another pseudo relapse

Yes, some actual MS-related content!

I think that the pseudo relapse might be one of the cruellest tricks that MS can play on us. A mini exacerbation of all your favourite MS symptoms that lasts for 24 hours.

But what a 24 hours!

There are a lot of colds going 'round at the moment and obviously, I'm not immune. A sleepless night due to coughing and spluttering meant that the following night I woke up feeling like I had locked-in syndrome. Just totally unable to move anything - terrifying.

The following day I was basically immobile. Luckily I'd completed my work for the year but it was scary. Like, I knew it was probably a 24-hour thing, but I didn't know it was a 24-hour thing.

And that's what's so difficult - you find yourself hoping it isn't a full-blown relapse but you know damn well there's nothing you can do to prevent it either way. 

Actually, I think the worst thing might be that we put those closest to us through all of this as well.

Because today I woke up feeling a little sub-par but I was able to have a shower and go downstairs on my own.

I'm very thankful, obviously. But God, how irritating!

the one where I get covid

POP QUIZ!

What has two thumbs and COVID-19?

 

This guy!

A little bit of backstory. When we last met I was feeling horribly smug about how easy (sort of) I found the lumbar puncture procedure. 

Well. 

Obviously this led to a SIX DAY headache. 

Steve's top tip: drink as much water as possible. Yes, the nurses told me to do this. But how do you know when you've drunk enough water?

(Apart from noticing when your head stops pounding, anyway)

I eventually got it right when the Divine Mrs. D bought me a water bottle that has hour markings on it. It's surprisingly easy when there's a sort of game involved.

Anyway. 

All during this time it became obvious that COVID was burning through Little Ms. D's school. Before Christmas they were encouraging the wearing of masks, keeping year groups apart and staggering times of the start and end of the day. Obviously a pain for parents with more than one kid but at least it cut down on the crowds at the school gates. 

However in January, everything reverted back to how it was before, including no recommendation about mask wearing. We thought it was insanity and it appears we've been proven right. 

We've been getting loads of messages from the school of confirmed cases, across all the year groups. So it was clear that something wasn't going well.

And at the start of last week - just when I was dealing with my post-LP headache - we found out that one of Little Ms. D's best friends had a confirmed case. At the end of the week she was going for a sleepover at my folks' house so we thought we'd give her a quick lateral flow test, which came back positive, same as the PCR test she did the following day. 

Both me and Mrs. D did a Lateral Flow test that weekend - both negative - but when we did the PCR tests, although Mrs. D's was negative, mine was positive. 

It is, to put it mildly, a massive pain in the arse. I was getting ready to get my COVID booster jab and my flu vaccine, prior to changing my MS medication. Ever since this damn thing started, we've been so bloody careful. And I still got caught out. 

I don't want to come across like Donald Trump *shivers*, but I feel like I've got a bad cold. Having said that, the brain fog is strong, and the fatigue is - dare I say it? - relapse-like. But that ain't happening. 

Infuriatingly, people continue to swan around without wearing masks. And you can't even blame them, can you? Not when the UK government keeps telling people that it's all over. 

Plus it appears to be really going for that whole herd immunity thing, and is more concerned with the economy and getting back to a normal which didn't really serve the needs of the majority of people in the country.

what's in a name?

Blah blah blah, it's been a while. Super busy, yaddah yaddah. 

I've always been a little uncomfortable with calling myself an advocate. A couple of years ago I went to a seminar about independence and MS treatment. I remember that I couldn't bring myself to refer to the stuff I do as "advocacy."  Instead, I just called it "Moaning on the Internet."

But I'm uncomfortable with the A-word because I really do think I only moan about stuff online. It's what Ada Lovelace / Alan Turing / Tim Berners-Lee / Tron would want. And I do recognise that some people really are great advocates. I have nothing but respect for them.

I suppose I've always been a little uncomfortable about making my MS the centre of my life. Just after losing my job I had an interview for a job with one of the UK's major MS charities (c'mon, there're only two - three or four at a stretch). While I was disappointed to be unsuccessful at the time, I can't think of anything worse than working full time on your own health condition. 

As an aside, I was talking to a friend for the first time in ages recently. I was talking about my podcast work and he asked, "Are they all about MS?"

Anyway, I think currently that I'm basically living next door (or at the very least adjacent) to MS. 

And it's super-dull and doesn't make for exciting blog posts. Not when I'm picking up disabilities imperceptibly, like coastal erosion. It all seems normal until you eventually turn around and realise that your living room is in the fucking sea. 

