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 coning 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*

Friday, 7 February 2020

i don't write to waste my time

As a long-time friend of the blog and Person I've Actually Met In Real Life, SwissLet recently invited me to take part on his site. He sporadically logs his earworms and he wondered if I'd like to have a go.

Really? Asking me to blather on about music? The very idea...

So obviously I did it. And I probably went a little bit overboard, meticulously logging the songs which genuinely appeared unbidden on my internal iPod first thing in the morning all week.

If you need some of that in your brain pan, please visit his blog here. My playlist features D'Angelo, Harry Nilsson, Super Furry Animals, Stereolab, Bonny Light Horseman, The Pointer Sisters and - OF COURSE - Killdozer.

Obviously, I LOVED doing this. So much so that I may do it again (whether he wants me to or not).

Friday, 31 January 2020


And my PIP form is in! After a couple of weeks of pretty intense activity. To be honest it went in the post last week. But y'know. REAL LIFE.

In the first instance we relied on the same sources as previously - the Benefit Advice Essentials Facebook group and our contact from our local Unemployed Workers Centre. All signs seemed to point towards approaching the form as if it was an entirely new application.

Yes, I've gone through the application process before. And yes I can do it again. But it's no one's idea of a good time, especially when you have to fit it in with your workload, hospital appointments, etc. And the thought of the amount of time it would take was beginning to stress me out.

Now several months ago I had to fill in a Work Capability Assessment form for Universal Credit. Around this time, I was chatting to a young woman in the infusion ward about the many hoops that we had to jump through to get the support we were entitled to. She mentioned that there was someone based at the Nottingham Citizens Advice Bureau whose time was paid for (at least part of the week) by the MS Society.

I never contacted him at the time and it turned out that I got the result I needed off my own back.

But for some reason I never deleted his contact details from my phone. So I arranged to go in and see him to talk about my PIP application.

Although I was outside of his geographical area, he said that he could use his own judgment. And the MS Society would prefer him to use his time to support people with MS wherever possible.

He also said that I should bring my form with the evidence I'd gathered so we could fill it in together.

In our meeting he talked for the first hour about everything from council tax reductions to Universal Credit to aids and adaptations, before we even got onto the subject of PIP.

Same as we did for my last application, he approached the form by looking towards a tribunal, getting it as watertight as possible at this early stage.

I should say that he has had a lot of experience filling in (and appealing) PIP applications. He even said that he was involved with the design of the PIP form. The thing about the reapplication form, the boxes are pretty small. So this guy basically scored through the questions that I wouldn't be answering and used the available space to get as much information down as possible.

I mean, who would even think to do that if they were filling in the form on their own?!

He also advised against the prevailing wisdom that this form should be filled in as if you're writing about your worst days. His argument was that, if you fill a form in saying that [for example] you can't get out of bed due to back pain, and then you turn up a tribunal, it immediately puts the rest of your form under scrutiny.

As well as all of this, he said that the fact I was in a relapse during my first assessment (and I then referenced it in my second application) probably wasn't as helpful as we first assumed. The assessor would judge it on a 3 months back, 8 months forwards basis. By that logic they can assume that I'll make a complete recovery and make a judgement accordingly. Interesting!

After going through all the sections and double checking that I was happy with what he'd written, he said that I could take the form home to send it when I got the last bit of evidence I was waiting for. Or he could send it for me as it stood, with additional evidence (a letter from my neuro) to follow.

Obviously I bit his hand off! And the relief was unbelievable.

So now we wait. Again.

Good luck as always to anybody else going through similar trials and tribulations.

Friday, 24 January 2020

four weeks good, six weeks... just as good?

At my recent MS MOT, my neurologist was pleased. No new disease activity, no new symptoms.

His big issue recently has been that I’ve been on Tysabri for over two years. And in all that time I’ve been JC Virus positive.
The JC virus is a common infection completely unrelated to MS. Between 40-90% of the general population have been exposed to JC virus. You are unlikely to know if you have been infected, as JC virus causes no symptoms, and is normally kept under control by the immune system.
However, if your immune system is weakened, the JC virus can reactivate. It can then cause serious and potentially fatal inflammation [my emphasis] and damage to the brain known as progressive multifocal leukoencephalopathy (PML).
- from the MS Trust website
And he told me that, being positive for the JC Virus,  if I was in the market for a new Disease Modifying Therapy now,  he would not be suggesting Tysabri at all.

But I’m tolerating it and doing well on it so we’re going to keep things as they are.

Apart from...

There is apparently a large amount of research which says that Tysabri is just as effective when it’s taken on a 6 or 8 week cycle. So after my next infusion I’m going to try going to 6 weeks.

This scares me a little. I’ve mentioned before that I feel "ready for" my infusion by the time it rolls around every 4 weeks. I’ve mentioned this to my neurologist before and he effectively told me it was all in my head. (To which I almost said, “You’d better tell all the other people in the infusion ward, mate”)

But I do trust him. So let’s see.

