Wednesday, 31 October 2018

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.

Monday, 29 October 2018

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.

Tuesday, 16 October 2018

snake oil radar

In my ongoing health "journey" (ugh) I've tried some odd things. Reiki. Wackily restrictive diets. Prescribed medications which made me go psychotic.

But even I would draw the line at drinking my own urine.

I'm sure* that you will agree.

But the idea of urine therapy is something that popped up on my snake oil radar yesterday.
Don't worry - this isn't coming from any recognised or qualified source. It's just a crank on the internet called Kevin Hinkle, a self-proclaimed urine therapy advocate (is that what's on his passport**?).

In a long and rambling Instagram post (which I won't dignify by linking to here) he talks about its "known" ability to heal disease, including "cancer, arthritis, multiple sclerosis and hundreds more".

He even claims that it will whiten your teeth - common sense tells me that would be the LAST thing it would do. 

Don't worry, he includes some hard-hitting science. 
Because it is created by your own body, it helps to re-educate your immune system as what is foreign and what is domestic. It helps to teach your system and fine tune it to recognize pathogens and invaders. It's similar to reading a book for the second time or watching a movie for the second time.
So that's fine then.

Apologies for the snarkiness. There might be something in this, there might not***.

I've had a deeper look at his Insta profile (so you don't have to) and he spends a great deal of time rubbishing the 'deadly neurotoxin' fluoride, while talking about how the sun protects you from cancer (which can be created by the chemicals in - you guessed it - Sunscreen).

More importantly, this is yet another example of the fact that the Information Superhighway (as all the cool kids are calling it) is a wonderful and scary place.

Anyone can publish something online and reach a potentially massive audience - which is a GOOD thing.

HOWEVER

Anyone can publish something online and reach a potentially massive audience - which is a TERRIFYING thing.

* = fervently hope 
** = pissport
*** = probably isn't

Thursday, 4 October 2018

i was looking for a job...

WARNING: contains motivational claptrap
the CULTURAL ELITE in a salon yesterday

Recently there has been a weirdly high number of suitable jobs for which I could apply.

It's strange. It has been a struggle and most of them have been of the "work up application, submit, get no response at all" variety.

But recently a position came up at a city-wide photography festival, a role that was my first ever freelance position (about 12 years ago now!)

So I thought I'd give it a go.

The job description was interesting, in that the vast majority of tasks were desk-based. But there were a couple of curve-balls involving taking journalists on walking tours round the festival.

With the best will in the world, this wasn't going to be something I could do.

I talked it over with the divine Mrs D and she persuaded me to go for it. Show them what I can do and negotiate the rest if and when the time comes.

I had an interview earlier this week and it was fine. Part way through, they asked if there was anything about the job description that I was concerned about. So I told them (even though, as I'd walked in with both sticks blazing, they would have guessed).

After a written task it was over. I felt it had gone ok but didn't hear anything that night.

As the following day progressed with no word at all, I started beating myself up. That job should've been a no brainer. What had I done wrong? Mrs D was more of the opinion that, if I didn't get the job, she'd want to know why. We know people shouldn't discriminate on the grounds of disability but, y'know, they do.

Long story short, they called at around 4.30pm to offer me the job.

It's part time for seven months and I can do a lot of the work (which is totally within my skillset) from home. Perfect.

So for the next seven months, I'll be a fully paid up member of the CULTURAL ELITE again. Did I ever really leave?

(As an aside, I looked for an image of the CULTURAL ELITE to illustrate this post. But on looking at the second image which came up on Google, I realised that I have worked with three of the people in the picture. And I know the photographer. I do not know ANYONE in the image above!)

If anyone reading this is always seeing jobs which they can 85-90% do, don't let the other 10-15% - which might be beyond your physical capabilities - put you off. Have faith, know your worth, and go for it.

(Told you!)

Thursday, 6 September 2018

take a picture, what's inside

I don't want to sound dramatic, but my first MRI scan was in a kind-of Eastern Bloc-era iron lung in a pitch black room.

So my MS diagnosis came from a machine which was (in my mind) similar to this image of Agent Jeffries (David Bowie) from Twin Peaks: The Return.


I don't think my brother has ever forgiven me for using a mix CD he'd made for me as the soundtrack to this (genuinely traumatic) experience. I haven't played it since.

The scans I've had ever since have been perfectly lovely, however.

Rooms filled with light, with fresh air pumped into the MRI chambers and absolutely charming staff.

Like all things MS, I get that I'm insanely lucky with this postcode lottery. But again say I - GOD BLESS THE NHS.

It's probably a good job that the MRIs are easier to manage. Because after having one scan in 2005 and not having another one until ten years later, I'm know having them multiple times a year - particularly since starting Tysabri. This is to check for physical signs of Progressive multifocal leukoencephalopathy (PML).

Incidentally, my latest JC virus test came back positive but slightly less so than before. Even though I'll always be considered positive for the JC virus now, it's good to know that it can go up and down.

Not that I can do a damn thing to influence the direction of the count, mind.

I had my latest MRI scan earlier this week. It was pretty brief - around 15 minutes - as I only needed my head doing. I asked if they could play some music into the room to help pass the time - the metronomic soundtrack of 10 loud clangs followed by 14 less emphatic beats gets pretty wearying.

(Yes, I counted them. I said it was a lovely experience, I didn't say it wasn't tedious)

They popped on XFM which happened to be playing "Heart-Shaped Box" by Nirvana. I don't think I've heard that properly since I was researching my dissertation, which was all about the semiotics of alternative music in the mid-1990s.

It might sound like a Mickey Mouse dissertation but I got my degree from a proper University, I'll have you know.

Anyway, it was loud (quiet-loud) enough to cover the MRI. So that worked.

Even though this is inspired by her own experiences of an MRI (IRM in French), Charlotte Gainsbourg's song probably wouldn't have helped all that much.

But this live version is pretty great. And the video is way better than the 1990s MTV monstrosity which accompanied "Heart-Shaped Box".

Wednesday, 29 August 2018

live-blogging emotional distress

[The following was written earlier today on my phone]

Believe it or not there is an element of planning which goes into these posts. Even if they have an air of the inane ramblings of a grumpy old fart.

This being MS, however, there's always something which can bring you back to earth. More often than not, explicitly so. 

As I write this I'm in Wales with Little Ms D, my parents, my brother and his kids. So far it has been a non-stop cavalcade of lazy beach days, seaside food and amusement arcades. And I've pleased myself (and others) with the amount of walking I've done. 

Was I too pleased with myself?

No matter. Because early we today, after a good while engaged with the serious business of building some sandcastles, I found I couldn't get up. And when I did, I lost my balance and - in the most drawn-out slow motion scene ever - I ended up falling into the rock we'd parked ourselves up against.

Grazed arms, jarred back, bruised ego. 

Or, in my brother's more positive version...

I fell into a hard rock wall and didn't split my head open. 

Can't argue with that kind of logic, right?

I lay on the floor for a good few moments. I was pretty happy down there to be honest.

I'd forgotten that I can't really squat on my haunches, even for a short while, without my shitty legs packing up on me.

Later, when walking up to buy an ice cream, I was unable to pick my feet over a clump of seaweed. So flat on my arse again.

Bruised ego 2: Electric Boogaloo.

After initially wanting to go back to the holiday home I decided to park up on a bench. Which is where you find me.

I'm currently watching my daughter play football with her cousins. I hope she doesn't ever think I was voluntarily absent from scenes like this. And I hope she knows that I wish with all my heart I could do all the normal Dad things.

Thursday, 23 August 2018

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?