Picture of the author yesterday.
"I'm sure I used to get up these stairs quicker"

Lockdown has multiplied my pre-existing antisocial nature so that hasn't helped. And neither has the fact that I haven't been swimming for over a year. I can't believe how much I miss it. 

Anyway, back to advocacy.

The other week I clocked the fact that somebody' on Instagram referred to themselves as a MS Influencer. 

I mean, if they're joking that is some next-level darkly cynical shit. 

But if they're not joking.... On what planet is that the right word?

EDIT

Almost immediately after I published this, I got a message on Twitter from the one and only Jackie Z aka The Queen of GSD:

It's definitely a real word. I have complicated feelings about it but it's usually one used when someone is actually getting paid for their info and experience. It's not the right word but capitalism doesn't know how to pay people in our space without giving them a title that they use for other people who we expect to get paid. AND if we expect to get paid for our experience there has to be value in it for the company and they've deemed "influence" to be the reason worthy of payment

 Thanks for clearing that up, Jackie!

And to be perfectly honest, I've been paid for sharing my experiences in the past - at the seminar I mentioned above, for writing articles for MultipleSclerosis.net. So I don't have a problem with that. At all.

But that word, as Jackie said, isn't quite the right one.

adventures with mobility aids (and a fragile ego)

Just before Lockdown 2 came in, we decided to go to a park near where my parents live (and where I grew up). I knew that they had Tramper off-road electric scooters to hire so I called them up. After my previous experiences at National Trust properties, I didn't hold out much hope.

So, imagine my delight when the lady I spoke to told me that, yes, the trampers were available to hire that day. She also expressed dismay when I told her about our previous experiences - "Surely this is a time when everybody should be encouraged to go out?"

I could've hired the scooter on a 'Pay as You Go' basis. But by the time we got there, we'd already decided that I was going to sign up for the annual membership. Especially when we realised that it applied to six different sites across Derbyshire.

After a quick play around with the controls we were off. And no more than 2 minutes along the path I had to manoeuvre through a kissing gate. With a bit of encouragement, I ended up reversing into it and was on my way. It was super-easy to use.

Over the course of 4 hours I covered more ground on that park than I had probably done in over 20 years. And the ground was prett muddy and uneven. 

It was a great day for us all and any concerns I'd had about using an electric scooter were irrelevant.

Long-time visitors to this blog will know that I've struggled ENDLESSLY with the idea of adopting mobility aids - as I've transitioned from one walking stick, to two, to a manual wheelchair. But the idea of electric scooters seemed to loom largest in my mind.

So what changed?

Well, recently on walks with the family, I've felt like a (literal) burden, as family members run themselves into the ground pushing my chair.

This is in no way with regards to how they feel (I hope!). But I keep telling myself that I want to walk as far as I can. And then I find I can't walk very far. So I end up needing someone to push me in my chair, which inevitably reduces our days out. Or - more likely - I'll probably stay home and miss out.

But there's only so much of that I (or those closest to me) can take. And while I might think I'm being thoughtful to Mrs D by not going out with her and Little Ms D, it's really just a bit sad. Plus it's also pretty selfish. Why should Mrs D have sole responsibility for taking our daughter out?

Even so, an electric scooter always seemed like some tragic final stage in my "journey" (ugh). We've talked about it in the abstract and it always seemed too big in my mind.

How it actually felt, though, was totally the opposite. I felt (strangely) less visible on an electric scooter than I have done when I've been pushed around on my regular wheelchair. 

Was this just my own paranoia that people were looking at me as a helpless person to be pitied?

And, in my head, did driving an electric scooter make me more independent?

PLEASE NOTE: this is purely my experience. There is no judgement implied on anyone else's choices.

But I know that it's something I've struggled with - as I said, it seemed to be a much bigger deal in my head than it was in reality.

It was interesting that, when I was driving the scooter, we passed a young woman who was being pushed in a wheelchair. I didn't hear her, but apparently as I was passing she said "I wish I had one of those".

http://www.accessiblederbyshire.org/

song for a future generation

I am tired, I am afraid
My heart is full of dread
"Soldier" by Richard Dawson 

This was the unnecessarily "on the nose" soundtrack to my last #tysabri infusion which was no fun at all. It was so long ago, I'm almost ready to go back for my next one. 

I started writing a blog post during that infusion but it was so whiny and angsty that I decided to shelve it until the moment passed. 

Obviously I'm still waiting. 

In a sense, life is - for everyone - an endless, perpetual NOW. Things change and they stay the same. Rules change, restrictions are lifted but the results are the same. 

Life seems to have returned to how it was in February / March. My sleep has certainly returned to how it was then - sporadic and unsatisying!

