yet, not until my blood gets flown half way round the world to be tested in LA (and no I can't go with my blood) but I do have a timetable of events at least.....

Provided my blood meets with American approval I will be randomised to begin 'infusion' on the 16th March