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.

Ashes to Ashes

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

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

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

Malawi

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.