A complete lockdown seems inevitable so we're stealing ourselves. We're trying to stay abreast of the developments but also trying to stay sane. Keeping things light for our daughter but preparing for when everything changes again. 

I can't help feeling that there will be some kind of global outbreak of post-traumatic stress if/when this ever ends. Yes, my flippant response to anyone asking me how it has been for us is, "Well, I don't go out that much so no change there". 

But really, the first lockdown came at a time when I'd got a little braver at taking risks. Longtime visitors will know that my self-confidence has taken a battering over the years, as my mobility has gone south.

(This is not a situation which is unique to me, obviously)

But at the end of 2019 and at the start of this year, I had been getting better. At leaving the house, at taking (small, calculated) chances. And in the last month or so I've been made aware that I've reverted to my past bad behaviours. Staying in whenever possible and having mild panic attacks whenever I do leave the house. And freaking out if things don't go to plan. 

The pandemic is an exhausting situation for everyone but surely it has to be particularly bad for anyone living with some kind of chronic illness. Not least because of the fact we're seen as canon fodder or collateral damage. 

And all this is even without considering the utterly terrifying prospect of Long COVID. 

But at the same time, we've seen that accessibility IS possible. More and more events have been streamed online. Working from home has been normalised. For god's sake, even my mum and dad are doing their grocery shopping online. 

With the emphasis on getting back to normal, going out to work and supporting the economy, are things eventually going to revert to how they were?

Maybe this will be the lasting trauma from COVID for the chronic illness community. The memory that there was a time when events were accessible and remote working was encouraged. A time when the general populace had a little insight into the fears that disabled / chronically ill people have lived with for years.

That your continued good health is not a god given right. That no-one's job is secure. 

After all that, it would be terrible if everything just returned to the way it was before. 

I am tired, I am afraid
My heart is full of hope
"Soldier" by Richard Dawson

National Trust and disabled access during COVID-19

This might come across a bit #middleclassproblem but stick with me.

We've been members of the National Trust for years. As parents of a young (and seemingly inexhaustible) child, we're always looking for ways to use up some of her energy. And getting out in the open air is good for us all.  

PLUS there is, at most properties, excellent parking, great toilet facilities and a place to get lunch and a decent cup of tea. Also, in our experience they really seem to "get" accessibility. 

We live pretty much smack bang in the middle of the country so we've got some great places to visit on our doorstep.  

Sudbury Hall can provide a buggy service from the car park to the property. A similar scheme at Calke Abbey can get you right the way across the whole property.

Our nearest National Trust site is Kedleston Hall, which you might recognise from The Duchess. 

On a visit earlier this year they provided an off-road wheelchair (which was like a regular one but with BMX bike tyres) that by all accounts was a lot easier to push on the short circular walk. It was certainly comfier than my own chair.

HOWEVER…

(You knew that was coming, right?)

We went to Kedleston last week. Obviously in the light of the Coronavirus pandemic, the hall isn't open and we had to book our slot to have a trip around the park and gardens. 

So far no biggie. Forward planning and preparation are the norm for us.

But when we asked if the off-road chairs were available, we were told no. We kind of expected it but afterwards we couldn't help wondering why?

Yes, we know about the pandemic and the bloody New Normal and all that. But...

Why is disabled access the first thing to go out the window? 

Is it too difficult to wipe things down between uses? Supermarkets seem able to do it.

We'd even be prepared to provide our own Flash wipes. 

*other antibacterial wipes are available

Like I say, we expected it. And to some extent we accepted it. 

But the edge was taken off our day. And it was exhausting. 

My chair is heavier to push so Mrs D was worn out. Because I knew she was struggling, I forced myself to walk more than I probably should have. Which was severely fatiguing, which in turn made my walking worse, which was distressing for my family to see. 

The worst thing is...

It's not just at Kedleston

The accessibility options at other local sites such as the ones I mentioned above are currently severely curtailed too.

It's enough to make me feel paranoid.

I've already talked about the fact that people with pre-existing conditions during this pandemic are like the red-shirted officers from the original series of Star Trek. We get it, we're disposable. If not a downright annoyance.

This article in today's Guardian by Frances Ryan notes the fact that, during lockdown, with working from home, cultural events and venues being accesible online...

It was frustrating and joyful, obvious and revelatory. The secret was out: the world could be accessible. Inequality was actually a choice.

But now that things are starting to open up, are those of us with access requirements just meant to stay indoors indefinitely? 

Now don't get me wrong. I know this is only the case with regards to our free time and doing things which could benefit our mental health. We should forget about doing THOSE. 

