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)

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.

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).

Legends.

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.

[SPOILER ALERT]

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

the social model of work

When I started writing this, it was a year to the day that I was chatting with Kathy from FUMS about the fact that she was looking for a new podcast editor. I asked what it might entail, she let me have a go, and the rest is (fairly-uninteresting) history.

However, what is fascinating to me is that at this point last year I didn't really know that a Podcast Editor was even a thing, let alone MY THING.

dignity through work

By the way I make no apologies for talking about work in the majority of my recent posts. I think that work CAN bring a feeling of worth and a sense of dignity.

Personally, when I had my MS diagnosis, I didn't really want to think of myself as being over the hill. And I was lucky enough to be able to work in predominantly full-time positions for over 10 years.

work culture has to change

I know only too well that some people don't have the choice of whether they work or not. But for those that do have a choice, I think that the world of work and employment has to change to accomodate what disabled people and those with chronic health conditions can do.

It goes back a long way to something I learnt a long time ago about the different models of disability. In brief:

The Medical or Individual Model of Disability suggests that the disabled person is the problem

Whereas...

The Social Model of Disability shows that the societal barriers are the problem

And to my mind this applies to the way in which people traditionally view work.

what a way to make a living

The thing is, I don't think traditional work (9 to 5, five days a week, office-based) is physically and/or mentally possible for me anymore. Especially because all my work history has been in the arts where 9 to 5 actually means, "37.5 hours a week, plus weekends, evenings and additional hours are expected, for which no overtime will be payable".

And that's even without the endless flipping meetings! I may even have to hand in my CULTURAL ELITE membership card. #sadface

As I've mentioned before,  this appears to be changing in the US, where some employers have "made [the] hiring of people with disabilities the next front in the effort to diversify workplaces".

Even when I was working freelance on the photography festival earlier this year, any remote working that I did was deemed to not be quite "proper".

Being able to work from home should be more accepted in this day and age, don'tcha think? Especially for those of us with bonus awesome health conditions.
 
Personally I think working from home allows me to get more done. FULL DISCLOSURE: sometimes I'm even in danger of working more hours than I should.

The big thing for the New Year is cracking being able to fit in some proper consistent exercise, to go along with making my first million.

No biggie!

the boy in the bubble

Earlier this week marked the third anniversary since I left my previous job. It's pretty mad that it has been so long!

After only a short time I felt that I wouldn't be returning to full-time traditional employment.
It hasn't been easy - as regular visitors to this blog will know. I had to spend quite a long time navigating the benefits system and applying for jobs, on top of applying for PIP (twice) and having the mother all relapses.

It has been pretty trying - to put it mildly. And not just for me but my wider family, especially Mrs & Little Ms D.

However I really do feel that I've turned a corner. I'm working a lot at present and I hope it'll continue!

---

 

Obviously there's a really important election taking place today. The last ten years of democracy have been hugely disappointing for me. The Conservative and Lib Dem coalition. A narrow general election win for the Tories. Ten years of austerity. Brexit. Trump.

This might be the most important one yet. For the future of the NHS in particular.

Previously I've been suckered in by what I have seen on social media. I am well aware of the fact that we live in our own echo chambers.

My feeds are filled with people who think the same as me, the same as your own. But I'm trying not to let myself be tricked again.

A friend of mine from university has worked as a corporate lawyer and is a successful businesswoman. She has been clear about her intentions for this election which has been incredibly heartening to see. Just because you are well off doesn't mean you have to stop thinking about other people. And left-of-centre values are not necessarily anti-wealth.

She has been trying to engage with the opinions of others and recently asked the Tory voters on her feed if they could explain to her why they would be voting that way this time. It was a noble idea but people questioned her intention to understand the other sides' motives and got pretty defensive. And people started on about benefit scroungers, magic money trees and the like.

So after biting my tongue for a while I done wrote a thing:

Soapbox alert. I've been following various parts of this thread with great interest and increasing respect for Suzanne in trying to raise the level of debate on this issue.

I'm not interested in niceties or understanding the other side's point of view. I'm a supporter of the policies and values which are aligned with the Labour Party. I'll be voting for them.

I'm a self employed person with a disability. Being disabled is not a lifestyle choice, it's expensive. I've got first hand experience of negotiating the labyrinthine Kafka-esque nightmare of the austerity-era benefit system.

Ever tried applying for PIP? It's demoralising and utterly depressing. Being questioned and doubted in my own home, and being turned down for this benefit after previously having a lifetime award for DLA (SPOILER ALERT: It's a chronic illness, I'm not getting better) almost drove me to suicide.

And I'm one of the lucky ones who has a support network and whose first language is English. People who vote for the Conservative party are effectively saying that they do not care about me or the security of my family, or for anyone else in a similar position.

