Sunday, 20 December 2009
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.
Tuesday, 15 December 2009
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.
Sunday, 6 December 2009
There we go...I'll be smiling tomorrow. Which is different from I'll be milling tomorrow.
Sunday, 29 November 2009
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.
Sunday, 15 November 2009
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.
Sunday, 8 November 2009
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?
Thursday, 29 October 2009
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.
Thursday, 22 October 2009
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.
Friday, 16 October 2009
Saturday, 10 October 2009
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 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.
Monday, 28 September 2009
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.
Friday, 25 September 2009
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?
Friday, 11 September 2009
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.
Friday, 4 September 2009
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.
Tuesday, 25 August 2009
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.
Tuesday, 18 August 2009
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.
Wednesday, 5 August 2009
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.
Saturday, 1 August 2009
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.
Sunday, 26 July 2009
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).
Saturday, 18 July 2009
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.
Monday, 13 July 2009
'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.
Thursday, 2 July 2009
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.
Friday, 26 June 2009
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
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
Thursday, 18 June 2009
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
Saturday, 13 June 2009
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.
Saturday, 6 June 2009
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.
Friday, 29 May 2009
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.
Sunday, 24 May 2009
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.
Friday, 15 May 2009
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?
Friday, 1 May 2009
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.
Thursday, 23 April 2009
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.
Saturday, 18 April 2009
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?
Sunday, 12 April 2009
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.
Sunday, 5 April 2009
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.
Wednesday, 1 April 2009
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.
Monday, 30 March 2009
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.
Thursday, 26 March 2009
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.
Sunday, 22 March 2009
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.
Tuesday, 10 March 2009
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.
Saturday, 28 February 2009
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.
Monday, 16 February 2009
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