Where in the world…

I don’t know why but the other day I started thinking about where I have been, which countries I have visited and thought I’d expand the list into a blog post.

Picture heavy!

Wales is where most of my early holidays were. Generally on the beautiful Llyn Peninsula with its beautiful beaches and cliffs and little villages.

Where fairies dwell...

I went to Denmark when I was about 7 and would love to go back. We stayed by a beach which sounds lovely but a storm had washed up hundreds and thousands of jellyfish… It was hard to see sand between gelatinous blobs…

When I was 14, I went to the south of France on an exchange trip. I also went to Disney Land Paris that year on a Girl Guide trip. That was also the year I went to Austria, skiing, and came down with the flu in the airport going out…

I went back to France a couple of years later, in a campervan with my family. We drove down to the south and wound our way back north. We repeated the trip, with a different route, when I was 18.

Snails
Snails in France

Somewhere between France and France, we headed north to Scotland for a few nights.

I went over to Ghana to volunteer in a remote village when I was 19 for a few weeks. We helped to build a school and I learnt to plaster, a skill I have not used since… I also learnt how to carry buckets of water on my head!

Boy
A young boy in Ghana

Whilst we were in Ghana, we were invited to attend a funeral in Togo so we trekked from our village to their village. It was the funeral of the estranged wife of the chief of the village we were staying in. The border was marked by a small stone on path, a path which was only wide enough for single file people.

Next up was Rome in 2008. It was incredibly hot, and my sensible sandals managed to give me so many blisters that I crumpled in a heap on the pavement and cried…

St Peter's
Circus Maximus

I spent a lot of time in Scotland during my last year at uni, specifically Glasgow, more specifically the West End with it’s wonderful cafe and book shops. That autumn we wandered through Kelvingrove Park with crisp leaves on the floor…

Autumn Colours

2014 was the year of travel. I had a little extra money and was starting to become more disabled by my health. I knew I needed to go on some of my dream trips before I physically couldn’t. First up was a combined trip to Bali and Lombok.

DSC_0095 (3) MO
Sunset in Bali
DSC_0049 (2) MO
Water Temple in Bali
DSCN1006 MO
The beautiful beach where I spent my birthday!

A few months later I had a long weekend in Brussels.

There was a trip to Edinburgh and my final trip that year was back to Scotland. I took the train, a bus, another bus and a boat to the Summer Isles. There I spent a week surrounded by water and heather, writing, doing art, making books and reading.

tanera
tanera

Next up was Cambodia where I saw fireflies for the first time, along with the ruins of temples and river dolphins.

DSC_0096 e bw
Photo11_11

The last time I went out of England, was a trip to Ireland. Despite it having been horrible weather the week before, I struck gold and the sun shone brightly. As with Bali, Lombok and Cambodia, this was a tour run by people who lived in and loved the country. We were a small group and we got to go to some off the beaten track places.

Photo36_36
DSC_0368 (2) levels shadows
DSC_0308 (2) levels

I hope this little run through of my travels has taken you outside of your home for a little while. Where in the world have you been? Where in the world would you like to go?

A Grumble About Train Accessibility

I think it’s important to note that before the wheelchair, I loved trains.  I was very used to train travel.  I knew what I was doing.  I wasn’t a nervous traveller.

This all changed when I started to need assistance.

To illustrate, let’s start with the asking for help portion of the drama.  There’s an online form to complete (you can ring but eek, phones.) and you fill out all the details of your journey, what help you need etc. It seems like it covers everything.

BUT.

It’s not valid until they ring you back to repeat everything.  And there’s no guarentee they will ring you.  I’m travelling Saturday and as of yesterday, still no call. I have to ring them. Over 20 mins on the phone repeating everything again. The person mentioned three different databases she needed to check and didn’t seem to know how to use any of them.  At one point she tells me she can’t book me a wheelchair space because it’s a different train line.  They are supposed to be able to deal with your entire journey.

Upshot seems to be, I have to book the assistance with this provider but the space with another.

But it’s all booked.  That’s that, right?

No.

Just because you have booked assistance, followed the process and done so 48 hours before your journey – no spontaneous train trips for me – doesn’t mean the assistance will be there.

Take my most recent train journey, a simple York to Leeds trip.  We turned up 20 minutes as required, we notified the information centre and were told to head to the platform.  The train arrived early as it terminated in York then turned around.  We waited on the platform.  We waited and we waited and five minutes before the train left we managed to speak to a member of staff on the train – bear in mind it’s station staff that do the assistance.  He thankfully had access to the ramp and we got on.

I made him aware that we were getting off in Leeds so that he’d be able to keep an eye out for station staff etc.  We pulled into Leeds, no sign of anyone, not even the train staff member.  My carer gets off and looks around – no one.  Absolutely no one to help us.

I am in my manual wheelchair and have limited mobility.  This gives us two options:

  • Option a) stay on the train until we reach a station that’s got staff on the platform that my carer can get off and get them to help
  • Option b) I get out manual chair, fight against crowd of people pushing to get on, stranger helps carer with chair then I fall off the train

The adrenaline of the situation helps me out with option b.

