Travelling with multiple disabilities and conditions – the essentials before I’ve even left home.

I’ve got a couple of trips coming up in the next month or so. Trips I’m more than excited for, but that are also anxiety inducing. They aren’t too far away, but they do involve planning. A lot of planning. I need to know exactly what I’m taking with me. I need to look at transport when I’m there, what I can do safely and on my own, the mobility aids I need with me, etc, and I try to do it whilst travelling light if I can. It’s made easier by the fact I travel to most places with my sister, because it means I’m not having to carry the suitcase, and we share a suitcase. But there’s always a lot to consider.

Firstly, how easy is public transport going to be for me? In the case of London, I can download a map of the accessible tube stations here but, these are still going to require me looking at the accessibility and seeing just how truly accessible they are each day. I’m planning on taking my wheelchair for the days my pain levels are higher. But that means I need to look at where I’m going to be able to get to. My fibromyalgia, arthritis, and chronic fatigue can affect my ability to self propel. It can stop my legs from functioning properly. I know this trip that my sister isn’t going to be with me every day. So each day is going to require a very detailed plan for travel. The buses in London, whilst cheaper than tube, don’t necessarily always have room for wheelchair users, and quite frankly, I hate travelling by bus with my chair. Some days are going to be walking stick days, and those are more easily done, but I still need to plan where I’m going.

I mentioned my sister not being able to be with me all the time, this means I need to have my anxiety emergency pack with me, ready to go when I venture out alone. This means I need my backpack with me at all times. In it I’ll have the following items:

• Laptop and charger
• Powerbank
• Inhalers
• Colouring books
• Phone and charger
• Pencil case with coloured pencils, pens, pencils, eraser and pencil sharpener
• Notebook
• Small plastic toys
• Fidget cube
• A small cuddly giraffe known as Jerry
• Chewing gum and sweets
• Nook and charger
• Book(s)
• Painkillers
• Paper bag
• Earphones
• Wallet
• Oyster Card
• A notecard that has my sister’s contact information on and details of why I may not be verbally responsive

Now some of that will slip into my handbag rather than my backpack, and I’m aware it looks like a lot, but actually it’s not when you consider most of it will fit in smaller folders/wallets inside my backpack, but I need to be prepared for anxiety attacks, PTSD flashbacks, Sensory Processding Disorder Overload, or shutdown. These are the things that can help calm me down, and/or are essential to me getting around.

I also need to look at the accessibility of the activities I intend to undertake and just how easily I’ll be able to do them. Like for instance on this London trip, one of the things I am doing involves this amazing British Library trip with Quest Retreats. So I’ve spent a good amount of time checking the accessibility of the library, making sure that I’m able to decide on the day if I need my chair or not, and I’ll spend a few hours with my sister going over transport routes from the place we’re staying so we have options available. Because of my Asperger’s I need to know in advance the routes I’m taking. It minimises stress. It also means I can have them saved in my phone. I’m less likely to forget them due to fibro fog and that helps to reduce stress as well.

Once I’ve thought through all of these things, and made sure I’ve got my medications packed, with an extra week’s supply, just in case, I then can look at the normal things, like clothes, and underwear, etc. My trips involve spreadsheets, print outs, folders with information in, checking repeatedly for available information on accessibility. I like to know what I’m facing. And I like to know that I’m not going to be disappointed when I get there, like I once was in York. The Shambles has a beautiful Harry Potter inspired shop that doesn’t have a fold-able ramp for disabled customers. The step would have been too high, even with my walking stick, and because of my hypermobility, would have meant a hip out of joint, so I missed out on something I desperately wanted to experience and had gotten excited over.

Being disabled doesn’t mean that I can’t travel. It just means I do things in a different way. I take into account the fatigue I’ll feel each day, the pain levels that may or may not cause me extra issues, the environments I’ll be in and the people I’ll be with. I pack things that are beneficial in making experiences enjoyable for me. I can’t wait for the trips I have coming up, and I can’t wait to share photos and blog posts. I’m going to be so excited about the British Library trip, and the possibility of meeting a friend or two I have yet to meet in person, that I’ll be bubbling over! I just need to prepare a little, okay, a lot more in advance than others may need to.

London, Easter 2016

A week away in London, a week of minor stressful moments, but overwhelmingly a week of reaffirming and making friendships, growing closer as sisters, and taking the time to see things normally missed in a long weekend away. This week has been amazing.

My body has mostly behaved in regards to pain levels, I randomly met a hero from my teen years, I saw people I love dearly, JDV and I learnt that squabbles just make us closer… we randomly met up with mutual old friends, we bumped into one of my oldest friends… It’s been a serendipitous trip. 
I’ll miss you London as we head back up North. I won’t miss the crowds and the chaos but I’ll look back on this trip with fondness and smile at the good that it has brought along the way. 

We visited St Paul’s Cathedral for Easter Evensong and in doing so paid tribute to Grandad. I said a few silent prayers for those who have helped me along the way through life. We’ve seen the cheaper side of so many Starbucks and walked over 50km. There have been overload moments but not a full meltdown. We saw an exhibition at The Tate Britain on Art and Alcohol that moved us deeply, walked along the Southbank and over Tower Bridge. It’s been a good break.

