Peregrinations with Ehlers-Danlos Syndrome

[Broken up for accessibility]

It is 7:30am. I have been up since 5:00am from pain. I am very close to puking and doubling over. I am sitting upright, typing this, rocking in my chair, and kind of spacey, and I realised this is a common feeling for me but I don’t think it has a name. 

I’ve covered Chronic Illness terms before but I’ve never found a term for this concept, so I’m giving it one: 

Pain Delirium.

Not to make light of it, but in one meme,  

For a lack fo a better term, PD (ironically my initials) is when your body is in so much pain that mentally, you clock out. It’s simply too much to deal with, kind of like emotional trauma and PTSD. This is why chronic pain patients are often not taken seriously - “You’re still doing X, how much pain could you be in?”

If I fully registered my pain constantly, I would be unable to function. It is essentially an ongoing trauma to my body. 

Pain Delirium is when your brain has met your body’s breaking point.  

You’re exhausted, insufficiently medicated, and out of relief options. Your brain checks out because it can’t deal with the added stress of being in pain on top of the pain.

From my experience, PD is:

Gallows humour

Perceptual shut down - often found in both autistic people and abuse/trauma survivors

Brain fog (turned to max)

Rocking

Resignation

Silence

Brain on tipsy auto-pilot

Uncontrollable talking (often jumping concepts without realising)

Immobility and shutdown - after a certain point of pain, my body can’t handle everything at once, so it turns off nonessential systems such as vision, hand dexterity, coordination, and cognitive function. Think of it like a computer shutting down to update.

Great over/underestimation of my abilities - “I can do this this and this, totally fine,” then stand up and fall flat on my face. Or, in the other direction, “Getting up to brush my teeth, I could trip and break something. Too risky no move.” 

Giggly and stupid without warning

When he asked me what I did with my days at the moment, I explained the current situation (which is that I’m unemployed, out of education, and mostly housebound), and told him that I really wasn’t busy at all. I tried to play it off as a joke, like I always do, but he seemed to take it seriously. 

He said: “It sounds to me like you’re very busy, you’re just busy taking care of things that most people don’t have to worry about.” 

And that’s true. I don’t really get to think about it like that, because I’ve been told over and over again by people in my life that I just need to “try harder, do more, be busy” until everything just sort of… works itself out. But I am busy - I have to keep myself distracted to deal with psychotic symptoms that I currently don’t have any medication for, I have to spend a lot of time resting so I’m not in as much pain and have the energy to do what I need to do, it takes me significantly longer (and more effort) to do basic self-care tasks and chores… The list goes on. 

I always want to put “me” - I probably spend 20 hours a week taking care of myself above and beyond the basics (sleep, housework, cooking, etc).

Decided to stick with a typical AW for the 50th comic. Maybe I’ll do something more celebratory for the 100th XD

Bitch. Do you think I don’t try?

Since February, when I started showing symptoms, I have tried to balance Crohn’s Disease and having a fun life. Especially since I’m 24 and these are supposed to be the “good old days.” But every time I try, Crohn’s throws a wrench in my plans.

Want to go see a movie? You’re in a flare-up and can’t go two hours without running to the bathroom, so good luck with that.

Want to hang out with friends? You’re always too sick to go anywhere and now you’re depressed that you’re sick so you don’t even want to go anywhere.

Want to go to an event you’ve been looking forward to all year? Here’s an unexpected rash on your leg that makes it too painful to walk. Also, you maxed out all your spoons for the week.

Want to travel and see your long-distance significant other who you haven’t seen in a bloody motherfucking year? You have to push your trip back because of an unexpected doctor’s appointment.

Want to get an apartment and finally move out of your parents’ house? You have enough money to pay doctor bills or rent but not both.

When he asked me what I did with my days at the moment, I explained the current situation (which is that I’m unemployed, out of education, and mostly housebound), and told him that I really wasn’t busy at all. I tried to play it off as a joke, like I always do, but he seemed to take it seriously. 

He said: “It sounds to me like you’re very busy, you’re just busy taking care of things that most people don’t have to worry about.” 

And that’s true. I don’t really get to think about it like that, because I’ve been told over and over again by people in my life that I just need to “try harder, do more, be busy” until everything just sort of… works itself out. But I am busy - I have to keep myself distracted to deal with psychotic symptoms that I currently don’t have any medication for, I have to spend a lot of time resting so I’m not in as much pain and have the energy to do what I need to do, it takes me significantly longer (and more effort) to do basic self-care tasks and chores… The list goes on. 

I always want to put “me” - I probably spend 20 hours a week taking care of myself above and beyond the basics (sleep, housework, cooking, etc).

My mom has to take thyroid medication and will have to take it for the rest of her life.  Because her body will not function without it.

That is not addiction, that is dependency.

