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.

When you’ve met one person with…

My dear and loyal readers, you know the drill by now, I’m an Aspie, I have various medical conditions and various disabilities, and I’m Queer as that rainbow that’s coming after the thunderstorm that’s currently raging outside your window. Here’s the thing though. Having a list of labels a mile long means I can quite happily confirm that old saying I’ve used as the title to this post. When you’ve met one person with x, you’ve met one person with x. What you often don’t here from the disabled community or the chronic illness community is something I’m going to say now, can we please apply this within our own community too?

Yes, I’m not going to deny that I can run off a list of traits for each of my disabilities and conditions that I have in common with others, I mean how else would they have been diagnosed in the first place? But here’s the thing. Just because we have things in common, doesn’t mean I perceive myself in the way you do, it doesn’t mean my various conditions interact in the same way yours do, and it doesn’t mean that I’m going to look at life in the same way you do. It also doesn’t mean that I’ve not got it as bad as you, or that I’m faking or lying about my conditions because you see me handling things differently from you. Has someone aimed a gun at me yet? No? Are we sure? Then I’ll continue.

I have Asperger’s. I find eye contact with people difficult. More so if I don’t know the person/people in question. But I took drama in school and continued it through from the age of four until I was in my mid twenties. I have learnt how to fake eye contact in order to be perceived as not having difficulties. It drains me. But please don’t assume this doesn’t mean I am not struggling with it.

My fibromyalgia and arthritis mean I’m constantly in pain. There is no relief. Some days the mere ability to move out of my bed is out of my reach. However, I don’t let that stop me from trying to do things. I have learnt to pace myself. If I can’t do something one day, I forgive myself, I pick it up, put it aside, and try to do it the next day. I count each thing I do manage as a blessing and each thing I don’t manage as something that can wait. I try to look at the positive side of things because I don’t want to be taken over by the pain. I will smile through the worst pain imaginable if it means that I can look at things more positively.

I will let my body decide what it can do and when. I let it decide if today is a wheelchair day, if it’s a walking day, or a combination of the both. I know when to use which optional medications and when not to. I know which ones I need to take daily and which ones I don’t. I’ve gotten better at knowing when I need to listen to my medical professionals and when I need to put my foot down and make them listen to me. My life is about choices that allow my adaptation to my conditions/disabilities to make it the most fulfilling it can be for me. And that means I know what is best for me. I will take advice but that doesn’t mean that I’m going to sit here and listen to all of it and not think for myself.

Right now I know the medical path that I want to follow. I know that I need to chase up my pain specialist and make her clinic realise they can’t keep pushing my appointments back. I need to sit down with her and tell her that I’ve spent the past few months researching my options. I don’t want to be on Gabapentin. The side effects listed could make my PTSD worse, they could exacerbate my anxiety and depression, and I’m not willing to take that risk. So whilst my GP has prescribed it, I won’t take it. Morphine may be great for friends of mine, but that’s not a path I’m ready to take yet. I have the genetic disposition for addiction. It took me 10 years to kick nicotine, and that was after I quit smoking. I’m talking 10 years to kick nicotine replacement therapy. So no, long term opiates are not an option I want to explore right now. Low Dose Naltrexone is. But I have to speak to my specialist about it because my GP can’t prescribe it. That’s how it works in the UK.

I have spent my entire life in and out of hospital and doctor’s appointments. I’ve been through more health professionals than I care to count, and considering I reach my 35th birthday in less than three months, and the doctors said that given the level of my heart problems at birth I’d never make my 5th birthday, I think I’m doing well. In the 80s a severe coarctation of the aorta and a heart bypass on a six week old baby weren’t a very high success rate. I was expected to need another one in my teens if I made it that far. Well I never needed that second bypass, and touch wood, I’m still here. I’m also the only one who’s lived my life. Who has lived through what I’ve lived through and seen what I have seen. I’m the only one who has the memories that cause my PTSD flashbacks, my anxiety and my depression. I’m the only one who knows how my Irlen tints help my SPD and Asperger’s.

I appreciate the advice of my peers more than you’ll ever know. But instead of telling me what you think I should do, whether you have one, multiple, or none of the same diagnoses as me, how about trying to explore options with me? Maybe we can talk about which options I’ve already tried, the ones that have worked and the ones that haven’t. Perhaps we can discuss why I don’t want to try the one you swear by, or why I’d like to research it more. And hey if you want to ask me what I think of something, I’m there for you too. Just please, please remember, that ultimately, the decision is mine. If I chose to do or not to do something, that’s my choice. But it’s a choice I’ve made because ultimately, I’m the one that knows me. None of us chose to have these disabilities/conditions/illnesses, but we can choose how we adapt to life with them.