philly state of mind

One this day four years ago, myself and the divine Mrs D arrived in Philadelphia to attend the HU Connexion 2018 Event. That whole weekend (we flew to the USA for a WEEKEND) seems like it's from another planet. 

1. We boarded an aeroplane
2. We went to another country
3. We stayed in a hotel
4. I spent a day and a half, in a room that was filled with over 100 people from all over the world
5. Not only were these people all clinically extremely vulnerable, but nobody wore a mask
   

Madness!

I know I've spoken about this on more than one occasion the past. In fact, I spoke a little about it on a podcast that I was on recently. 

But talking about it on that episode, it hit me again how very important that short trip was.

We were in a pretty rough place at that time. It was just over a year since I'd lost my job. Since then I'd done a bit of short-term freelance work. And then promptly had the most physically and mentally debilitating relapse of my life. 

At the same point in 2017, I was going through the first of my two attempts to get PIP. I think by early 2018 I'd been turned down for the second time, so we were heading down the tribunal route. 

As well as all this,  I was getting no closer to finding meaningful work. And the month before the conference, Mrs D's employers decided that her job was actually a temporary contract. So that was that. 

The idea of going to Philadelphia had been rumbling under the surface since the start of the year - initially I was thinking about going with my Dad. 

But when we found about Mrs D's job, with everything else that was going on, we just thought sod it. Her last day at work was the Friday, and we flew out early Saturday morning.

And the whole trip gave us a massive boost. We could actually travel on our own, with a wheelchair.

Admittedly we didn't go that far while we were in Philadelphia but still. Baby steps.

Later that year we retuned to Italy (with my wheelchair) for a great holiday. I got my PIP settlement. And I got another temporary marketing contract, which helped to keep the wolf from the door.

Obviously - and perhaps most importantly - I met Kathy from FUMS and Patients Getting Paid in Philadelphia, and through her I now have a job that I love and am actually good at, which I can do from home. 

So yes. It was an important break for us. And because of that, Philly will always have a apecial place in our hearts.

up, up and away?

First off, I know there was a big one-year anniversary yesterday. This post is about something else. And I know that my privilege is that the past year has left my family and I mostly unscathed. 

Three years ago today, myself and Mrs D nervously made our way to Philadelphia for a one-and-a-half day conference. Our first time travelling with my wheelchair, and our first time in years travelling just the two of us, even now it seems mad. But it was so needed. 

December 2016: I lost my job and gain a whole mess of financial insecurity. Also at this point I was finishing the first of two failed PIP applications. Good times. 

January to June 2017: I begin engaging with the U.K.'s Kafka-esque benefits system. Dispiriting, especially when combined with applying for many jobs. I eventually got a short term marketing consultancy position. When this ended in June I ran headfirst into two back-to-back relapses, with two separate courses of steroids. As I'm recovering I have my first face-to-face PIP assessment. I think it went well. It did not, and in July my application was turned down. 

August 2017 to January 2018: I reapplied for PIP alongside applying for a number of different jobs. None of these applications were successful, and I was turned down for PIP in January 2018. We then began the appeal process. 

Around this time I got a message from Health Union about their conference in March in Philadelphia. They were offering free accommodation as well as meeting a chunk of our travel costs. For a one-and-a-half day conference. What a mad idea. Who ever thought of going to Philadelphia?

By February we'd received a number of knock backs so it seemed like we had nothing to use. Which is where we came in. 

We flew from Manchester early on Saturday morning, arriving in Philadelphia by lunchtime. A bit of sightseeing on Sunday, a full day at the conference on Monday, finishing at lunchtime on Tuesday, one last wander around, flying overnight and getting back home mid-morning on Wednesday. 

It still seems mad that we did it. But everything seemed to pick up following that short trip. 

In May I got my PIP award (and a couple of years later I reapplied and it was changed into a 10-year settlement). In Philly I met Kathy from FUMS and this obviously led to me following an entirely new career path. 

But the main thing was, it really gave us a huge boost. It was a crazily short trip, and fairly decadent. But at that point we really had nothing left to lose. 

In this case, it was a reminder that travel really can broaden our minds, and showed what we, personally, could achieve. I'd happily go back there - just as soon as I can think of an aeroplane as anything other than a high speed tube of death, crammed full of germs.

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.

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)