Monday 30 March 2020

old news

So. I got my PIP award. Actually, I got notification the day of my last infusion over two weeks ago. But the world has since gone to hell in a handcart and it just seemed too trite and small to bother writing about.

I got the same award as previously, but this time it's for 10 years. The guy from the Citizens Advice Bureau (who helped me to fill out my form) contacted me to see if I wanted to appeal - when we met he thought that I was entitled to the enhanced rate for both Everyday Living as well as Mobility.

I decided that I didn't want to risk losing the whole thing. Plus I knew by then that some serious shit was in the pipe as far as Coronavirus was concerned. For my own self care I figured that I'd have enough to fight without adding anything extra.

So the whole PIP thing seems like a problem from a more innocent time.

Last week was our first with Little Ms D since UK schools were closed. And although self-isolation is almost second nature to me (as it is for most people living with disabilities / chronic illnesses), it hasn't been without its difficulties.

And that's only bearing in mind logistics of child care, education and getting food (i.e. up until last Saturday, we couldn't). It's also been psychologically tricky to navigate. We're all in the same house, all of the time.

But I guess it's the same all over. And we have friends and family who're all struggling, and - strangely - this makes us all feel better.

However, this virus is bloody scary. Coupled with the fact that the government guidelines continue to change on a daily (sometimes hourly) basis. Also, nobody knows how Covid-19 interacts (or doesn't) with MS medication - things seem to point towards Tysabri being one of the least dangerous options (which is not to say that it's not without risks!) And I did get a call from the MS Nurses recently to double-check that I was coming for my next infusion. So time will tell.

But no matter. We have a new messiah.

Joe Wicks was someone that I'd only heard of in passing but now his P.E. With Joe daily workout is an essential part of our weekdays. Cometh the hour and all that.

Thursday 12 March 2020

social responsibility and hygiene

I started writing this post while sat in what should, by rights, be the safest space in the country. The infusion ward at my local hospital.

If basic hygiene isn't being followed in a room where people are receiving treatment for cancer and respiratory conditions, as well as MS, then we're all going to hell in a handcart.

There's no denying that it has been a weird couple of weeks. At present there doesn't seem to be much happening with Coronavirus in the U.K., apart from people washing their hands. I can't help feeling that a more complete shutdown is only around the corner [see last minute edit below].

I've had the dried and cracked hands of the excessive hand-washer ever since I started self-catheterising. Let's be honest, when you're putting a plastic tube up your junk, you definitely want to be sure that you've got clean hands.

If the only thing that comes out of the Coronavirus pandemic is that people finally get it into their heads that hygiene is for the general good... well, that might be a good thing. As Mrs D said earlier today, maybe people will start listening to actual experts. Imagine that!

I'm currently reading The Death of Truth by Michiko Kakutani. It's a couple of years old but one of its key points - that we're living in a time where every opinion or source of news is viewed as equally valid as the next - still holds true. It's like how racist politicians in the U.K. are regularly given a platform on mainstream TV and news to expound their toxic views because "that's just their opinion".

I'm only two chapters in but it's pretty striking how this sort of postmodern blanket validity, far from being some utopian libertarian ideal, actually plays into the hands of autocratic despots and fascists. Expert opinion can be simply ignored - see also climate change deniers, flat-earthers and anti-vaxxers.

Similar to the anti-vaxxers, I've heard some people saying that Coronavirus won't affect them because they're young with no underlying health conditions. I hope they learn before it's too late that these measures - vaccines, hand washing, self-isolation - only work if we all play along.

It's social responsibility. We all look out for each other. We all play our part.

[edit 12/03/2020 5.28pm] Despite saying that "More families, many more families, are going to lose loved ones before their time", the UK Prime Minister has just announced that he's going to do next to nothing. *slow hand clap*