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.