Ehlers-Danlos Tees

By now you know that Pokemon Go is a game designed to have us walking around. This is a great concept that gets people active and out of their houses, but what if you can’t walk?

A little bit of backstory here: I have Ehlers Danlos Syndrome, which causes a lot of dislocations (especially when walking) and essentially means that walking long distances is not possible for me. I typically use a wheelchair when I’m going grocery shopping, but I can’t propel it on cement because the hills and extra resistance causes injury to my shoulders. This makes Pokemon Go a constant struggle to me, but I’ve picked up some quick tips.

Catch Them All! The game is designed to have you walk around your community or town to find Pokemon located there.

Go for a Sunday afternoon drive. The best (and most obvious way) to catch Pokemon without walking is by driving. Of course, it should go without saying, DO NOT POKEMON GO AND DRIVE. So if you have a partner or friend willing to feed your need to catch them all, then having someone drive (slowly) around a community is your best way to snag some Pokemon. Otherwise, even just driving around like normal can sometimes yield results.

Wheel around with the help of a friend. If you have access to a wheelchair but struggle to push it outside (like me) the other option is to invite some friendly people to play with you, and ask that one of them push you. This can be better than the driving, cause your helper can also play with you and therefore might be more inclined to help you out.

Hop on a bus going nowhere. If driving or wheeling isn’t an option because of lack of help, then you could utilize public transportation. Catching pokemon on a faster moving vehicle is a bit more tricky, but not impossible, and you can even get some Pokestops if you’re quick about it. 

Become a Pokemon magnet. With the help of a Lure, you can turn any Pokestop into a Pokemon magnet, collecting all the creatures nearby. In my experience, this is the best way to get the Pokemon to come to you, as most Pokestops are located in an area where there are plenty of little buggers you can catch. However, you usually don’t get lures until you are further leveled up. Of course, you can always buy some at the shop. If you’re stuck at your house, however, you can use incense for the same effect, and you start off the game with 2 incenses that last 30m each.

Walk with breaks. If you’re like me, you probably already know this, it’s the oldest trick in the book. If you’re capable of walking short distances, with breaks, then chose an area with lots of benches or areas to sit down, and rest every time you reach a bench. This is another great time to use incense, and the plus side is that you might bump into other people playing too! I’d of course, caution that you only do this if it is not going to have long-term, negative effects on your body. 

Hit The Mall. I’ve noticed local malls and stores are ideal places to hunt for pokemon, especially if your mall has pokestops and gyms in it. Additionally, some stores/malls have accessibility like public wheelchairs, or motor chairs which can be of great use if you find walking difficult! If a pokestop is nearby, using a lure would be even more effective in catching your favorite pokemon. 

Find Those Pokestops. I’ve recently learned that **intersecting pokestops are referred to as a “farm” that are more likely to increase the rarity of pokemon that appear there, double the XP you receive when catching said pokemon, and are often hotspots for players to hang out. Find one of these intersecting Pokestops and chill out there. You’ll know you’ve found the right places because there will most likely be a hoard of other players hanging out in the same spot. 

Hatch Them All! Hatching pokemon requires that you walk for a certain length of time, the game considers the speed at which you are going in order to ensure that you are walking.*

Driving is always an option. Even though the game considers your speed, there are still times that cars go slowly. So if you ever find yourself in the passenger side of a car as it goes through a parking lots or community, be sure to keep your game open so it thinks you’re walking. It might be a small addition to your total mileage, but a little bit adds up eventually.

Break out your wheels. This is an excellent opportunity to use that wheelchair we talked about. Same concept, if someone is pushing you, the app will still assume you are walking as your GPS picks up on the slow progression of movement. If you’re just using your chair on a routine wheel around the store, then just place your phone in a bag or pocket, with the app open (This is a great time to use Battery Saver Mode) and it will add some mileage to you as well.

Remember That Mall? As always, go on over to your customer service center in your local mall or check out the available wheels at Wal-Mart. There should be some public wheelchairs available at one of those places and you can wheel around the store, moving your GPS, and hatching those eggs.

Never Turn The Game Off. We might not think about it much, but just walking around the house can help build up some egg-hatching abilities. So another good bet is to keep the game turned on and your phone in your pocket all day. Turn off your wifi, which should make your GPS tracking less accurate, so a small movement around the house may be considered as a longer walk. If you’re worried about battery life, check out the app’s battery saver mode.

How Are Your Legs Feeling? I know legs can be a little bit shotty and I, personally, can’t ride a bike for much longer than I can walk, but if bike riding is one of the things you find physically possible then I’d definitely recommend riding your bike around for a bit to get some “steps” in for your hatching eggs.

Troubleshooting.

I have unstable hands and throwing Pokeballs is difficult for me. -You could try turning of AR, which makes it easier to catch the Pokemon on your phone as it keeps the screen more steady. Other than that, asking someone to go out with you and help you throw to catch them could help.

The music/sound effects trigger my anxiety/misophonia. -I loathe having the music running, but luckily it’s easy enough to turn off those things in the settings menu.

AR makes me nauseas/motion sick/triggers my migraines or other condition. -You can turn off AR for gym battles and catching Pokemon, which should help with these issues.

