2015 in blog posts

WordPress sent me an email with stats etc about how my blog has fared in 2015.  To be honest I wasn’t especially interested.  My hope is that by sharing my experiences and my words someone else will be helped.

This means that my top 5 blog posts of 2015 are somewhat different to WordPress’s.  Here are mine in no particular order:

  1. Travelling with EDS
  2. How to be a carer part 1 and part 2
  3. EDS Awareness month: An open letter
  4. Chronic Pain Cookbook (free to download)
  5. Do something small and do it most days

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.

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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 2

In my last post, I included poems which took me from York to Ullapool.  Because of tide times and such things I stayed in Ullapool in The Ceilidh Place (part bookshop, part cafe, part hotel, part hostel) for a night.  This also turned out to be a great place to sit and read and avoid the rain.

By the way, if you’re travelling round Scotland on public transport I highly recommend Traveline Scotland (also available in app form).

Ullapool

The 3am wind

Clatters the rain beaten glass

Here in ullapool

 

In The Ceilidh Place

Sodden shoes squeak loudly over

Gaelic music and hushed voices

Strangers share stories with acquaintances

As if the best of friends

In this passing place

 

On the boat to Tanera Mor

Isabella leaves

A trail of white foam as she

Heads for tidemarked land

 

Fatherly

A stranger wishes

Me goodnight in the same way

He would his children

What makes you come alive?

At a recent appointment with my psych nurse we spent a while talking about rubbish things which have probably contributed to the recurrent depression, self harm and anorexia.  Needless to say, the mood in the room was heavy.  Then she turned the conversation and we started to talk about things I enjoy.  After a while, she stopped and looked thoughtful and then told me how she had seen me come alive as I started to talk about photography, travel etc and how she’d really felt the atmosphere change in the room.

A few days after, there was a post on twitter which said find what makes you come alive and do more of it (or something to that effect).

It’s something I’m really trying to keep hold of.

What makes me come alive and how am I planning on doing more of it?

Photography – I’ve started following a couple of photography blogs for inspiration; I’ve made a note of techniques I want to try out with my diana mini; I’m hoping to get to the lomography store whilst I’m in London this week to pick up some interesting film; I’ve got my eye on a new lens for my DSLR and it’s only £150 so is affordable-ish.

Books – keep reading! I’ve got a good routine at work now where I read on my lunch break instead of sitting at my computer.  I also think it would be nice to set aside a couple of pounds a week to go to a cafe with a book.

Travel – I can’t fly at the moment (I have been forbidden by the psych nurse on account of my weight which is a good reason for gaining some weight and I need to keep reminding myself of that) but that doesn’t mean I can’t make plans.  I have planned in a bit of detail an independent trip to Norway.  I’ve also decided on a small group tour in Cambodia and started to look for somewhere to stay in Lille.  In the meantime, my travel is restricted to trains but that’s ok – I’m off to Scotland in August for a writing, photography, art week away on a remote island.  I’m also staying at a hotel which is in a bookshop on the way and way back!

Learning – over the last couple of weeks I’ve been to quite a few workshops and lectures as part of York Festival of Ideas – Writing Recklessly, Randomness and Chaos in Art, The Rise of the Female Diplomat, Listening to the City (a writing workshop), Frogs Don’t Need to Get Hot (about social support and mental health) and Moving Beyond Boundaries (about teaching women’s history in schools).  I’ve really enjoyed these and have (reluctantly) acknowledged that I’ve got so much more out of them because I have been eating more and have gained a little weight.  I’m also trying to get back into my Future Learn courses.  Last night when insomnia struck, I returned to looking at the MA in Women’s Studies that I want to do but I know, sensibly, that I can’t do right now.  I also had a look at some of the open university modules and think that might be an option before the MA.  But before that I need to get healthier.  So I’m currently waiting for the centre for lifelong learning brochure to come out and hopefully I’ll book myself onto a short course or a weekend course which I think will be more achievable.

Dinosaurs – dinos rock!  They are amazing and I feel like me and dinosaurs have been a bit distant of late so I’m hoping to reconnect with them and their awesomeness!  This has most recently included a trip to the natural history museum in Brussels where I bought a hoodie with a dino on it (I’m that cool!).  I also have the bones of a poem about a diplodocus which I need to go back to.