I've not been a good blogger recently. In fact, I've been very bad.
I have often thought of things to say then forgotten to write them down.
Ideas come and go in the blink of an eyelid or snag of Jemima on a pesky kerb.
I have been very busy - this is not an excuse, a boast or a plea for help. Or perhaps it is all three. I have lost count of how many miles I have driven since my last blog post but I've been to
London, Leeds, Oxford, London, Oxford, Nottingham, Oxford, London, Oxford.... yes, I live in ! Oxford
Somewhere along the way I have been involved in radio interviews on behalf of the MS Society
about the not 100% nice NICE decision on Gilenya. It's nice for me that they have agreed to prescribe the Wonder Drug but there are criteria to be met and I don't know if I will fall through a loophole. I am hoping not as I have been taking it for a year and have no intention of ever self-injecting again. That would not be nice. UK
I would rather not be on any DMD than go through the half hour hell of injecting three times a week. Apologies if Copaxone, Rebif etc etc work for you. I think my tummy has only recently recovered from the Rebif injection site side effects and I stopped using it a year ago!
So NICE have made their decision. As arranged by the press office of the MS Society, I recorded an interview for local radio (from my mobile phone outside a jolly*
pub**) saying what it means to me and how the Wonder Drug has changed my life, which it has. I can come and go without thinking about autoinjector, needles, freezer for cool bag, let alone the time it took to actually do the injection. London
Some MSers may not take any meds but I do and my morning cocktail is easily supplemented by an additional capsule of Gilenya.
My second interview was for BBCRadio5 Live. That one I did live from a local radio station. Bizarrely, a friend heard it and emailed me:
"Put my car radio on as I set off about mind ago (sic) .Heard a distinctive voice and thought that's our [Toots]. Missed the beginning of your interview, but caught most of it. You argued your case coherently and eloquently. Thought you would like to know"
Another friend has donated to (one of) my fundraising ventures. His comment is: "You are SO the female John Noakes. All power to you." - how lovely of therm both. (If you don't know who John Noakes is you probably didn't watch Blue Peter on BBC1 in the same era as me)
All the comments and affirmations are truly heart warming and as I carry my mantle of campaigner, fundraiser and idiot - whoops, daredevil - I am glad to be appreciated.
I have posted pictures to the MS Trust I also have MS project
I am forging ahead and if you want to sit in despair then please don't bother me - I'm too busy!
** Urban Bar in Tower Hamlets