But if it's getting our butts back into work? 

Come out, come out wherever you are!

By the way, I know Judy G had some substance issues (that's putting it mildly), but the description to this clip is, "Dorothy is recognized as a heroin of Munchkin Land".

Dark times.

pip-pip

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.

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.

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.

careful what you wish for

Oof. Crazy busy!

1. I - bizarrely - have a nice and growing number of clients for my podcast business. And I'm getting paid!
2. I'm still not used to talking about my "clients". or my "business". Weirdness.
3. Most of these are just editing jobs so far but I also launched a whole podcast and got it onto Apple Podcasts, Spotify, Google, Stitcher...
4. I'm actually really good at this!
5. Even though I'm LOVING doing the podcast work, I recently applied for another job. I didn't get it but it was nice to go for an interview and not have EVERYTHING riding on it.

All of this is despite the fact that I officially "have limited capability for work and work-related activity". This is from my recent Work Capability Assessment (WCA), something which I probably should've had for my Universal Credit claim way before now.

The first part of this involved filling out... ANOTHER FORM!

Well, it has been a while.

This one was pretty intense. But once again I used the Benefit Advice Essentials Facebook Group for some advice. And as before it was really helpful.

At first glance I thought I could take a good run at the form. But looking at one of their information sheets, it pointed out two things:

• Parts of the WCA form are directly related to parts of the PIP form.
• The Department for Work and Pensions (DWP) could use the information from a WCA form to make decisions on PIP applications.

After reading this, I made sure that anything I wrote on the WCA form didn't contradict anything I'd put in my last PIP application.

I got it done and submitted, then spent a couple of weeks stressing about having to have another face-to-face assessment.

And then I got a letter through the post, saying, as above, that I have limited capability for work. With no need for an assessment.

Which at first seemed like a bit of a result - woo-hoo, etc.

At first.

But then I realised. I hadn't lied on this form. And thinking back, I didn't so much as bend the truth at all on my PIP form.

And then I thought - so maybe I really am that disabled.

Don't get me wrong, it's great that I should get the support I need, especially as I try to establish my new of working.

But nevertheless, it's a bit crap, innit?

(It's that kind of penetrating insight which you keep coming back for, right?)

no sympathy

I've noticed that when a celebrity comes out as having MS, the response of the online community can be a little... troubling.

Initially there's support for 'one of us', a new member of our own wonky club. Plus they're shining a light on our condition. They're demystifying it for the general population. They're showing that life doesn't need to end after an MS diagnosis.

And then... we can often seem to turn on them.

Selma Blair is the most obvious recent example. She came out in a really public way with some upsetting symptoms for anyone to deal with, let alone a young woman. Poor mobility, speech problems. Hard to deal with when you're an actress, right?

I think the snark started when she was spotted using an Alinker walking bike. These are pretty expensive bits of kit, with crowdfunding being the way most people are able to source one.

Did she even have to pay for her Alinker? Is she being paid to be seen using one?

Just recently she has appeared on US TV and Instagram sharing her experience of Stem Cell Treatment. And there've been some pretty harsh comments.

Things like:

"These people have all the advantages. They can't compare their journey to ours"

And:

"They're playing the victim card. I have friends who are dealing with worse and are more inspiring"

FULL DISCLOSURE: I know where this kind of thinking comes from. I'm not judging, it's only natural.

But the thing that can be missed with reactions like this is the fact that Selma Blair is a young parent who has been blind-sided by a life-changing diagnosis.

I think we can all empathise with what she's dealing with. And I speak from my own experience that I have been willing to try anything if there's the slightest chance it can help (hello, Reiki!).

And the fact is, if money were no object, wouldn't you be willing to try anything for the sake of your health?

At the very least (and I'm hyper-aware that this might not show me in the most charitable of lights so bear with me!), I'm quite happy for Selma Blair and Jack Osbourne to be the guinea pigs for Stem Cell Treatment.

Let's face facts, as amazing as it potentially is, it's not yet a fully proven treatment.

Look at what happened to Caroline Wyatt. The BBC journalist paid to have stem cell treatment in Mexico in 2016. And following six months of feeling good she has eventually arrived pretty much back where she was in the first place. In an interview with the MS Trust earlier this year, she said:

"I do know people for whom it has halted progression, equally I know people who've been worse as a result and I know of one person who died."

So I'm more than happy for research to carry on. And for that research to be robust and trustworthy, we're going to need test subjects.

Any results - positive, negative or indifferent - will feed into future treatments. As if on cue, this (from the MS Society) popped up on Twitter earlier today. More please!