I’m not progressing as quickly at this game as my able-bodied friends. -Remember that everybody goes at their own pace and it’s okay if your pace is a little slower than theirs. Keep your chin up and play when you can, rest when you can’t. You are doing so much just keeping yourself alive.

Let me know if you’d like me to add anymore tips to this list! I hope you have fun playing, and stay safe! 

*There is some debate on what speed the app no longer thinks you are walking, some say 20mph, 15mph, or even 12mph. I’d say 15mph is a reasonable assumption, but I drive a little under 20mph in my community and the app has hatched some eggs that way. Just drive as slowly as possible and you should be good.

Do not be ashamed when you aren’t capable of doing the same things as everybody else. You cannot control it.

Do not be ashamed of the days you can’t get out of bed. You cannot control it

Do not be ashamed of having to use an aid. You cannot control it.

Do not be ashamed of the amount of work you can’t do. Celebrate the work that you can. Even if it’s just breathing. You cannot control that.

Do not be ashamed of having to miss or cancel plans. You cannot control it.

Do not be ashamed of having to use handicapped parking a or the elevator. They are there for a reason. You cannot control that.

Do not be ashamed of forgetting things often even if they are important. You cannot control that.

Do not be ashamed of your body weight. The world has a fucked up conception of what beauty is. You cannot control that.

Do not be ashamed when you are sad about your illness. It sucks and you cannot control that.

Anne Thériault (via beatacaroline)

What is Spoonie Film Club?

Spoonie film club is a weekly virtual get together for spoonies, where we watch movies and tv shows together online through rab.it.  Some of the movies feature complex representations of illness and disability, and some movies and are simply fun to watch with new spoonie friends because magic and escapism. The aim in general is to connect with other spoonies, make friends, support each other, and also sometimes find movies or tv shows that enable us to think through our illness and struggles and triumphs with one another. There is also a chat bar alongside the view screen so that we can message each other while we watch.

Spoonie Film Club will meet Thursday evenings from 7:30 to 9:30ish. (Standard Eastern Time)

Who is welcome in Spoonie Film Club?

Any and all spoonies! 

Rab.it can only hold 15 people in each chat room, but if spoonie film club grows beyond that, we can expand to have multiple chat rooms with multiple hosts. Check Updates for details.

How do I join Spoonie Film Club?

Go to rab.it, create a login, add me to your friend list, and join us in my virtual living room on Thursday evenings. You can find me by searching for my username: molotovcupcakesays. 

The living room link changes each time, so you might have to check the updates each week.  I’ll open our living room and update our current online living room link by 7pm on Thursday nights, and start the movie or tv show at 7:30.

What kinds of movies will we watch in Spoonie Film club?

Movies/shows of any genre that are either directly related to chronic illness or disability or tangentially related but help us to make connections and cope with our illnesses & support each other. Or maybe just things we like while we hang and get to know each other.

Spoonie Film Club WILL NOT:

-show movies where chronically ill or disabled characters are used solely as a device for the growth, development and enlightenment of a main, able-bodied or neurotypical character

-feature movies where the spoonie or disabled character commits suicide (with the subtext that without our health our lives are not worth living)

-feature movies in which a spoonie or disabled character is magically cured (thereby indicating that our lives are only worth writing about if there is a happy ending in which we are no longer ill)

-feature movies that involve a plot twist wherein we discover the character was never ill in the first place

- feature tragic tear jerker movies about terminal illness in which the character tragically dies at the end.

Spoonie Film Club will:

- feature complex spoonie and/or disabled characters and complicate trite, overused and cliche narratives that reduce ill and disabled characters to life lessons for able bodied or neurotypical characters

- feautre movies show what it’s like to go on living, without ever magically getting better

- validate that chronically ill and disabled people have lives worth writing about, and lives worth living overall, because so many books and movies have the subtext that they aren’t.

- sometimes we’ll just watch movies or tv shows we like that don’t do any of the shitty stuff listed above.

How do I find updates for film nights and schedules and stuff?

Updates will be posted here. Updated link for current living room will be posted by 7pm on Thursday nights. You can also search the hastag #spoonie film club or #spoonie movie night for other related posts & discussions.

Tentative Schedule for Viewings 

I am gonna go ahead a pick a few things to get us started, and then I’m hoping we can make decisions together or take turns choosing future movies/shows. Without further ado, here is what I propose for our starting out schedule:

Thursday March 3rd: Princess Mononoke 

Thursday March 10th: Love & Other Drugs 

Thursday March 17th: Ondine 

Thursday March 24th: ??? You pick.

Thursday March 31st: Choose a thing!

Ideas for future Thursdays: Jessica Jones, Xmen, Harry Potter, Star Trek (tng)… and various other things of your choosing.  Schedule updates will be posted here. 

Do you have ideas on what we should watch? Reblog & add your ideas (:

(Also thank you @painandcats​ for making the beautiful banner above!!!)

Reblog and get involved!  This’ll be cool!  Tag other spoonies!

Rare Disease Day is February 29th! Time to get your tee! Help raise awareness for all rare diseases with this shirt! Multiple colors and styles! 

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