Rock n Roll Saved my life

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 Birmingham on July 13^th in aid of the MS society, 600 drummers will beat their drums simultaneously and create a record for the most drummers ever to play together . Birmingham Royal hospital will then treat 600 deaf drummers simultaneously and create another record. If you’d like to make my mate deaf please donate generously. Dollars, Pounds, Euros…all welcome.

www.justgiving.com/simoncooperonline

Lessons

As my friend B. would say…that’ll learn ya…(she’s got northern roots)…and it did. All last weeks talk of feeling better than I had in years lasted until Tuesday. The ends of my fingers went numb about four o’clock in the afternoon. I had the kids with me, we were going swimming. Quite abruptly the numbness rolled out up my arms and down the legs, ending in the pliers relay on my toes. Swimming was off the menu.

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.

Rude boys

Talk about rude health. I'm probably feeling better than I have for years. I'm firmly into remission with little sign of MS. The hamsters have settled down nicely. I'm 7 months without any baccy, wacky or not. I haven't got diabetes. A raised cholesterol level in a recent blood test has sent me running to the soya milk and benecol department. I've given up cheese (which is more difficult than anything I've done thus far for my health). I'm a slave to five a day and oily fish. The receptionist at the gym even recognises me.

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.

Odd jobs

Dan, who is my phlebotomist (yeah, my own phlebotomist, enough kudos...) came to see me at work earlier in the week to take my blood samples, my blood pressure, my temperature...to take everything basically....This is obviously not a run of the mill occurrence at work, and believe me some weird shit goes on at work.

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.

4' 33"

My brother, who insists he is a unique Paul Carey and so won't be joining a collective of like named international artists, was surprised to hear I was feeling fine. Your blog sounds a bit, well, like you're ill quite frankly. Which I am of course...but just not all the time...and so here, for the benefit of all I shall refute and put perspective on all things ill. It's not that I make the blog up, but if nothing happens I don't report it. And there in lies the trouble...it seems like I'm only ever ill.

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.

Davy's on the road again

I have to admit that touring isn't such a good idea. Touring brings on stress. Will the sound work? Will the audience turn up? Will I turn up? It turns out that stress brings on 'pseudo-exacerbations'. These aren't relapses. They absolutely feel like relapses but they aren't. They are 'pseudo-exacerbations'. Pseudo? Pretend? There is nothing pretend about this. It's seems bloody real enough to me. My legs still hurt, my hands still sting, the pliers are still attached to my toes and all I really want to do is sleep.

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?

All shook up

Sometimes it feels like one illness leads to another and leads to more and more problems. MS? Of course Sir. and would you like diabetes with that? ...but...and whisper it quietly, mumble it discreetly - the week started well. Nothing to report. I was ok. No numbness. No irritating music in my head. No pliers attached to my feet.

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.