no flies on me

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

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

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

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.