Call.

"This is for Simon. Call us, we have news about your blood test results."

Ah. This is the sort of call that makes me stop what I'm are doing, and prepare for what I know could be abysmal news. She seemed very keen that I phoned her back. Oh. Then the house phone started ringing. She is super been that I speak to her. Bugger. I pick up the phone.

"May I speak to Simon?"

"Yes…."

"Good news, your blood test came back negative, You're fine."

"Cheers, I figured this was the awful call I'd been waiting for.Thank you."

"Have a lovely day."

"I will, you too."

I have these calls every few months,  it always surprises me how deep a breath I was holding, before I got the news.

Outside of that everything is cool. I'm listening to The Avalanches and tip tappng away.

Infusion

Every month, for the past 33, I've pootled down to Gahanna, to have a potentially lethal, but very helpful drug mainlined into my blood. I started doing the drug, Tysabri, when it was pointed out that walking would not be an option for me if I didn't. I do like to walk, so I signed up.

The infusion cycle has worked out very well. I went from barely be able to walk at all, to pottering, if not charging about. I have my blood checked every couple if months, to check how dangerous it is for me to keep running the drug through my system. The last check I had said I was doing ok. I'm thinking about it today, as my blood got pulled yesterday for another check. 

The infusion itself is remarkably relaxing. I was initially terrified, but I now see it as a comfy chair, people who know what they are doing, putting the line in, and a time to chill out whilst listening to tunes. And coffee and sweets.

What does happen the day after the infusion, is that my blood has to settle. Yesterday I got home, ate a sandwich, then woke up at 4am. This morning was spent trying to distract my mind from the odd feeling the day after always gives me. I made the mistake of watching some death row documentary online. The attitude of the condemned is a little too familiar. Its not very helpful either. 

I think it is because MS has a certain, awful ending, that waits patiently,  until it decides its time. While it waits it comes after my health and physical movement, shutting things down when it gets bored.

The trick is not to let the plodding awful become everything that I think about, to not live in the debris strewn about by the ongoing battle. And not to judge, when it steals focus for a while.

This what its like the day after the infusion.

Tip Tap

I’m tip tapping away, having ignored the would as best I could, for a week. Actually I’ve been pulling back for a while now. At least I think I have. MS makes it difficult to tell.  I did drop my number one ranking on the local comedy chart, which I thought was fair enough. I can’t remember the last time I put anything up, or even looked at it.  The difficultly with MS is not knowing precisely why something is happening.  Why is David Icke on, having spent the last few days going through a myriad of online documentaries?Is it just so something is happening in the background? 

Hang on. Beth and I went to Mexico, which I really like. Going anywhere two years in a row, outside of going back to England, is unusual for me. What is really unusual is that I found so much more I liked about Mexico this time, having loved it the first time. 

Whats difficult is that I seem to have reached a point with MS where I’m not entirely sure what to do. I know I’ve been lucky, having not moved to primary progressive, with my dangerous monthly infusion still working out, and my odds of the awful remaining good I think its that it has gone on for a few years, and that my only my options are stop and do something else, because I know have to, or miss the warning, which has always been the risk.

Read what back, seems a bit whinny. Fuck it, I know what it is. There is a huge difference between bing told you have no way out, and knowing it for sure. Thats it, it made me stop for a while. If I stop, it then occurs to me, whats the point in that? Waiting for everything to pass, is not going to make any difference. It isn’t going any where.

I think Ive written like this before, doing what most with MS do,  not writing down the very worst bits, which all of us  tend to leave out. 

So, Mexico great, Game of Thrones great, documentaries online, a bit odd, but entertaining, and David Icke, hmm…