[Geeking With Spoons] Spoonie Convention Guide: Part 3

Travelling can be stressful at the best of times, let alone when you’re also disabled and in chronic pain. Whilst it’s possible to get things like assisted travel, these things only go so far towards actually helping. 
So what are the essential things to remember when travelling?

1) Assisted travel. It sucks and the service leaves much to be desired but we need it.

Someone essentially helps you onto the train. That’s pretty much where assisted travel begins and ends. It’s not very accommodating and they do the bare minimum and often not very well at that.

For anxious travellers it can be difficult. Some people might struggle (I’m one of them) with the direct communication and, in my experience, the quality of service can very much depend on who you get and where you are. They tend to be quite accommodating in London stations (I tend to always land in Paddington), but in smaller stations (such as Cheltenham) the service can be lacking. Which is frustrating since it’s so essential: without assistance it’s pretty impossible to get a wheelchair on a train (the ramps are staff-access only) and even if it was possible, there’s the other passengers and the limited time available to consider. And all of this squeezed into the tiny infinitesimal minutes between the platform being announced, getting there, and then the train pulling out. It’s a mess, even with assistance.

So assisted travel isn’t something we can change and we need it but hey, the rest of the journey doesn’t have to be a nightmare.

2) Food and water!

Do yourself a favour and don’t rely on train station food. Not only is it expensive but it might not fit in with any dietary requirements you may have. I know lots of spoonies have dietary needs (me!) and you will not find them met in most restaurants or food places, let alone a train station café or shop. It might be annoying to prep the food, but you will thank Past You. Make sure to plan meals (or at least snacks) for each meal slot you’ll be traveling for. Having enough water is important, too, since there’s nothing worse than being dehydrated whilst traveling.

3) Medicate!

Traveling can trigger and exaggerate a lot of pain and discomfort and whilst pain meds might not entirely fix that (you’re not likely to start really feeling better until you’re done with the infernal traveling), it’s a start and it’s essential. If you have regular times when you take your medication, it might be a good plan to adjust those times around when you’re travelling, so you can medicate accordingly.

4) Travel aids/therapy aids

Anything from neck support pillows to lumbar pillows – if you think it might help, take it with you. You might feel a little self-conscious on the train (because oh but people do love to stare) but weigh up how useful they’ll be for you and decide if it’s worth carrying the extra bulk. I personally can’t travel without some kind of pillow to lean on, otherwise my shoulders and arms hurt even more.

5) Entertainment!

Don’t underestimate now much you need to keep yourself distracted as you’re travelling. Not only is there the pain to contend with, but there’s the stress and anxiety of traveling. I always have music when I travel and I always read. You might like to watch something on a tablet or laptop (especially if you have WiFi) or maybe arrange to chat with friends online whilst you’re traveling. Or you could always hope that there’s something interesting to live tweet if that will keep you more entertained!

6) Organisation!

Make sure you know what you’re doing, where you’re going and when. Each train or plane or taxi, è every connection or change. You need to know what you’re doing. It’s hard enough to travel, without then needing the presence of mind to look at train tickets and check times and figure all kinds of other stuff out. Ideally you need to know what every step of your journey entails, from the train seat you’ve got to the times of arrival and the prospective prices of taxis. All these things can be found easily online and, instead of forcing yourself to remember them, you should write them somewhere on your phone or tablet, or even in a planner that you keep with you. This will mean that you’re always in control, even if you don’t feel it whilst travelling!