He’s writing to my GP to let him know and also to recommend another round of Cognitive behavioural therapy (CBT) .

One thing which was interesting was when, during the conversation, I said that Intermittent Self Catheterisation changed my life.

He looked a little crestfallen, like "I feel bad for you but it's one of those things"

I immediately said, "Oh no, I mean it's changed it in a good way".

Because it really has. Once the logistics are taken care of I can actually leave the house on-or-thereabouts the time that I need to.

He was also a little put out when I said that he often gets the best-case version of my condition, whereas the MS Nurses tend to get the uncut no-holds-barred version (lucky them).

My logic for this is, the Nurses are there to support and empathise, and to make recommendations for my treatment. Whereas he has the power to upgrade my MS from the more benign (HA!) Relapsing and Remitting variety to the (80% of all PwMS) Secondary Progressive MS.

So forgive me if I sprinkle a little sugar on top for you!

I like to think I'm not alone in this. Or maybe I'm just being an idiot?

(not entirely beyond the realms of possibility)

Wednesday, 22 January 2020

at the third PIP...

So less than two years after I got my PIP award I'm having to reapply. The DWP takes the day from when I first applied, not from the day they finally gave me my award (after faffing around for 18months).

Yes, we all know that MS is a chronic, progressive condition and that it's a cold and cruel world.

"It's not as if you're going to get better" etc.

But this is apparently where we are. So let's go to work.

And yes, the form does ask if there've been any changes to my condition. As such, you might be forgiven for thinking that if I just said "No" then I'd get get the same result straight off the bat.

But everything I've read says that it ain't necessarily so. So I need to treat the whole thing as a fresh application.

I've got numerous appointments lined up in order to get my supporting material sorted in advance.

I've already met with the contact we worked with last time. And my neurologist. Still to come: a contact at the Citizens Advice Bureau (who one day a week has his time paid for by the MS Society) and my GP.

Even with all of that I'm not kidding myself that this will be an open and shut case. Or easy. I'm not a complete amnesiac!

But all we can do is keep buggering on. So that's what we're doing.

Fingers crossed.

Friday, 10 January 2020

2019 gratitude list

A recent Calm meditation session I did talked about practicing gratitude as an aid to better mental and physical health. In for a penny and all that.

These are the things I'm grateful for - NB I started writing this before the end of last year but REAL LIFE.

1. The two women I live with

Mrs D and Little Ms D. The very best people.

Not only is everything I do impossible without them, but there would really be no point.

2. Family

We have the most amazing family around us. They support and care and do a lot of the heavy lifting.

I like to think they get something out of it too, something back from us. But we know how lucky we are.

3. Friends

I'm also grateful for the amazing friends we have, not just for me but Mrs and Little Ms D too. In a way which I never saw coming we seem to have got a three for the price of one deal, in that the core group is shared on each level between us.

I've been particularly lucky that my friends have been in my circle since my good old days playing music.

We get together regularly, talk shit about music, drink. It sounds wonderfully ordinary but again I know how lucky I am.

In 2019 they pushed me around to gigs, got angry on my behalf when venues were inaccessible (Bodega Nottingham, I'm looking at you), and have even picked me up to drive me to the pub when the weather was particularly crappy (then taking the car back home before walking back to the pub).


4. Interventionists

I'm not going to bang on about my Podcast Editing business *ahem*. But in June of last year I had a Zoom conference with Kathy from FUMS and Jackie Z (Queen of GSD).

Kathy I met at HUConnexion in Philadelphia in 2018. I just happened to arrive late enough that the only space left was next to her! Isn't it crazy how things work out?

Jackie has been a virtual presence in my life since... well, I genuinely don't know. I do know that her old MS blog (sadly defunct) changed the way I felt about my diagnosis. To say it saved my life seems a bit too dramatic. But it's somewhere along that line. We've been chatting online ever since, through good and bad times. And the Zoom call was the first time we'd ever spoken.

I've been describing that call as a "career intervention" ever since. Two forceful Yanks telling me that podcast editing might be the career direction I didn't know I was looking for.

By the end of our chat I had a web address and a set of tasks to carry out. Within a few days I had a logo and a website, designed, built and hosted by Jackie.

Ever since then they've been promoting me and sending clients my way. To say that I'm grateful for these two amazing women is one of the understatements of the millennium.

5. Readers

No one comments on blogs anymore. But I know that there are some people out there reading this stuff. And not just this post I wrote about the accessibility of Center Parcs way back when (still the most visited page on here).

Towards the end of last year IASB was even picked as one of The Top 10 MS Blogs to Follow in 2020 by Everyday Health website.

I know it's stuff really doesn't matter but it was really nice to receive this. Especially because they'd obviously gone fairly deep with their chosen episodes. Thanks.


So these are the things which I still feel grateful for. And I do feel better when I acknowledge them.


I have a horrible feeling that I'm going to need them this year!