My (insensitive) Left Foot

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

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

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

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

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

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

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.