We're all dealing with the same beast, regardless of any financial or social advantages - so let's try not to pick fights with each other.

Or as my pithy yet degenerate friend SwissLet put it in a recent comment on this very blog, "Don't be a dick".

It's a lesson I could do with heeding myself.

wheelchair envy

To sort out my little blueberry toes, I recently had to get a blood test. I always find there's a real sense of camaraderie in waiting rooms. People just chat and pass the time waiting for their number to be called.

Any frequent reader of this blog will know that my attitude to my wheelchair can be described as ambivalent at best (if not downright hostile).

When I was getting it I learnt that if your chair can fold up and/or come apart it tends to add to the weight. So there's a payoff for the convenience.

But in the waiting room on that day I noticed that the woman sitting in front of me had a super snazzy set of wheels.

After passing the time of day, I had to say, "Excuse me for asking, but is your wheelchair as light as it looks?"

She told me it was and was made of titanium. The frame is also totally rigid, although the wheels can come off.

It's a Quickie like this one (stop sniggering at the back).

I said that my own chair was super heavy. And even though I genuinely wasn't angling for it, she asked me if I'd like to have a go.

As a glasses wearer I've always hated when people ask if they can try mine on so I said no thanks. But she insisted.

Please note that I find propelling myself in my chair totally exhausting. It's so heavy!

But this was like going from an old car to one with power steering. I only had to brush my hands past the wheels and I was off.

With her encouragement I went off for a scoot around the hospital. In a couple of minutes I covered a lot of ground, zipping down corridors. The difference between it and my own chair was astonishing.

When I reluctantly returned her chair she said that it had been custom made to her specifications. And it had cost around £4,000 to get one in the UK.

Ouch.

Don't be surprised if I reinvent myself as an Instagram or YouTube influencer in the forthcoming months.

yes my pretty, one day you shall be mine...

live music and accessibility

Last weekend I had pretty much the perfect disabled-person's gig experience.

A friend spotted that the buzziest of current UK buzz-bands, Black Midi, were playing at a nearby art venue. Along with another friend, we've been listening to them for the past few months and we were lucky enough to get tickets - they don’t publicise their gigs and have a minimal online presence.

I offered to drive because I wanted to take my wheelchair - pretty handy having somewhere to sit and I wanted to make sure that I wasn't too fatigued for the drive home.

The venue's website states that they "have an accessible building with lift access on all floors". But I've been burned before so on the afternoon of the gig I called them up to make sure that it was going to be ok. (Yes, it was last minute but we only found out about the show a few days beforehand - like I said, minimal online presence).

The person I spoke to could not have been more accommodating, telling me which entrance to use and that there would be somebody waiting in the (closed) shop to take me and my friends down in the lift.

Through past experience I wasn't entirely convinced that it would all pass off so painlessly. But I'm pleased to report that everything worked beautifully. There was even another person waiting for us when we got to the bottom, and once we were down there it was all beautifully flat.

I stood for both sets - using my sticks or leaning on the back of my chair - and both bands were brilliant.

The support act were Nottingham's own Rattle and during their set Black Midi's Tour Manager came up to ask if I wanted to go to the side of the stage for the headline set. I was really pleased to be asked but I'm a bit Old Skool (as well as just generally old) and I like being in the middle a bit further back. It turned out that the position he was offering me was directly behind the drum kit and, as Morgan Simpson beats the crap out of his drums, my ears would still be ringing now, a number of days later.

I caught up with the Tour Manager at the end of the night and thanked him for his consideration and for the fact that they had come to a venue which was so insanely accessible. In recent years, I've had to miss a few of my favourite up-and-coming bands because they've played at a venue which is only accessible by stairs (with toilets only accessible by more stairs). Yes, I can get to Arena venues and bigger spaces but sometimes you want to go somewhere up bit more up-close-and-personal, don't you?

He expressed dismay that this was still going on - "Isn't that sort of thing illegal now?"

Well, yes, technically. It should be the norm that live experiences should be accessible to all shapes, sizes and capabilities. But we all know that this don't necessarily make it so.

I love going to gigs and I don't get to do it as often as I like. It's still mildly frustrating that we have to call up in advance to ask questions and lay out the details of our needs to complete strangers. But this goes to show that it can be totally worth it. And an increasing number of places accept the Access card as proof.

By the way, the gent who let us in at the start of the evening was even there to let us out at the end of the gig. Bravo, Nottingham Contemporary. And many thanks to my lovely mates who pushed my wheelchair for me when I needed it.