I complained about the lack of assistance to the appropriate people and got the following response:

London North Eastern Railway is very serious about offering our customers Assisted Travel. It forms part of our overall Disabled Peoples’ Protection Policy (DPPP) that helps us meet the needs of customers who are disabled or whose mobility is impaired. Our trains are for everyone and we’ll do everything we can to make each journey relaxing and enjoyable.

We’ve clearly let you down on this occasion and we’re sorry for any distress and inconvenience caused.

What we do to offer the best Assisted Travel experience
Our on-board and station teams have details of all customers who have reserved accommodation or arranged mobility assistance through Passenger Assist. 

…a lot of stuff about how they support passengers in the case of delays which was entirely irrelevant…

We are also getting a new Passenger Assistance in soon which should help to improve the booking process for both staff and passengers.

The problem was not the passenger system.  I was booked in as I should have been.  The problem was that no one turned up.  Either staff weren’t alerted to my journey or they just didn’t bother.

And you might well be thinking, yes but this is a one off, people get trains every day, you’ve been unlucky.

Well, no.  I have been forgotten about, left on trains and treated disgustingly time after time.  And if you don’t believe me, there’s plenty of other people out there who’ve had similar experiences.  Then there’s the stories about broken disabled toilets. Lack of appropriate space.  Staff who won’t move luggage out of the wheelchair space.  Broken lifts. Rail replacement services which aren’t accessible.  And so on and so on.

All of these things add up and mean that I have gone from being someone who was confident about, and regularly used, trains to someone who spends the entire journey wondering if I will actually be able to get off when we reach the destination.  And if I can’t get off then what is the next stop and how long will I be stuck on the train if I have to ride it till it terminates.  These are very real concerns.

The unpredictable service, the anxiety and the frustration all mean my travel is now significantly limited compared to my pre-wheelchair days.  It’s 2019, we should be able to expect better than this.

Wish me luck tomorrow…

Travelling with Ehlers Danlos Syndrome

Ok, as promised, I have written some tips for anyone who wants to travel with EDS or a different kind of chronic pain.  This is obviously not an exhaustive list and some of may not be helpful to you, please feel free to share your own tips and tricks below.

When I told people I was going to Cambodia, I got a lot of quizzical looks and “how the hell are you going to cope?”s.  Some of it is bloody minded stubbornness but a lot of it is planning and preparing.  Also, I know that the heat and adrenaline of the holiday will  help a bit.

WP_000229.jpg

Before

  • If you’re going on a tour, make sure you let them know about your condition, any concerns, health and safety risks and your limitations.  They need to know so they can plan accordingly.  They may also require a health check from your GP
  • Get insurance.  Everyone should travel with health insurance but if you have a chronic pain condition it is essential.  I use a UK company called Fish who are expensive but they are OK with me being broken.  I can also declare all my conditions online without having to ring anyone.  I’ve also used Age UK who are very similar to Fish (you don’t need to be a certain age to use them).
  • Get a super lightweight bag which can be carried in lots of different ways – wheels, rucksac and waist/shoulder strap which you can hack on if needs be using climbing clip things and straps from other bags.  My bag is an Osprey one which has wheels and a proper rucksack back complete with waist strap (this makes all the difference to me).  It also has a day pack which zips onto the main bag and is all incredibly light weight.  It also opens along the length unlike a rucksack where you open at the top so there is less rummaging around in your bag and accidentally dislocating your finger whilst you search for clean underwear.  It was expensive but mine was half price in the sales and is well worth the investment.
  • Make sure you have enough of your medication and pack it in your hand luggage.  You might need a drs letter depending on where you’re going and what meds you’re on.  Don’t change meds last minute – I did and it added to the stress!  Again, depending on the country and your meds, you may need a license to enter.  For Cambodia and Thailand, I needed documentation from the Thai and Cambodia government to take in morphine.  Allow plenty of time for sorting this out before you go.  The appropriate embassy is the best place to start for advice about this.
  • Pack slowly over a few weeks. Don’t try and cram it all in in one day, slowly put yourself a list together and slowly tick things off as you add them.  No point in starting a flare up before you’ve left the house.
  • On a similar note, plan rest before your holiday.  When I went to Cambodia, I set aside the two weekends before for rest and this made a huge difference to my pain and energy levels.
  • Contact the airline to let them know about any food restrictions and ask for wheelchair support.  This is amazing; you will get pushed from check in to plane then onto your next plane or to the taxi rank.  It may feel embarrassing or you may be reluctant to ask for help but why waste your precious energy and walking ability to go round an airport, save it for going round the coliseum etc.  Also having wheelchair assistance means you don’t have to carry your bag.  My shoulders and hands hurt less because I was able to put my bag on my knee (which is heavy because it’s filled with meds). At the airport, once I reached my airline I had help with my bags, I bypassed the queues and they bought the wheelchair to me instead of asking me to walk back to the assistance people.
  • Similarly you should contact the train station if you haven’t got anyone to help you get on and off the train. Having some visible sign of a disability seems to help as well… This year I was travelling with knee splints and a crutch (my other splints are mostly hidden) and I’ve had far more help. There have been idiots as well but the kindness of strangers has been great. I had people helping me to get my bags on and off the train, offering to put things in the overhead racks. The station staff let my friend through to help when I was struggling with my bag.