[Geeking With Spoons] Spoonie Convention Guide: Part 2

Once the lists are done, most of what remains in that area is to work through them. Easier said than done when there are ~8 different lists to work through and tick off each item. Sure, some things that can be ticked off are as simple as putting each thing in a bag and crossing it happily off. Others (such as the chores list and food prep list) are more complicated and likely won’t all be completed until the last minute (in that there will be some things to do on Wednesday night (e.g. food for the train), which is basically last minute – but which can be prepared for in advance all the same!). The same can be said for packing the actual suitcase and bags (especially the travel bag).
So that leaves a week(ish). The con is on Thursday, travelling at around midday, so even the last bits and pieces can be slipped into the travel bag on the morning. Most of what remains to do between now and say, Wednesday, is rest as much as possible. Okay, so that’s what I should do and that’s what I would advise any spoonie to do. But then not every spoonie is a bundle of ADHD and OCD energy who absolutely has no idea to stay still and will get very, very stressed by the notion of doing just that. Instead, I’ll do my best in the coming days to control my time and to balance my energy between doing the things that need doing, and making sure I don’t do too much. It’s … a very shaky balance, I’ll admit.
So. Here’s how the now-until-Wednesday-night will actually go.
I’ll work through the lists slowly (trying to get any chores out of the way first, so as to better be able to organise at least some of my energy) as well as planning the convention itself. It’s helpful that there’s a schedule online so I can at least try to figure out where I’ll be, doing what and when, but also so I can make sure to at least try and pace myself. This is another thing I’m pretty terrible at. I honestly don’t know how to pace myself, even though I see other spoonies doing it (or at least talking about it) all the time. Maybe a lot of that comes from the neurodiversity I have going on, but hey, maybe I’ll still figure it out one day.
So in the days running up to a con, what things do I absolutely need to make sure I do?
1) Keep the routine as normal as possible 
Not all spoonies need this, but I certainly do. Being neurodiverse the way I am, routine is oh-so very important to me. I tend to thrive with a routine and fall apart without one. My routine is quite strict, from the time I get up to when I go to bed. Meals and work time and even downtime is scheduled, however loosely. It’s hard doing things this way, being a spoonie and always essentially trying to do so much–but them’s the rules and I don’t make ’em. Starting today, however, Chez Cristea has officially flipped over to “Holiday Mode”, which essentially means doing different things to working during the same, and a looser schedule around what gets done, when. Since Nine Worlds begins on the Thursday and there’s only the Monday, Tuesday and Wednesday to deal with, which means there was no real point in not declaring “Holiday Mode” a few days early: it gives me the time to at least try and pace, or, in the very least, not go so hard at it when trying to prep.
2) Not think too much about being at the convention
Maybe this is just me, but for the most part, my anxiety absolutely can’t handle me thinking about being there. Last year I surpassed by own expectations by going to a few panels and actually leaving the room. This might sound like a pretty low bar for a convention, but hey, I’ve learned to go easy on myself and not to expect more from myself than I’m able to give. I am absurdly socially anxious, don’t know how to “people”, and have a lot of issues about being with and even around people. So, I don’t think about the being there, until I’m actually there. Planning the schedule notwithstanding, of course.
But this also stands in regards to not worrying about being at the con in a sense of activities and pain levels and additional fatigue brought on by travel and all the related things of actually being disabled/sick whilst trying to do something. There’s not a lot of point thinking about the stress and the additional fatigue and pain that is usually triggered by actually doing something, when that something isn’t yet being done. So, until the bags touch down in the hotel room on Thursday, I have no intention of thinking about being at the con, or what I will or won’t be able to do. It saves a lot of spoons, that way!
3) Prepare for amped up pain levels
Whether I do or don’t take it easy before travelling on Thursday, I absolutely run the risk of a mini-flare up of symptoms, brought on by the background anxiety of the upcoming stress and fuss and everything. Not thinking about being at the con doesn’t mean that my subconscious doesn’t worry about it. So I need to be aware that the pain might be worse between now and Thursday, and I need to try and plan for that, so that it doesn’t get in the way and make the planning and preparation even harder. I need to be ready for anxiety and insomnia on Wednesday night. It’s pretty difficult to be ready for anxiety, since all the prep in the world won’t really make a difference, but at least if I’m aware that it may be a thing, it won’t take me by surprise. The potential insomnia is easier to prepare for, though, so that’s at least a plus.
4) Don’t skip out on any single thing on the list and spread them all out in advance
The list is there for a reason: it’s a little gift from Past Leo to Future Leo. It will make everything easier, even if it seems arbitrary and dull and too detailed. It isn’t. It is all essential and it’s boring and I’ll be grateful for not having to think later, when I’m stressed and anxious and hurting (more than usual). If I leave everything until the last minute, I’ll be flaring before I even know it and already I’m at a disadvantage. Bad idea. The lists are your friend, Leo.

