Pear Shaped

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

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

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

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

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

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

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.