The terrorist within

Why is it always a surprise? It shouldn't be really - it happens often enough. But its the same every time. For some reason after two or three weeks without any sign of the ms its just a complete outrage when it reappears. Of course you don't really think it's gone...but you can never really remember what it feels like to have that numbness creep down your arms until it creeps down your arms. At that point I tend to say...aahhhh there you are.

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.

Got to get up to get down

What is the correct etiquette for giving up your seat? We had a right old game of musical chairs on the Tube the other afternoon. The walk from Northern line to Central line at Bank is a ridiculously long one followed by loads of stairs up, and up and up by which time my legs were feeling decidedly shaky. I've been very healthy this week - I've been in Moscow so it's probably the vodka - but when my leg, especially my right leg goes numb it's a pain in the arse. Well...slightly lower to be more accurate. So it was a relief that I could find a seat on the Tube. Then some old lady with a walking stick gets on, so I feel obliged to get up. Next stop an even older man with stick gets on. Two people simultaneously get up for him leaving me with the chance to take one of the newly vacant seats. I get a slightly dirty look from the now standing youth that was being generous to the old man with stick but not to the middle aged man with shaky legs. What are the chances of this though...? At the next stop an even older lady but without a walking stick gets on. She stands staring at me...now...and here's the dilemma...is she old enough to get the seat? Do I have enough MS to keep the seat? Is my MS visible enough to let other passengers know I'm not being a selfish bastard. As the door starts to shut I can take it no longer...I get up...the old lady gets the seat.

Bloody Good Riddance

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? 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.

Wasted

It was accidental but I suffered a malfunction with a couple of injections last month. I loaded one of them inaccurately and it just went phut in its cylinder. The second time it went phut outside the cylinder but inside its cap. The resulting high pressure acted like a hydraulic pump and sent hamster ovaries flying across the room. This flying medicine landed in my daughters open mouth. Her mouth being open in shock because I was screaming "fuck, fuck, fucking hell." I'm hopeful that she has now been immunised against MS and that she doesn't repeat the phrase at school tomorrow.


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.

Cycle of life

Trial time. When the assessing doctor says how is your walking? I say fine. When he then says...can you walk for a half a mile? I say yes again. And that is where we leave it normally. It's a mutual trust thing... Can you walk half a mile? Yes. You don't expect him to say...prove it. Let's go. And so there we were walking down Whitechapel half way to Liverpool Street and back. I refused to answer the erectile function question.

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?

The percentage game

I'm six months into my trial comparing Rebif and Campath. Which for me means six months of Rebif. 78 injections. 78 Chinese hamster ovaries. Plus a combined total of 156 paracetamol and ibuprofen tablets. Should've got the Boots Advance card. I'd have enough points for a hot water bottle by now.

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.

In pieces

Well we finally bit the bullet and booked an impromptu week in a caravan somewhere in the midlands. It was very last minute. Fiona and I returned from our anniversary weekend in Edinburgh at about midday. Maybe its because I haven't been at home for most of August but we immediately got itchy feet... wouldn't it be great if we could just go away again said Fiona...and so while she popped over to the shop to buy a loaf of bread I logged on. By the time she got back we were booked to go. You know that was a flippant and rhetorically wishful statement that didn't require credit card use she said..Too late...an hour later we were on the M1 heading up country to a caravan park.

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.