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.
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)