It's inhuman to assume that Labour policies will encourage people to sponge off the state. And it's arrogant beyond belief.

I was not born disabled, I was diagnosed with MS at the age of 32. This could happen to any of us.

I have continued to work and pay into the system which benefits us all. There but for the grace of god and all that. Look outside your window sometime.

My preference is clear but I don't really care who you vote for. This version of democracy is the only one we've got and I stand by it.

And party allegiances aside, I hope that whoever gets in can do something to stop the UK being so utterly divided.

See you on the other side!

the blogger's conundrum: an ongoing series

Despite appearances to the contrary, I think about writing something here several times a day.

But... well.

See if you can pick the meat off this lot!

I had an MRI scan recently

But I got into the scanner bang on time for my appointment. And as I mentioned last time, it was almost entirely pleasant.

The only bummer was when I had to redo a section because my legs were spasming all over the place.

My last Tysabri infusion was a bit odd

For some reason I'd been booked onto the system on a day when hey didn't even do infusions. Dramarama.

Except not. Because they got me in and out even quicker than normal. Ok I had to sit in a normal hospital ward with some genuinely ill people.

But still. Hardly the stuff of misery memoirs, right?

I recently had a minor medical procedure

It was nerve-wracking but still. No more than 20 minutes of mild discomfort.

Undoubtedly an odd experience. But MS has given me a higher-than-normal tolerance for weird medical appointments.

Not the sort of content which will get me a book deal. Worst thing is, I've not been able to go swimming for two weeks.

Christ. That's it!

I've had some podcast meetings and enquiries. And it seems to be ticking along quite nicely. Could always do with more, so if you know anyone, get them to get in touch via The Podcasting Editor website.

My MS seems to be behaving itself mostly. Sleep can be hard to come by. And I've been waking up pretty stiff most mornings. But the lack of sleep won't be helping that will it? Or the lack of swimming.

If it's ok with you, I'll try to keep it this dull from now on.

that’s not MY MS...

Parents everywhere will know the "That's Not My..." series of books. If you don't have kids, the pages have different textures and readers go through a process  of elimination - that one's too bumpy, shiny or furry, etc. - until you discover the correct monkey, dinosaur or robot (for example). 

Wow, I sucked the joy out of those sweet little books, right?!

However I've been reminded of them recently.

A couple of years ago I read Jon Ronson's brilliant So You've Been Publicly Shamed. It's all about internet shamings, predominantly on Twitter, where someone speaks out of turn or makes a poorly thought-out joke and, because it doesn't fit in with the accepted view of a particular echo chamber, the other members pile on top of them.

Listen to an abridged version of the book read by Jon Ronson on the BBC.

I picked up on a tweet recently, by someone that I follow.

It seemed pretty innocuous and chimed with my own thinking, so much so that I shared it myself.

However, the original tweet didn't fit so easily with the accepted narrative of a small corner of the Twitter-sphere. Some users picked it apart and got pretty angry. I won't share grabs of their messages, for reasons that will become apparent (and I got permission from Mr S before I started writing this).

Some felt that he was being ableist and didn't understand MS (they could've found out that he has the condition himself). Some reacted as if he was saying that the way they were living with MS was somehow incorrect. Some felt he was basically saying that all the things they were living with weren't that big a deal.


One of the things people are told when they receive an MS diagnosis is that everyone's MS is different. Which is why some people call it a "snowflake" disease - not in the current Trump-presidency alt-right Brexit-era sense of the word.

My initial thinking was that the people responding to the original tweet were denying Mr S' own experiences of living with MS. Plus I've traditionally had a bit of an issue with people who seem to live entirely through the filter of their illness. Perpetually blogging and tweeting about it. Everything was fine before I was diagnosed, everything has been shit ever since, no one understands, no one cares.

My original plan with this blog was to write about how those people had forgotten about the unique nature of MS. About how everyone's "journey" (that bloody word again) was their own. And what did they think the newly-diagnosed would make of these perpetual micro misery-memoirs?

However, I now see that by writing that blog I would be denying them their own experience of living with MS.

Who am I to judge them?

Truth-be-told, my gut instinct is that I agree with Mr S' view. I still don't think it's particularly healthy for people to endlessly repeat the same narrative and have MS as the centre of their being.

But then, I don't think it's massively empowering to (by way of a not-at-all random example) ignore the reality of your increasing mobility issues. Which is exactly what I'm doing currently.

If all the tools of social media had been in existence and so ubiquitous when I was first diagnosed, I can guarantee I would've been using them in exactly the same way that some people do. For God's sake, even an old fart like me has been keeping this very blog going for over 10 years now!

There is a kind of reflexive-perma-moaning which (no matter how understandable) will likely continue to stick in my craw. But I don't have to read it. And if it works for you, more power to you.

It might just be that YOUR MS isn't MY MS.