If you want, you can even hear a lengthy email I sent into the lovely Marc Riley on BBC 6 Music the following day - it's a long email but he read the whole damn thing (with a few interjections of his own) from 09:20 here.

where does YOUR anxiety go?

Mine goes directly to my legs.

I just did a search for "anxiety legs". This is the top search result:

It is common for anxiety to cause feelings of numbness and tingling. This can occur almost anywhere on the body but is most commonly felt on the face, hands, arms, feet and legs. This is caused by the blood rushing to the most important parts of the body that can aide fight or flight.

Sounds a bit like something we all know and love, right?

And that's my anxiety obviously. But where is it coming from?

Well, I've officially finished my job for the photography festival. But the lack of work isn't even the thing that's making me anxious. As I said before, I was hoping to have a bit of a break between jobs anyway, plus I still have my FUMS podcast work.

The Fampyra tablets are having their usual plateau at present. The MS Nurses have said in the past that this is just how it goes - it works great, then it just seems to stop. So I'm currently having a fallow week (all those GCSE History lessons on crop rotation obviously went into my brain somewhere).

Plus I'm taking an extra week between Tysabri infusions this month, in order to avoid paying an extra £300 for a short summer break (school holiday price rises). So medication issues might be a thing.

More than anything else, I'm just not sleeping at the moment. I'm averaging about 4-5 hours a night, and at least once a week I'll have a night when I just don't sleep at all.

Because of all this I had to cancel my appointment at the Gait lab to check in how I'm getting on with my FES (Functional Electrical Stimulation).

Similarly, I've had to roll back a little on my plan to go swimming more regularly once I was "between jobs" again. I describe my swimming technique as being loosely-coordinated drowning-avoidance at the best of times.

Lord knows what it would be like at the moment.

Image lifted from this great old series of UK Public Information Films - stick around for the brutal ending!

the (work) conversation

When I was first diagnosed with MS I was working in a theatre. I tried to keep it on the DL but made sure that the colleagues I worked with every day knew what was going on.

The following year I had a couple of freelance roles. And in each organisation I made sure that I had The Conversation and at least one person knew about my condition.

After that I got my job at my most recent employer. I had The Conversation and told my boss (on the first day!) that I had MS. I was able to keep this fairly hush-hush until I had two relapses in the course of a couple of months. The large amount of time off meant that I couldn't really hide it any more.

So my employment history pretty much consists of a series of 'comings out'. And for the last few years - as my invisible disability has got more visible - I've been pretty much out.

As a member of the CULTURAL ELITE, the people I've worked with have stayed fairly constant - we all might've moved from organisation to organisation but the faces tend to stay the same.

So when I had the interview for my current short term contract, I was able to discuss my health openly, as I knew two of the people in the panel fairly well. Not to say what I couldn't do, but focusing instead on what I can do and do well.

My role offers a level of home working and on the whole it has been good so far. Even so, when I've gone into work, I've found waking up, washing, breakfasting, dressing and travelling to an office for the first time in two years utterly banjaxing.

I recently needed to have a variation of The Conversation with my line manager - the "I know this is part of the advertised role, and we skirted around it in the interview, but the thought of doing it is making me ill and I can't do it and I don't want to".

Y'know, the one where you feel like a complete liability and a dead weight.

I've said it before - and admittedly I've been burned by it before - but people working in arts and culture can be bloody lovely. When I told my line manager that I hated feeling like I was letting her down she said that she hated the fact I had to deal with these issues. Her understanding, and her comment that everybody really appreciated everything I was bringing to the project, was like a load off my mind.

Further proof that I was settling in came later that day. I'd left the office and said goodbye to two other freelancers working alongside me. I nipped to the loo and when I came out, one of them said "are you still here?!"

Then she darted off, saying "I'll race you to the lift!"

Cheeky sod.

Truly I have found my people. Again.

driving, mobility and the 20m rule

I've always loved driving, ever since I passed my test *gasps* over a quarter of a century ago.

When I passed (second attempt, like all the best drivers) I'd always look for a slightly longer route and go for meandering pointless drives for no real reason. Years ago, an ex-girlfriend completed some postgraduate study in York and pretty much every weekend I'd do the 180 mile round trip, returning back home in the Monday morning rush hour. And I liked it.

I've always been a safe driver and my MS hasn't affected my abilities. In actuality, the fact I was able to drive was used as a reason my Personal Independence Payment (PIP) application was turned down last year.

See? We're not joking when we say that this system actively penalises people for their independence.

Anyway. Full disclosure: over the last few years there HAVE been a handful of incidents when I've been driving long distances and my left leg has gotten tired. Which could mean that gear changes required careful planning.