I am on Lyrica for my Fibro.  If I stop taking it for even 24 hours, I will experience massive withdrawals that could cause seizures and even death.  (And I’ve had to go off it suddenly 3 different times.  Thanks USA HEALTHCARE!)

That is not addiction, that is dependency.

If you take your pills as prescribed, you are not an addict.  Most medications cause withdrawals when you stop taking them because your body has become dependent on them to function normally.  That also doesn’t make you an addict.

The Great Smudge - Table Cat

“HoMEE home”

“Mario 10”

“Don’t matter, give up”

“Anus Start”

I’ve seen a post about first time wheelchair users guide. Since I’ve been using a walking stick for a while now, I thought I’d make one specifically for these types of aids. These will be in no particular order– they’re just things you probably don’t know about using a walking stick.

- if you’ve hurt you left leg/ect., hold the stick in your right hand (if possible) and if you’ve hurt your right leg/ect., hold the stick in your left hand. Trust me, your shoulders and back will thank you

- the pad of your hand will hurt– it just will. You’ll get used to it and your hand will develop more protection there eventually. To start out, look into a pair of fingerless gloves. 

- a fold up/collapsable stick is good for beginners because you can take them on public transport/cars without too much hassle (they also fit nicely into desks and under chairs).

- When you’re using your stick, you only have one free hand. This may seem obvious, but it really impacts your every day life. Practice for a while around the house, so you get the feeling down.

-there are a lot of different types of walking sticks: fold up, one leg, two legs, three legs, etc. 

(these are only a few of the many designs)

-if possible, go to a shop that specifies in walking sticks. ask to try a few out, they will also help make sure that you’re using on that’s the right height for you.

- a height adjustable walking stick is a miracle, especially if you want to wear high heels to an event.

- you don’t need a prescription to get a stick in most regions (but in some cases they may help get a discount)

- getting a stick that is the right height for you if very important (even with an adjustable one). Too short, and you’ll hurt your shoulder. Too tall, and you can’t put weight on it properly. The correct height is when the highest part of the handle reaches your wrist when the stick is standing straight up, as shown in this image.

- if you’re young (under the age of 60) people will stare, often they wont mean to– it is annoying but you’ll get used to it. 

- again, if you’re young, people will ask why you’re using the stick, all. the. time. Even strangers will sometimes ask. You can use a really simple answer like “medical condition” and if they pry further, you can say “That’s all I’m comfortable saying”. If they don’t know you, or don’t know you well, they really have no business asking.

-Children will ask, a lot. Please be gentle with them, especially if they’re really little. I know it’s annoying but you can give children reallllllllly simple answers like “I just need it to help me walk” and most of the time they’ll be perfectly content with that and won’t ask more.

- don’t be afraid to use more advanced mobility aids if needed on bad days, or when readily available (eg. at a supermarket, when they have motorized wheelchairs for customers)

- You don’t have to use your stick every day for you to have a disability or for you to own a stick. Even if you need it once a week, once a month, you can still own one. You’re not less worthy or a mobility aid than those who need one everyday. 

-Use backpacks, the ones with 2 well-padded straps that go over your shoulders evenly. Use them as much as you can. Bags that you hold in one hand or have one strap make you unbalanced or take up your only free hand. 

- If you want to, decorate your stick, go all out. 

Bonus tip: you want the long part of the cane to be directly under your arm if possible so the weight is transferring properly. If you have a cane whose top branch/arm isn’t centered over the long part of the cane, try flipping it backwards - it will help with weight transfer and hurt less in the long run.

i fucking hate self care posts made by neurotypicals so here’s one from someone who Actually Gets It

-can’t shower or take a bath? me either. dry shampoo can make your hair look and feel cleaner, and baby wipes or makeup wipes work great to get the top layer of grime off your skin.

-can’t wash your sheets and make your bed? i feel you. push your blankets out of the way and shake the crumbs off your sheet. it will at least be a bit more comfortable.

-can’t even change out of your dirty pajamas? been there. hit yourself with some febreeze and a lint roller. if you can, brush your hair. if you can’t, hair ties and bobby pins are fantastic.

-can’t make anything to eat? same. if you can, there’s no shame in ordering food. in fact, it’s probably better you eat something rather than go hungry. if you can’t, try and find something that comes pre-made or takes minimal effort to make. at the very least, drink some water.

can’t respond to messages or reach out for help? yeah, i get that. set an alarm for a few hours from now and respond to any messages you need to once you’ve given yourself time to prepare. if they’re Important Messages that need Professional Responses, you can find fill-in-the-blank format rough drafts on google. as far as personal messages go, don’t feel bad for sending a mass “I’m sorry, I’m in a personal emergency right now. I’ll get back to you as soon as I can.” response to everyone.

-can’t even sleep because it’s so bad? asmr videos always knock me out, personally, but i also watch a lot of bob ross. just try to find something quiet and soothing to use as background noise and take your mind off it, or at least give you a more peaceful environment to think about it.

