Cool Things | Jossea K. Rilea

What does your Thing look like?

"Things" have been created that have Lyme Disease, Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, POTS, SVT, Syncope, Dysautonomia, Rheumatoid Arthritis, Glaucoma, Celiac Disease, Fibromyalgia, Allergies, Cervical Facet Syndrome, Multiple Chemical Sensitivity, Migraine, Pigment Dispersion Syndrome, Heart Disease, Meniere's Disease, ADHD, depression and more! How cool is that? Let's keep the awesomeness going...

My Thing has POTS, which is a short name for Postural Orthostatic Tachycardia Syndrome, which affects my heart and makes me feel really sick somedays. I call it my Love Bug.

I call this Thing CYSTER. I am very cyst prone and have had many surgeries to remove cysts from my body. I had a dermoid cyst in my ovary and had to get my ovary and fallopian cyst removed. I also had a cyst in my arm, on my head, on my fingers and toes. They don't usually hurt, though, which is a good thing.

My Thing has pigment dispersion syndrome, which is this thing in my eye that makes the color part (the iris) flake off which causes the pressure inside my eye to go up which can cause glaucoma, which is a disease that can make me go blind. I take medicine to lower my eye pressure and have to take that for the rest of my life. Despite this, I am grateful I can still see, so this Thing is called EYE-C (ICY for short). I also have this thing in my eye called Asteroid hyalosis (yep, just like real asteroids in space). There are about 400 of them floating around in the white part of my eye. Sometimes, if the light is shining from behind, I can see them and each one refracts light in weird directions which makes it hard for me to look at flashing lights or bright headlights when driving.

This is my Thing called vertigo (which I nicknamed Dizzy Lizzy). It's basically the worst feeling I've ever felt, like the whole world is spinning. I get vertigo because I have this Thing called Meniere's Disease, which affects my inner ear. It is not fun but I now understand what is happening when it happens so I don't panic as much any more.

My Thing has depression. Sometimes when I am going through a hard time, my brain feels like a blob of nothingness and when I talk to others, I'm unable to fully process what is being said and the world just looks like a big blob. So that's why I called my Thing BLOBBY.

I have multiple chemical sensitivity so sometimes I feel like I live in a bubble, afraid of coming into contact with things that might make me feel sick.

I have social anxiety and sometimes like to blend in and be invisible.

Hi - My name is Zemee and I hate the cold weather so sometimes like to sit right on top of the heater. Well, this one time, I guess I got a little too comfortable and I got a really bad burn on the pads of my foot. So, now I've got this Thing, which really makes it hard to leap up and catch bugs but that's okay, I also have a nice Human who takes care of me and my Thing.

This is my Thing for this thing I have called ADHD which I named FOCUS. Sometimes I talk too much so that is why there is something covering its mouth, which I wish would help remind me to pause so others can talk, too. I also can never sit still so, this is why my thing has weights on its legs, to remind me to ground my energy and try to stay present in the moment. I drew My Thing not as it is but how I wish it would be. I wish I could remember things that could help my Thing but I usually forget because I have a terrible memory.

By Amanda C, 34 years from EDS-Foundation Netherlands The face has a mask because we often put on a mask because of incomprehension in society. The heads in the back right represent society. The question marks because many of them often do not get the ball but do judge, which can be seen in the expression of the heads. The face with a mask has, next to the question mark, an exclamation mark that says together: "It is difficult to understand, but just respect me. Respect what I indicate and have no judgment about it."

My invisible illness as illustrated by me. All swollen and achy and feeling like a monster. I am obviously not an artist but I believe this adequately portrays how I feel... especially on a stupid prednisone burst.

So, I know that this is TOTALLY different than what I usually post, but this is my #icz. It represents my syncope. Syncope is a condition when your heart rate and blood pressure drop very suddenly, causing you to faint. I also have a SVT, too, which causes my heart to race without exercise, etc. I chose a bird to represent them because birds get tired from flying a lot, and I get tired from doing a lot of activity. Also, birds might get dizzy from the heights that they fly to, and dizziness is a big part of my Syncope. It also represents the paleness in my face from the blood which pools in my feet/legs due to my low BP. I drew the heart on my bird big because that is the biggest thing that effects me. Thanks!

This creature is inspired by the beauty, fragility and speed of the hummingbird as well as the digestion, elasticity, and temperature regulation of the snake. As many individuals with Ehlers-Danlos Syndrome (EDS), I also have Postural Orthostatic Tachycardia Syndrome (POTS). POTS is an autonomic nervous system dysfunction that upon positional changes causes my heart rate to increase from approximately 90bbm to 130+ bbm as my blood pressure drops to 90/60 (a health individuals heart beats at approximately 70bbm). My heart currently receives rest by laying down flat, hydration, salt, the help of beta blockers and medicine used to treat orthostatic hypotension. The hummingbird gracefully handles heart rates of up to 1,263 bpm and is able to reduce its heart rate to 50bbp to conserve energy. Another thing we have in common is the inability to stand on our feet. Sadly for the hummingbird, his feet are too small to walk on the ground. My feet are overly sensitive making unbearable for me to walk or stand - but at other times I can fully enjoy being on my feet! the hummingbirds beauty is mysterious, amazing and untouchable. As for the snake, I always believed the myth that they could dislocate their jaw to eat. I thought this was amazing, until pieces of me started dislocating... it's not exactly the best feeling in the world, but everything does pop back into place!