Which is all well and good during normal driving. But recently I decided it was time to stop riding my luck.
I've always driven with manual gearboxes but a couple of months ago we got our hands on an automatic car. And it's brilliant.

It's taken so little time getting used to driving without changing gears that I can't imagine going back to a manual car. Aside from anything else I'm not tired when I get to where I'm going. Plus not having to think about gears allows me to concentrate on everything else which is going on.

I personally decided not to explore other adaptations but what is available is staggering.

Help for driving can include hand controls, steering aids, pedal modifications. Transfer plates and swivel seats which help people get into their car.

There are even roof boxes that can pick up and store a wheelchair, like some kind of benign Transformer.

Obviously these things come at a price. If I hadn't got the enhanced mobility part of my PIP award I would probably have had to give up driving - maybe not today but soon.

There are a lot of people with MS who aren't getting the PIP settlement they should be entitled to and the 20 metre rule is the main reason. It's such a cruelly inflexible rule - especially when MS is a condition which fluctuates on a day-by-day (if not hour-by-hour) basis. It demonstrates a complete inability (or unwillingness) to engage with the reality of the condition.

I've grumbled about the MS Society over the years but their ongoing campaign against the 20m rule is one of their best.

when is independence not independence?

When it's independence in Multiple Sclerosis!

Last week I was invited to attend a workshop in London on this very topic, the first time I've done anything like this.

The objective of the workshop was to:

• Look at what the concept of independence means to people with MS and their carers 
• Explore how MS health and care services can make achieving independence a core objective, to inform the development of policy and practice recommendations

whiteboard? post-it notes? it's a WORKSHOP!!

All in it was a pretty interesting day and I do enjoy chatting to other people who get what it's all about. Also in attendance was a MS Nurse from the Queen's Medical Centre (she taught me how to inject Rebif back in the day!) and someone from the MS Society.

However, it's grimly ironic to note that of the people with MS at a conference on independence, every one of them came with a carer or companion.

For my part, Mrs D was busy so my Dad came with me. Aside from his help with the cognitive and anxiety-raising issues associated with travelling to London, we took my wheelchair. This was mostly for use in getting around train stations - aside from this we were either getting taxis, and obviously I was rocking my sexy double sticks.

In order for me to be independent enough to attend this event, it took:

• A lift from my father-in-law to and from our local station
• My father attending the event with me and transporting me by wheelchair when necessary 
• First-class train travel both ways - for extra room, and less chance of hassles with dodgy loos or gits in your seat
• Pre-booked assistance with getting the wheelchair on the train - I walked to my seat both journeys but it was meant to help my Dad get the chair on board. AN ASIDE: the assistance was provided in each instance (we've all heard horror stories about assistance simply not turning up) but my Dad is quite impatient so we only used it on our outward journey. Every other time he just made it work.
• Taxis - I don't need the hassle of dealing with the Underground

And that's not counting the rest of my family and all the medical professionals who get me to where I can even consider travelling to the extent which I have this year.

Aside from remaining in employment, concerns about financial security and the wobbly nature of the welfare state, this was one of the main things we talked about at the event - the fact that each of us has a silent majority working behind the scenes to keep us going.

So much for independence! It's like the African proverb, "It takes a village to raise a child".

But in my case, it takes a small army to give me any kind of independence.

eye tests at home

As a speccy with MS it's important to get my eyes tested regularly. It took me several years to find out why - the Central Nervous System [CNS], under attack from our overactive immune system, joins up directly to the back of our eyes.

Anatomically and developmentally, the retina is known as an extension of the CNS; it consists of retinal ganglion cells [neurons located near the inner surface of the retina], the axons of which form the optic nerve, whose fibres are, in effect, CNS axons.
from https://www.ncbi.nlm.nih.gov/pubmed/23165340

It's pathetic how I was so not curious about any of this stuff before. But I'm lucky that I've never had any instances of Optic neuritis.

*touches wood frantically*

According to the MS Trust, for around a quarter of people with MS, this is the first symptom they have.

I recently realised that it had been about 4 years since my last test. And back then my vision hadn't altered enough then to warrant the expense of new bins.

Which meant that my glasses were around eight years old. Which obviously included a number of years where they'd been under attack from a curious and 'handy' Little Ms D. After years of accidental shoves and grabs they hadn't fitted me properly for ages.

However, with my mobility being what it is, getting to the opticians can be a major operation, involving the car, someone else, as well as grudging use of the dreaded wheelchair.

So when Mrs D heard that Specsavers offered home eye tests for people in receipt of certain benefits, it seemed like the perfect solution.