[Geeking With Spoons] Spoonie Convention Guide: Part 1

geeking with spoons
For most people (those whose lives aren’t governed, one way or another, by spoons), the planning involved in convention prep is relatively minor (especially if you’re not traveling super far or cosplaying, etc – and even then, it’s not totally exhausting). Perhaps you’ll browse the con schedule and decide which events and/or panels you want to attend, make lists so as not to forget any essentials (toothpaste! pants! tickets!) and maybe even buy mini pots to reduce the bulk of shampoo and shower gel, etc. I need to do all those things, too, but they’re not what comes first. Not even close.
planning noteThe very first thing I, as a spoonie, need to do when preparing for a convention, is make a list of everything I need to plan. That’s right: before I can even start with the prep, I need to prep my prep. If I don’t, chances are that I’ll forget something. Whilst that amorphous something might be relatively minor–such as a phone charger, which can be easily purchased near to the con, or a forgotten toiletry that can also be casually sourced–it might also wind up being prescription painkillers which absolutely cannot be purchased from the nearest Boots, or even something as essential as a wrist support or crutches. (Trust me: rushing out the house to get into the taxi, in my wheelchair and laden with bags, does not lend itself to remembering to shrink down crutches and stuff them into a bag–and you never know when the additional walking aid might be needed to cross from bed to bathroom in a hotel.)
So there are three reasons that I need to plan my prep. One is that there is a lot of it. The second is that I have so much going on mentally/physically everyday, that I’m liable to forget something. My type of ADD makes me hyperfocused and my OCD can make me need to do some things right there and then or in a certain order, otherwise… Well, the only otherwise is that it feels very, very wrong and bad and not good. Not all spoonies have these issues to deal with,  but they more than likely have the brain fog and forgetfulness, or just lack of spoons with which to get everything done. This brings us to the third. Energy. When you’re a spoonie, everything takes energy and that means planning and preparing and thinking. Without pre planning, there’s the risk that I’ll start flaring or I’ll be low on spoons out of nowhere, and suddenly those tiny tasks become mountains.
I’m not generally very good at planning. I like to think I am, but I find sitting still and planning pretty difficult, compared with just doing the thing. planning note 2I’ll be the one saying “oh, we can pack in the morning! We’ll have time!”. This was true, once. Before I became disabled and before everything that used to make sense, no longer did. Before brain fog and constant fatigue and pain. Now, we absolutely do not have the time to pack last minute.
So it comes down to lists! Lists of things that need doing, lists of things that need packing, and lists of miscellaneous tasks that need attending to one way or another. Micro lists are the way to go. Anything else and my energy gets drained just thinking about everything that needs doing, and I will end up half-assing everything because I’m already so done. 
So the first list is going to look something like this:
  • Write chores list
  • Write packing list
  • Write convention food plan, and subsequent food prep list required
  • Write travel bag list
  • Write list of medication and therapy aids required (supports or ear plugs, etc)
  • Plan food for Wednesday night, Thursday morning and Monday afternoon/evening
  • Write spending budget for convention
  • Pencil in convention schedule, leaving space for meals and rest 
It’s basically a list of all the lists that need writing, or things that need planning. This way, I can work through doing one thing at a time, or, if I get tired of one line of thought, can easily skip to start on another. By not leaving anything left unplanned, I’m not going to be anxious about packing and forgetting something or being too tired to cook.
nine worlds with spoonsThis system is a result of always having forgotten something before, or having forgotten to take into account something that I’m then kicking myself for after. I don’t want to spend money on usually gross takeout food when I get home and need rest, just because I neglected to anticipate how tired and broken I would be after a convention and the stress and travel involved. It’s always something I know, on an unconscious level, but I tend to get swept up by things and forget that I’m incapable of doing all this stuff with no payback. Chronic illness sucks and it doesn’t go away, but you’d be surprised how easily the things you’ve known for years can still get the jump on you. The OCD and ADD don’t help with that, since I am always doing more than I probably should/safely can, but hey, that’s another topic altogether.
So stage one is done (or it will be, once I write these lists down on paper in a way that feels tangible and I can interact with), and close behind that, is actually working through the lists and writing down everything that’s required. It already feels like so much to do, and that sucks, but this is literally what any expedition feels like when you’re disabled and chronically ill.
Here’s hoping that the con will be worth the stress and spoons, exacerbated pain and, finally, the inevitable payback!