-can’t go for a walk/drive? try opening the blinds or curtains. you’re still exposing yourself to the outside world. baby steps. (i also play animal crossing or sims; it may be virtual but fuck it. i went on a walk.)

-can’t go into work/school? let people know. let your coworkers or classmates know it’s an emergency and you can’t make it. give yourself up to two days, but then you have to go back. ask to have your work emailed to you so you know what you missed.

-can’t brush your teeth and wash your face? makeup or baby wipes and gum or mouthwash. don’t let yourself physically rot bc you’re rotting emotionally.

(1) eat some calories

(2) if that works for a while think about fat/protein/carbs

(3) if that works for a while we can talk about fruit/veggies

Don’t Ask “Are You STILL Not Well?” Our conditions are ‘chronic’ This means they are possibly never going to heal. After a few years you should catch on to this

Don’t Tell Us About Your Miracle Cure Yes we know about magnesium, crystals, epsom salts, and yoga. We are eating a balanced diet, we might even meditate regularly. The fact that we are still ill doesn’t mean we haven’t tried it. The fact that we haven’t chased after every suggestion doesn’t mean that is the one thing keeping us unhealthy… we get a LOT of these. A LOT

Don’t Get Angry When We Say We’ve Tried Everything You Think Of  We are not dismissing you and your value. We are not being smarmy or trying to throw a pity party for ourselves. We have been researching this condition for years now. Don’t feel so shocked that we’ve already considered every idea you’ve come up with in 5 minutes!

Don’t Tell Us About How Weak Our Generation is and How Back In Your Day You Just Fought Forward and Pretended it Wasn’t There 1) You are NOT chronically ill. Your problems and my ‘problems’ are my ‘normal’ 2) Is being stupid and self destructive really something worth bragging about or emulating?

Don’t Tell us About Your Aunt’s Cousin’s Nephew’s Friend Who Has Our Condition and Still Does The Things We Don’t These conditions have a VERY broad range to them. Some people will have them and live totally normal lives. Some people will struggle with them. Some people will consider even what I do amazing freedom and strength. The fact that the people you know who have this condition are doing things is probably because they are the only ones who are able to be in the places you go. Trust me, I’ve read the statistics. Majority of us are not able to do what we are not able to do.

Don’t Ask Us When We Are Going to Get Past This or be Done Making a Big Deal About This Believe me, it is a full time job as a chronically ill/chronically injured person to not blame ourselves. We don’t need you reminding us what a burden we’re being or telling us we could totally get past this if we just tried. We are trying. And we do get that you’re tired of worrying about our issues. We are too. But unlike you, you can walk away and not notice it anymore. We have to live with this every waking minute. We can’t run away from this because this is us. This is our reality

Ways You SHOULD Talk To Chronically ill/Chronically Injured People

Just Talk to Us Seriously. Just have a light conversation with us. It is stinking lonely going through this and we are always thankful for a distraction. Talk to us about what interests you. Talk to us about if you think whales burp through their blowholes. Talk to us about anything!

If We Can’t Stand Then Sit To Talk to Us This isn’t a demand, but if you want to put us more at ease, it really does help. It is something I myself didn’t realize until I lost my ability to stand for long periods of time. People like to stand while talking. More to the point, they like to stand FAR away from anything you can sit on. Even if you are sitting, people like to stand to talk to you, and trust me. It is both daunting and kind of awkward talking to people’s crotches as they tower over you. If we are sitting down, it doesn’t mean you need to walk away because we are done talking to you. It means we needed to sit down. Sit down with us. It’s relaxing. We’ll talk for hours not distracted so much by our increasing pain and trying to awkwardly stand as long as we are sitting.

Talk About Things Other Than How Hard Our Lives Must Be It’s not like we are completely against it. I notice other people walking with cool looking canes and want to ask them where they got them (cane envy as I like to call it). This is a huge part of our lives and we can’t avoid talking about it entirely because it does take up our schedules, choices, and more. But we are more than our suffering as well. We like to talk about movies, games, books, some even like to talk about sports! I mean there’s a whole Paralympics  thing! (Though not me… Don’t talk to me about sports. I’ll have literally no idea what on earth you’re talking about)

Roll With It If you ask if we want to go to a museum with you, and we reply “Oh I’d love to, unfortunately I can’t stand that long.” or “Unfortunately I get my nerve blocks at that time so I’ll be out of it for the day.” Don’t solemnly go “Oh….” and then sit their awkwardly thinking how you just ruined the mood. The fact that we casually mentioned something like that usually means we are feeling comfortable with you. To us this isn’t a trigger point, it is literally just our weekly schedule. It’s almost the same as saying “Oh I can’t, I play golf Saturday mornings!” Just suggest another date. Or another activity. Ask us if we have anything you might like to try. Just keep the conversation going!