26 February 2015

So, the day arrived. At last.  Today I moved onto phase two of the clinical trial. I had the infusion of tysabri, for sure. No more 50% chance of it maybe being placebo. How excited am I?  Not very, to be honest. Well, not skipping down the road excited (not that I can skip anymore). But it's a milestone. 

How do I feel?  Mildly nauseous. It could be that I was on placebo and now I'm getting tysabri I also have the gift of nausea.  Who knows?

One excellent thing was I had another MRI scan. I quite enjoy those - laying down in a tube. The biggest problem is staying awake. Last time I fell asleep and they had to redo a part cos I moved. I've a feeling I might have done the same this time. Well honestly, they put me on this comfy bed, cushion under my knees, offer me a blanket to keep me warm. The only extra I'd need to guarantee falling asleep would be if they read me a bedtime story.  But not on the NHS!

9 February 2015

Today I am going to try to be more focused.  I stopped writing because I didn't think there was any point, but there is!  This is more than my catharsis, it's a record of the crap that I face each day, some more crappy than others but still ....

I just watched 'Catfish: The TV Show' and realised how much of it is like my life. I've always been honest online, but phlegmatic about the likelihood of others being the same. Mostly it hasn't mattered because I've not invested that much of myself in online relationships. 

The one time I did was maybe the most dumbass I've been - and I still have powerful memories of sitting on a plane, on my way to the other side of the world, thinking "what on earth are you doing?"  In the event no harm was done.  I met the woman who became my best friend.  I met the most extraordinary girl (her daughter) who has become the daughter i never had. 

We both thought it might be something, both knowing that wasn't very likely and yet we are still in touch. We might not hear from one another for a few months but when we do it's like the conversation just paused. 

She knew me before my diagnosis and, like my family, doesn't give a toss. She paid for me to go out there for my 'nearly-daughter's' 18th. She hired a wheelchair to make sure we could get around as we had always done. 

I guess that's what makes her so special to me; like all the close people in my life, she knows how I have changed and doesn't give a toss. To her, I am just me. And that is very special.