During

  • Take a blanket and a pillow, it will vastly improve your flight.  Yes long haul flights provide blankets, but they aren’t warm and they won’t help in the airports.  A blanket can be used to make airport seats more comfy, less cold etc.. A blanket also helps hotel beds become a bit more comfortable – lay it under the sheet or use it as a pillow.  If you’re travelling between places, use your blanket or bag as a footrest if you’re short, keeping feet and knees supported will help comfort and pain.
  • Wear comfortable clothing to fly in, including shoes you can slip off easily so when you’re on a cramped plane, you can kick them off and push them under the seat.
  • Take heatpacks, tubigrip, spare splints, whatever it is that helps a bit, it all adds up. Safety pins are very useful – things happen unexpectedly, splints break, clothes break and safety pins fix.
  • Take a bear, some things will be tough and you’ll need a hand to get yourself up and going again.
  • My tablet was really helpful.  I loaded it up with tv programmes, audio books, kindle books (as well as taking my actual kindle), I wrote my holiday diary on, took the odd photo on it.  If you need emergency info about something most places have WiFi somewhere.
  • And on that note, take a kindle, do not, I repeat do not, waste precious spoons (not heard of the spoon theory? Check it out) on carrying books around.
  • Readjust your expectations, you will not be able to go everywhere and do everything in your destination.  Pick and choose carefully.  One of my favourite days when I went to Bali was slowly walking to the art museum, slowly pottering around the beautiful gardens it was in, then coffee.  Followed by lunch in a local cafe with a seat by the street so I could soak up the sense of the place and people watch.  Then I headed back to the hotel via the market and had a nap whilst it rained outside.  It was a lovely relaxed day and I did what I wanted to do on my schedule and made use of the weather so I didn’t feel like I was missing out.  When I met up with the rest of my tour group, they had all got drenched in the downpour leaving them a bit miserable so I definitely got the best out of the day!
  • You know your pace but I find it helps to go with realistic expectations.  I know I can’t join in evening activities and daytime things so I choose day time because that’s more important to me.  This does mean I had more room service food and less time with the rest of my tour group but at the end of the day, my limits are different to a lot of peoples and I can’t keep up.  I have to choose what’s important to me.
  • Don’t rush round doing everything as soon as you get there – you will crash.  Instead, head to your hotel and relax, sleep, whatever for a while.
  • The issue of toilets…. The time in Cambodia where I was wearing a long skirt, had my crutch, had awful leg pain and had the toilet was a hole in the ground… Ah that was a challenge! Depending where you go toilets may include squatting toilets or literally a hole in the ground, think about how you can cope.
  • Postcards – if this is stressful or painful, don’t send them, or only send a few. You could email a photo instead.  Don’t feel obliged to ruin your holiday to keep friends and relatives happy.
  • I wore UV arm covers to put over my splints, bought from eBay.  When I’m in the UK I wear cotton or wool arm warmers, partly to hide the splints and partly because the velcro sticks to everything and irritates me.
  • If massages help. treat yourself, you’re on holiday after all!

After

  • Plan time to rest after your holiday.  If you work, book a few extra days off, you will benefit hugely from it.  Again, I book out a couple of rest weekends after I’ve been on a long trip, or, if it’s a short trip, just the one weekend.
  • If you’ve taken photos blow them up and put them near your bed or sofa so when pain gets you down  you can look at them or frame a piece of art you picked up.  Make sure there are reminders of the trip.

Final words of advice… enjoy yourself!

World Enough and Time Part 1

I’ve just come back from an amazing adventure to a tiny island off the North West of Scotland.  My purpose in this rather long journey on our public transport system was to attend ‘A week of art-making, writing, poetry and reflection on Tanera Mor‘.

It was a really enjoyable week, I cobbled together some words, made some books (this is currently my favourite thing ever – it’s a lot of fun) and got myself covered in paint.

In case you’ve never thought about it, it’s a long way from York to Ullapool (where I was staying before I got my lift to the pier).  The first train was York to Edinburgh then a train to Perth followed by a train through the Cairngorms to Inverness.  Here I stopped to visit Leakey’s (a great treasure trove of second hand books) before getting a bus to Strathpeffer and then finally getting a bus to Ullapool.

York to Edinburgh

Nostalgic autumn haze

Hangs over golden fields

 

The sun punctuates

Revealing dusty purple heather

 

The vast tall sky

Is squashed by heavy grey clouds

 

Edinburgh to Perth

A flask full of coffee – still warm

And a list of train stations

To wrap your tongue around;

Haymarket

Inverkeithing

Kirkcaldy

Markinch

And

Ladybank

 

Perth to Inverness

Suspended raindrops

Blur land and sky. Wispy clouds

Cling to highland rocks

 

Scottish Highlands

Purple and gold hills

White houses, green forest

Grey rivers cut through

A texture infused landscape;

Soft ferns, prickling pines

Hills dipping, overlapping

Rocks protrude and ruins

Pull you into memories