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.


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.


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?

Friday, 10 August 2018

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)

Friday, 27 July 2018

you too can be a PIP / ESA assessor!

In my search for work, I have signed up for many email alerts.

Imagine my surprise to receive this one.

Yes, it certainly does seem to be for a Personal Independence Payment (PIP) or Employment and Support Allowance (ESA) assessor. You may find it as interesting as I did!

Posted here without comment...

(Excuse the screen grabs from my phone - full text included below)

Full advert text:

My client based in Derby is looking for a number of Disability Assessors to join their team.

Full training will be provided and hours of work will be during the day from Monday to Friday.

Starting salary is £34,000 with additional benefits including paid holidays, life insurance and company pension. 

Undertake an assessment of an individual who is making a claim taking into account all of the information presented including any supporting evidence e.g. the claimants completed questionnaire and information from GPs etc

Carry out a comprehensive review and analysis to enable you to complete a robust, structured report which will then be presented.

This report will contain a detailed history of the claimant condition(s) including information gathered on the functional impact of their health condition or impairment on their daily living and mobility, their current medication and treatment

You will provide a full justification explaining how you came to these conclusions from the evidence gathered and define the probable timescales over which a health condition or impairment may affect the claimant.

  • Qualified Nurse, Occupational Therapist, Physiotherapist or Paramedic
  • 2 years post qualification experience
  • Valid PIN
To apply for this position please email your CV via the link provided

Job Types: Full-time, Permanent

Salary: £34,000.00 to £38,000.00 /year

  • Paramedic: 2 years
  • Nursing: 2 years
  • Physiotherapy: 2 years
  • Occupational Therapy: 2 years