Music of my mind

It turns out I couldn't handle the hamster after all. Just as I thought it was safe to go back in the water the big hamster came and bit me to pieces and triggered a relapse. It started during the night when my hands started to heat up...and up...and up...as though someone had put thermal gloves on me then dumped in the Sahara. Worse was to come - a Bruce Springsteen song got stuck in my head ...whoaa. whoaa, whoaa I'm on fire. Now I don't mind a bit of Bruce occasionally but stuck in my head for hours while my hands spontaneously combust is too much. Illness is bad enough - repetitious songs stuck in your head is far worse. Illness can be controlled with drugs. Songs in the head can't. And it's always the annoying ones. Kylie's nah, nah, nah. nah, nah, nah-nah, nah. Get out of my head will you.


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.

Small world

Well it's all gone pear shaped now. Everyones Favourite Nurse is leaving the trial. I've become a bit choosy about who stabs me with a needle and EFN is pretty much top, second, third and last on my list. I guess a mutual dependency exists between you and your nurse. I depend on her and she depends on a new job in Southampton...cos she lives there...what sort of excuse is that eh? She's fed up with four hours commuting a day. Where's the dedication?

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?

Ten-a-penny

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.

Twitcher

Me and Dave Carey are making serious plans...mid west tour shaping up nicely...Madonna support slot unfortunately fell through...she only wants us if we can find a Dave Carey from Malawi...definitely worth a try though. Dave sent me a link to his web site http://www.dicksdog.com/ . I'm going to try and sample his guitar playing and muck about with it then send it back for him to add to. Canada guitar Dave is still playing hard to get and not responding to my twitters, guess he's holding out for big dollars...he's got to learn that this band is bigger than any one Dave Carey.

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.

What's in a name?

Oh! The joy of social network sites. The fun of facebook, twitter et al for me is finding all those other people called Dave Carey...what do they do?...how well do they do it?....found a guy in Florida who combined our mutual name with a mutual career...what you don't expect is a mutual diagnosis...poor old Dave Carey...how many musicians called Dave Carey could possibly have relapsing remitting multiple sclerosis? Well, two it seems. We should start a band - we could call it MS vs Dave Carey...In fact I have now resolved to trawl the world for other potential band members of MS vs Dave Carey

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.

Metamorphosis

Between tests and drips it's difficult to know how to fill this 21st century journal. It doesn't help that all I want to do is sleep. A week of Chinese hamster injections (interferon beta 1A) and I think I've gone into a kind of late winter hibernation. Sleep has never been so appealing. Thankfully I haven't had a sudden desire to consume lettuce and cereals and I have so far resisted temptation to buy a giant wheel so at this stage I think I'm not turning Kafka like into a hamster, but god I can sleep at the moment. Ella and Beth would of course be delighted at the prospect of a hamster in the house. It would finally give a purpose to the old toilet roll insides they've been hoarding since last year and ever since I explained that poor old Winnie the cat won't live forever they've been looking forward to a new pet....is Winnie still alive? is the slightly disappointed morning question. But they wouldn't behave like Kafka's family, hiding me away from the lodgers. Blimey, Ella would put me into her book bag and take me in for show and tell at school.

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.

Diatribetes

It was a bizarre end to the week of steroids and hamsters. First off a letter arrived from the trial centre apologising that I had been unsuccessful in joining the trial and applications had now closed...this was news to Everyone's Favourite Nurse who was just sticking an IV into my right arm. In fact it was news to everyone but no surprise to me. Admin errors have dogged me throughout this year. If the NHS was the sum total of it's parts it would be the best organisation in the world. Every Prof, Dr, Consultant, Nurse, Manager, trial thingy person I've ever met has been first rate, caring, honest, professional and helpful. The caliber of our NHS staff is phenomenal. However, every attempt at administering between two or more hospitals has been a total and hopeless phenomenal disaster. Barnet did the wrong tests on my blood then lost my Neurologist referral, Enfield made a follow up appointment before I'd had the first appointment, lost a referral to the Royal Free then forgot to pass on my results to the trial centre at Royal London. This was made even more annoying by the permanently full mailbox on the end of the Neurology department phone. So the suggestion that I hadn't got on the trial three days after I'd started seemed about par for the course.

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.