It was really easy to arrange but quite odd in practice. Two guys came round to my house, got me to sit wherever I was comfortable, closed the blinds, and the whole test was done on an iPad. This was placed on the other side of the room for the standard eye chart and handed to me for the close reading tests.

Obviously they weren't able to do a full retinal scan (which I always quite liked in the past) but I didn't feel like I was being shortchanged. They really had a good look in there!

A couple of weeks later they came back round with my new specs. They even brought a little mini heater to enable them to make the usual last-minute adjustments.

It seems like, as with so many things, arranging an eye examination at home can be a bit of a postcode lottery. This page on the RNIB site offers some good information about locating this service wherever you are should you need it.

As for my new glasses? I'm really chuffed with them.

SURPRISINGLY UNCOMFORTABLE WITH SELFIES

However in researching this post, I've seen some utterly gross anatomical pictures.

We really are just fleshy bags of wires and guts, aren't we?

travelling around venice by wheelchair

Last week we returned to Venice for the first time in 11 years. How would we manage with a wheelchair?

In my more downbeat moments, I'd been quietly (and not so quietly) referring to this holiday as my last chance to see Venice. Regular visitors will know my mobility has been steadily declining, even before the two relapses I had last year (from which I'm still recovering).

And even though it's been a while, I can remember enough about Venice to know that it's not the most accessible of cities.

But because we didn't get to go away as a family last year, we booked this holiday, with my parents coming along as backup. Anyway, we wanted to show Little Miss D where we got married.

We were staying at a nearby resort called Lido di Jesolo. Mrs D and I had been a few years back and thought that it would be a perfect place to visit with a family. It's super flat, miles and miles of beaches, hotels, bars, restaurants and amusement arcades. It also seems like it's the sort of place where Italians go on holiday, which is always pretty cool.

The flatness of the resort was a pretty big seller for us because - like Philadelphia a few months back - we were traveling with the wheelchair again. And a nightly passeggiata has always been a favourite part of any Italian holidays we've had.

I'll talk about the journey in another post because there are just some weird things which seem to happen whenever you travel with a wheelchair. Completely frustrating and totally avoidable things to my mind, but here we are.

But for one day we went over to Venice. We booked on an organised trip for a little for peace of mind - had mobility not been an issue we could've "roughed it" and organised a much cheaper way. But as I've noted before, being disabled is EXPENSIVE.

One benefit was that we'd be on organised buses from our hotel with private boats over to Venice, with some assistance at either end. One of the guys who helped me on and off the boat was so attentive that I complimented him for his beautiful dancing.

First up. Here's the big news...

[drum roll...]

Venice has got ramps! 

That's right, Venice has got [admittedly, not many] RAMPS on some key bridges. 

These are on the four biggest bridges which lead from the main drop-off port, taking you past the Hotel Danieli and the Doge's Palace and into Piazza San Marco.

Without them we would not have got much further at all.

After that, we used a combination of Google Maps, a free Ulmon Venice Travel Guide app and our own failing memories to navigate a mostly bridgeless route through the back streets.

Firstly Venice is a typical busy European city. And despite the claims of the people with whom we booked our day-to-night tour, not everyone leaves at 5 o'clock (although it does get noticeably quieter). If you're ok with that you'll be fine.

Especially if you know to walk on the right hand side of the paths.

The map / app combo helped us get about really easily. I can't remember there being too many bridges which I needed to cross on foot (with my two sticks). And most were 5-6 step bridges - easy to do if you can slump back into your chair afterwards.

One thing we wanted to do was see Palazzo Cavalli where we were married almost 12 years ago. By this point we were all exhausted (the temperature was in the mid 30s the day we visited). But looking at the maps, there was no way to get there without crossing a bridge.

I was defeated. Mrs D, my Mum and daughter pootled off to see it while me, my Dad and chair stayed on the other side. I felt so downhearted.

But then I got mad.

If this was my last visit to Venice, I was damn well going to see where I got married.

I got out of the chair, dragged myself up and over the bridge (my dad followed with chair) and made it to the doors for an emotional photo opportunity with my girls.

you have reached your destination

So Venice. It's still beautiful, bonkers and back-breaking (thanks, Dad). The paths are pretty good so my chair managed well. And if you're bloody-minded enough, you'll get where you need to, regardless of MS.

We're lucky that we've pretty much done Venice over the years. There was nothing in particular that we needed to see, we just wanted to have a mooch around and take it all in once more.

It can be done.

Will we do it again? That remains to be seen. But if not, at least I had the opportunity to say goodbye to it.

beware the locals (1)

beware the locals (2)