die-caffeinated

It's been a long week
.... down to Whitechappel for the quarterly neuroteaser checks...Made a good start -  only got two questions wrong in the maths marathon addition competition. Put in a good showing in the short corridor sprint, but nowhere near my personal best and the 1/2K walk to Commercial Street has been replaced by an indoor version - the walking machine - not as pleasant but that's scientific progress for you. Leg tickling and pushing me over when my eyes are shut and I'm standing on one leg all went according to plan. I do love it at clinical research. It's like a surreal day out in a 60's Doctor About The House film. NeuroBond thinks my lax right leg is not a sign of exacerbations but a continuation of March's relapse which is comforting (I'm not imagining it) and annoying (6 months is surely enough lapsing). The rest of my time is spent waiting for Moneypenny to extract enough blood to satisfy the American pharmacutical company's vampirical lust.

Sitting and waiting is the perfect time to log on (it's a Wifi hospital) and catch up on e-mails. There's one from the blog marketing company who aren't making it easy for me to earn the full meal and west end show experience. The last two "job opportunities" have been for funeral services and a coffee shop in Vancouver. Even with my lateral sense of thinking and even after a bottle of red wine I can't make my blog meander through the subjects of death and coffee drinking in Canada (they also offer a selection of panini's and wraps if you're in the area) whilst living in London. But, with $12 at stake....

"I'm dying for a coffee....thought I'd try this new place in Vancouver...6,000 mile round trip taking three days but boy the coffee was worth it...on the downside all that coffee, travel and jetlag has given me hypertension...a great incentive to plan for my funeral...."

bum

My poor old legs have had enough of injections. They've got the needle. Or more acurately too much needle. Injection fatigue. They've had enough of feeling a prick. Two red blotches have grown wider and redder. My hither too manly hairy thighs have gradually taken on the look of a well waxed male model. Only it's not the look for a middled aged balding man with a beer belly...and certainly not just one large bald circle on either thigh. The bald circles, alas, mirror my head - where I've never injected incedently - and now I'm beginning to feel a percecution that entails every limb collecting a bald patch. Three down, two to go...is the head a limb? Anyway, Neurobond, who was on particularly good form at our recent Neuroteaser session says I should try my bum....actually he said buttock, but bum feels less scientific...so I'm no longer a leg man. Me? I'm a bum man.

up on the roof

Such is the popularity and quality of this blog that I was contacted by a digital marketing company who offered me money to write the blog. It was all very simple and went something like this....They would match companies seeking blogs on their subject matter to my blog. So if Asda were hoping to increase interest in their new range of health insurance this comapny would let me know, I would include discussion of health insurance in my next posting, mention that Asda were great, Asda would pay the company and the company would pay me. Mine being a health blog meant I would be matched to companies interested in health issues. Easy. How much was the big question? How much? $6 a post was the life changing answer. But hell - despite the disingenuous nature of covertly using my real life blog to advertise products for my own financial reward - 52 posts a year at $6 a post would pay for a romantic meal and a West End show for me and the wife. Happy days.


The difficulty of having MS, I find is when you want to use interlocking roofing tiles. I guess it’s the numbess in my fingers that mean my choice of interlocking roofing tiles is a new company called Avernex. It’s reassuring to know that when I’m replacing the roof I can easily interlock the roof tiles and get off the roof quickly before I suffer a relapse or a dizzy spell. So if you’re suffering a long term illness and thinking of replacing your roof I suggest you consider interlocking roofing tiles. They really do interlock and go on the roof.

That’s a prawn cocktail in the bag.

no flies on me

The advantages of having MS just seem to expand all the time. Once again the hot Mediterranean country of Spain has shown the way forward. Not this time the joys of walking unhindered down red hot asphalt paths without feeling the burning sensation in my feet. (see post 18/08/2009) This was far more practical and handy. Flies. Yes, flies. It happened when we went to visit friends in Marbella. We took the coast road down from our regular haunt of Nerja down to the luxury resort arriving in time for a splendid bar-b-q and a large, thirst quenching cocktail. Bliss. "If it wasn't for those pesky flies" said everyone as they swatted the damn things every time they landed. Everyone except me. What flies? "The two walking up your right leg for a start". Sorry, my right legs an authentic registered spastic and does not recognise, feel or notice insects alighting on it. So there we have it. Spain is where MS sufferers should move to and enjoy the freedom of walking bare foot on hot roads and the pleasure of bar-b-q's without the annoyance of flies bothering you.

Still singing

Well shout it from the roof tops or whisper it quietly  - I feel good and have been for several days...this weird disease has dissappeared for a while...and while the cats away the hamster has fun...but should I  be shouting or whispering?....shouting feels like it will invite a problem...I always worry about this...you see, down at Tottenham, when we take the lead against another  team we start singing very loudly....”you’re not singing, you’re not singing, you’re not singing anymore” followed by “you’re shit , and you know you are”. Now I know that at some point later that afternoon 5000 away fans are going to enjoy rubbing our faces in that...so is it better to stay schtum and avoid the humiliation of reverse baracking or enjoy your moment in the sun?....Well in this case I’m reasonably sure that no one is going to revel in screaming “MS is back, and you know it is”....So whisper it loudly is today’s maxim....”I’m ok and you know I am”

Spaz and Edss

There is something in the MS trial world called “expanded disability status scale”. Edss for short (as though you have a lisp and a friend called Ed). In the world of EDSS a zero is absolutely fine, A OK, top of the world. The scale gets progressively worse until ten . You don’t wanna be a ten. Ten is dead. When the missing blinded assesor reappeared after his absence we set about testing my EDSS. We walked on the walking machine, we stabbed sharp and blunt instruments into my limbs and we generally scraped soles and banged knees with hammers, tuning forks and the like until he had a score.

Now, growing up in the 70’s, a world away from the political correctness of now we had an all purpose insult in the playground....spas, spaccy, spazoid, spastic. It covered all the ground from “Hey, spas pass the ball” to “Spaccy, give us a lug on your fag” and of course “Carey is a total spastic”. Now I know that’s deeply unkind but it didn’t seem so to 13 year old boys in 1977. A spastic was just a plastic boy with a gammy leg outside a charity shop. Besides, you couldn’t catch spastic, you couldn’t become a spastic. Now I know different. Blinded assesor tells me i have “significant spacicity” in my right leg. Are you telling me my right leg is spastic? Well he tells me I’m going to have to put you down as a one. So there we have it. I’ve still got nine lives left and Carey may not be a total spastic. But his right leg’s giving it a good go.

Pear Shaped

The highly efficient service that has characterised life in Clinical Research came spectacularly off the rails today. My 15 month appointment was set for 8am (that is apparently a legitimate time in the morning). To be at Clinical Research for 8am means leaving North London at 7am which requires getting up at 6am (in my books that is not a legitimate time. It's a bastard of a time). Then it turns out that the blinded assessing doctor who is due to make me hop, skip and jump before enquiring about my sex life is stuck in Colchester. Colchester is a Roman town. It's a straight road to London and he's very fond of making me prove I can walk in a straight line. But not today he isn't. Everyone is suitably embarrassed. NeuroBond can save the day. He is my unblinded doctor for the day. Due at 9am. Then it turns out NeuroBond 'doesn't like mornings'. So he'll be late. An hour late. What's going on? No blinded doctors, no sighted doctors. Even Moneypenny is missing. New nurse is offering me coffees and teas (probably an attempt to get me to wee in the sample jar). But it won't wear with me. She takes my blood, and eventually the piss before checking my blood pressure. It is apparently 'quite high'. Deep breath. Calm.