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!