I’m looking forward to seeing my rodents again and sleeping in my own bed, but I’m sad to say goodbye to the memories of this week. We’ve had some extremely special moments not recorded on camera, but etched in our minds forever.

To those involved in those moments, you know who you are. Thank you for being a part of this journey we call life.

Travelling as an Aspie with other disabilities

I love travelling. I love being somewhere with different sights. In that I’m not that different from my NT (neurotypical) sister. But I have a checklist that relates to my Aspie nature as well as my Arthritis, my Irlen Syndrome, my PTSD, my Asthma, and my Endometriosis that others wouldn’t even think about.

If I’m travelling I need to look at the following:

• Am I going alone? If so can I avoid being in crowds for too long? If not, will I be able to find somewhere to escape to before the Sensory Overload kicks in?
• How much pain medication am I likely going to have to pack?
• Which pain meds do I bring?
• Can I access want I want to do with my walking stick or crutches?
• What are the potential triggers I face on this trip?
• Do I have enough antidepressants and anti anxiety meds?
• If I am going with someone can they recognise the signs of a meltdown and do they know how to handle it?
• What sort of air quality am I facing? Do I need both inhalers? Have I packed my asthma card in my wallet in case I get hospitalised?
• Do I need travel insurance? If so does it cover pre-existing conditions? How much of my holiday budget will that take up?
• What sort of lighting do the places I want to see have? And will my tints be enough? Should I pack my baseball cap too?

These are the things I look at before I even book my tickets. As an adult I have less meltdowns but I still stim. I’ve stopped caring what those stims look like to others. But there was a time I would have factored that into my list as well. 

You would think that cities are ruled out by that list. But they aren’t. Even somewhere busy like London has quieter spaces. The Starbucks I’m sat in as I write this is calm, lit softly, relaxing. I’m here with my sis but able to retreat into my quiet calm space after facing the crowds. And I know should I go into a meltdown, have an anxiety attack, a flashback, an asthma attack, or go into sensory overload, she knows what to do. 

I can enjoy travelling in my own way. But I will always be grateful to return to the comfort of my own home at the end of the trip.

Travel as a disabled/differently abled person

A friend of mine has tweeted tonight about not being allowed to get on a Virgin train because she hasn’t booked in advance.  Why did she need to book in advance for something most of us take for granted?  She and the friend she was travelling with were in their wheelchairs and going two stops up the line.  There were even disabled spaces vacant.  So let me get this straight, all people in wheelchairs need to book 24 hours in advance before using public transport that others can pretty much get a ticket for 5 minutes in advance.  They need to know exactly when they plan to travel and how.  Even people in wheelchairs need to change travel plans last minute.

I tweeted Virgin and asked them about this, the answer I got:

“You have to book in advance for a wheelchair space, however if you go to the station they will be able to assist you ^RS”

This is not cool. Period. Personally I travel most trips over an hour with a walking stick because of my knees.  The pain gets too much and I just can’t deal with the constantly having my knees bent for that long.  But here’s the difference, they would have let me on the train.  My friend and her friend however, were refused service.

The difference between the way countries treat those who are not able bodied is astounding.  Over the past few years, I’ve made several trips to the US to visit my other half.  Every time I’ve had wheelchair assistance at the airports because after long haul flights the idea of attempting to walk from one end of a large airport to the other is laughable.  People, even passers by who don’t work for the airports, automatically move to let anyone in a wheelchair or with a walking stick past.

Staff on the coach service I usually use to get me to and from the airport assist me in and out of the coach when I am in the States.  They make sure to take my luggage and load it for me and get it off for me and make sure I can manoeuvre it on my own.

At Dragon*Con, which we’ve been to for the past two years and which is held in Atlanta, the convention staff go out of their way to ensure disability needs are met and that anyone with a differing ability is treated as a human being.  Admittedly, most of the time, the UK cons I attend are the same but with one difference.  At the UK cons I have to warn them in advance I’m coming.  At Dragon*Con I just have to go to the disability services on arrival and they put a sticker on my card that states what it is I require to ensure I’m comfortable.

When using my stick in the UK, I’m subjected to stares from people who think it’s odd that at my age I’m using one, I get people laughing and taunting.  In the States, this doesn’t happen.  You get the occasional idiot who ignores the walking stick as they barge past, but as a whole, my experiences are generally good.  People within the customer service industry in America seriously go out of their way to help people, and whilst some buildings could definitely be more accessible, there’s an attitude of help rather than hindrance.

As people who rely on public transport or the kindness of friends and family to get from a to b, we shouldn’t be told that we can’t travel, we shouldn’t be pushed aside in favour of able bodied people.  A wheelchair does not mean we aren’t capable of living a good and fulfilled life, but, according to the UK transport system and the attitudes of the British public, we do nothing but scrounge of the government.  Tell that to me once you’ve found out I work a 40 hour week, and tell that to my friend in her wheelchair, who would love nothing more than the ability to work a full time job and who has a mind as sharp, if not sharper than most, but who is, in effect limited to what she can do because of the limitations of her body.

Disabled is a word that says in the minds of many, unable, scrounger, living off benefits.  To those people, I say heaven forbid you have an accident that means you can’t work any longer.  You too would be living off the government, and what would you say then?  Would you be as quick to judge the rest of us?  Travel and dignity are rights for everyone, not privileges, and it seems that Virgin Trains have forgotten this fact.