Thanks so much for making something so often crappy into something fun! This is my 'Invisible Comic Hippo'. I chose the hippo, because I have Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and I felt the hippo could represent this pretty accurately □ I often feel like I weigh 200kg, and the best way I can explain the aches/pains and fatigue is like having weights strapped all over your body. As you can see hippo, has weights all over her arms. I've also made her head proportionally bigger than the rest of her body, as I find some of the neurological symptoms the hardest to deal with- brain fog, slurring speech, not being able to think clearly or logically, forgetting where I'm going or what I'm doing etc etc. Hippo is also covering her ears, representing what I'm like during a crash!! Any tiny noise can send me off or can feel unbearable □ The bags under the eyes show the fatigue side of the illness, and the many red nasty pimples show all the toxins that have trouble escaping when you have CFS/ME. Headaches are often a new normal for lots of sufferers, and I know for me they are a clear warning sign for when I'm starting to over do it, or have done too much. This is shown by Hippo's big red blob running along her forehead. Last but not least the big bulge in her tummy shows the many leaky gut/ food intolerance symptoms CFS/ME sufferers experience. Although Chronic Fatigue Syndrome is cruel and debilitating, it's not all of me and it certainly doesn't define me. This is why I've dressed hippo in bright clothes. Because that's when I'm happiest- dressed up and seeing my beautiful friends and family! ☺️

This is Ajahn Grrrrrumbleton. He represents my Postural Orthostatic Tachycradia Syndrome. Why the weird name, and weird robes?.... in Buddhism, many monks will go by the first name Ajahn, a thai word which translates as teacher. As my invisible cosmic zebra is my biggest teacher, I thought it was fitting that he'd be a Buddhist Monkster. (Monk + monster, I'm very proud of that one.) His paws are dark purple to signify the blood which pools in my legs, his eyes are confused (and admittedly slightly crazed) with big dark circles to signify the fatigue, and his twisted horns represent the dizziness I experience every single day. His left eye contains the colours of the planet earth, to represent the fact that I often feel like a watcher, like I'm stuck in a glass bubble watching the world pass me by. I can also assure you that this big fluffy guy is incredibly bendy. This sounds cool (and looks pretty cool if I say so myself) but underneath this fun exterior lay very unstable joints, which rarely stay where they need to stay. Although he's a little scary, I happen to think he's very loveable. He's taught me so much, and will continue to do so.

I'm Anna and I have EDS, Dysautonomia, and POTS. I also suffer from chronic fatigue. That's why my Invisible Cosmic Zebra's body is a sloth (since sloths sleep 15-18 hours). This is also why my ICZ has dark circles under its eyes. My Invisible Cosmic Zebra has a fish tail because at times, chronic illness fighters may feel like a fish out of water. My ICZ also has zebra stripes for EDS awareness. Thank u so much for an amazing way for chronic illness warriors, to have fun while being creative! I really enjoyed it!

My Thing I named Alice and represents the aura I get during a migraine headache, which sometimes makes you feel like you're in Alice in Wonderland and your head feels too big for your body. My auras are very strange; the first time I had one I thought I was losing my mind, but apparently this is "normal" and so now when they happen I just try to relax and enjoy the show!

Naomi V, 18 years EDS-Foundation Netherlands My artwork speaks for itself.

My Thing has cervical facet syndrome, which was caused by an injury to my neck. I was really lucky it wasn't worse, so I call it my Lucky Ducky.

Resa 12 years, The Turtle: EDS-Foundation Netherlands The turtle moves slowly on land, but moves smoothly in the water. The heavy shield feels much lighter in the water. I have trouble walking and use a wheelchair at times, but in water I feel lighter and I move much better. The shield of the turtle looks like a zebra; the symbol for a rare disease. The turtle carries his shield with him everywhere he goes, like I carry my rare disease with me everywhere I go. The stars show my dizziness. The red spots show my pain and the green spots symbolize my bruising and poorly healing wounds. Despite all of that the it’s a happy turtle.

by Laura B, 36 years EDS-Foundation Netherlands May I introduce you to my invisible cosmic zebra? This is Fluff. Fluff often suffers from the abdomen, which sets on due to gastrointestinal problems. And if the belly is set too far, stretch marks will develop. Fluff is not so sorry, but sometimes it is annoying because it itches so. Fluff is also very entrepreneurial, but because of wobble legs, cold feet (and therefore less feeling) and double seeing in different ways, things sometimes go wrong. That immediately results in bruises and scars. Fluff sees that as victory signs, silly Fluff. The heart of Fluff can not always have it well, then it feels as if it wants to escape, with Fluff you can even see a print of an escape attempt. The needles and clouds are often in the way. But as you can see, Fluff has no fingers and his arms are too short. So just pulling out the needles or waving away the clouds is not possible. Fluff is also often tired, because his plug is broken. All this means that Fluff has to take many extra things with him on his adventures. Just by a string, so that it does not all blow away. What I am proud of is that, despite everything, Fluff continues to smile and still goes on an adventure without fear. Fluff's ears are very special. Because he can not only hear well with it, sometimes it seems that they are connected to other parts of his body. If something nice is planned, then it may just be that a thread comes loose. Then the question is always whether the fun can still continue. Fluff is therefore always afraid that something will go wrong, and tries to compensate with intensely precise planning. But yes, that does not always work well.

This was an IG entry for Lyme Disease, babesia and Bartonella.

This is MOZZA, it is this Thing I take care of called allergies and I am constantly blowing my nose, sometimes I wish there were a tissue permanently stuck to my nose.

My name is Anna and I'm 13 years old. I was diagnosed with Ehlers Danlos Syndrome, Dysautonomia, and POTS. Due to my chronic illnesses, one of my symptoms is dizziness. That's why my Invisible Cosmic Zebra is dizzy. Eveyrone who has a chronic illness is as strong as an elephant, so that is why I choose to draw an elephant. The zebra stripes represent my EDS, since the EDS symbol is a zebra. I draw dragonfly wings on the elephant because dragonflies are the symbol for Dysautonomia awareness.