I feel like the headline is a little misleading in that this is a HUGE list of resources where one can get help with paying for things that are sometimes essential to care and/or quality of life, which are often cost prohibitive for those who are on limited budgets.
So I have been meaning to make this for awhile, this is how I personally keep track of what medications I take, along with vitals, stand out symptoms, BMs, etc. This is going to be long because of the photos so I added a read more! I STRONGLY suggest this to anyone who is trying to find symptom triggers, who has memory loss, or just wants to give their doctor a clear cut picture of how their day to day life really is. It has been INVALUABLE to me. I use a “Moleskin Planner” but it could be adapted for any planner. I will probably pick a bigger one next year.
Fuzzy #zebraprint #kneelengthsocks with #pink trim ❤ ❤ ❤
The Ehlers-Danlos Syndromes is often symbolized by zebra stripes. In the early days of modern medical training, the school of thought was if you hear hoof beats, expect horses…not Zebras. Since then, this archaic philosophy harmed many of us living with EDS.
We persevere against great adversity to find a diagnosis holding the answers for lifetimes of pain and dysfunction. Still, we face countless dismissals from less educated practitioners. The Ehlers-Danlos Syndromes, particularly Hypermobility EDS, is intensely more common than once thought. Turns out, the Zebra analogy of the early days of formalized medicine is obsolete!
Even so, my Zebra peeps stake no less in our beloved mascot. The analogy shifts towards the unique characteristics to each, individual Zebra’s stripes. No two Zebra share the same stripe pattern and the same applies to those with any of the Ehlers-Danlos Syndromes. Each of us presents differently, making care management challenging to even the most seasoned practitioner.
Some of us walk, run and work…
Some of us used to…
Some of us will again…
And still, some of us never experience independent functions…
There are too many factors in calculating how different people respond to life with a chronic, progressively disabling conditions but the constant remains: Awareness improves outcomes!
Ten years ago, even with multiple pains, life threatening lab values, and distressing symptoms my doctors could never say what was causing my multisystemic dysfunction. Now, I finally know why but meet with disability because the damage can’t be undone.
This is why I can’t stop talking about EDS! I want others like my former self to know there are answers and hope for better quality of life with diagnosis. It shouldn’t be so hard but the #EDSSociety is taking great strides to ensure the awareness documentation is readily accessible for doctors who want to learn and doctors ignorant to the reality of this complex process. Finally, it’s a start & #ItsOurTime ❤
#EDSawareness #ZebraStrong #vascularehlersdanlossyndrome #pots #chronicillness #wheelchairuser #filas #knobbyknees
Friends, family members and loved ones of learning disabled and mentally ill people need to have a working knowledge of what Executive Dysfunction is, and respect the fact that it is a prominent feature of that person’s psychology and life.
Executive Dysfunction is best known as a symptom of autism and ADHD, but it also features in depression, anxiety disorders schizophrenia, OCD (which by the way is also an anxiety disorder), personality disorders; etc, a whole myriad of mental illnesses and disabilities can result in executive dysfunction.
Years ago when I was like 14 and had recently learned of my autism diagnosis, I watched a youtube interview between autistic people, and an autistic woman said something along these lines:
“Sometimes, a lightbulb will burn out, but I cannot change it. I have the physical capability to change the lightbulb, and I want to change the lightbulb, and I know I need to do it, but because of my autism I just don’t do it. So the lightbulb remains unchanged for weeks. Sometimes people have to change the lightbulb for me.”
When she said that I related so much, because constantly throughout my whole life I have wanted and needed to do things with my wanting and needing being akin to my spurring an extremely stubborn horse who refuses to move. For the first time I learned that I wasn’t just “lazy”, I had a condition that prevented me from doing things as easily as other people can, but unfortunately it took me years since then to understand that.
Imagine that you are a horserider, but your horse is entirely unwilling to move even if you want to move. You dig in your heels, you raise the reins, but the horse refuses to respond. Your wants and needs are the rider, and your executive functions (the parts of your mind responsible for getting things done) are the horse.
I think it’s incredibly dangerous for neurotypical loved ones to not understand, or be aware of, or respect executive dysfunction. Neurotypical can assume that we are just being lazy, careless, selfish or difficult, when in reality we want to do the thing but our brains prevent us from consistently and reliably doing the thing.
That misinterpretation can lead to toxic behavior and resentment on the part of the loved one, which will harm us emotionally and do us a lot of damage gradually over time.
That damage can take the form of internal self-criticism, complicating executive dysfunction even further and making it worse.
edited for easier reading!
I think about this a lot, because I have to. In my own life, as a parent who struggles with executive dysfunction and yet has to teach a child basic life skills, it’s important to know my blind spots and learn to function around them. He’s watching me and learning from my example, so I have to do my best to explain what I can’t always do, and try to do it anyway.
Executive function is such a fundamental and yet hidden trait. It is in charge of reasoning, flexibility, problem solving, planning, and execution/prioritization of necessary steps in any action.
Each task is never one task. Take changing the lightbulb – from beginning to end, it’s a series of steps that must be put in proper order:
Notice light bulb is burnt out.
Recognize that it can be fixed by putting in a new light bulb
Remember where new light bulbs are stored
Go to light bulb storage area
Select new one
Find stool or chair to stand on
Take out old bulb, put in new one
Screw in bulb
Replace chair or stool to previous spot
Throw away old bulb
That’s not even all of them, but it’s a good enough summary for now. There are hidden stumbling blocks in every single step.
A burnt out bulb may go unrecognized as a problem – there’s two other bulbs in the room, it’s a little dimmer, so what? It might take all three burning out before you see it as a problem.
Maybe you forgot where the bulbs are, because it’s been a while. Searching the house is a task you put off, because it’s messy/disorganized/big/you have other more pressing matters. The bulb can wait.
You find the bulb storage, but you’re out of new ones. You have to shop. You’re busy, you put it off until the next time you shop, by which time you’ve forgotten you need a light bulb. Repeat cycle.
You’ve been depressed for a while, or maybe you’re just a messy person. A stack of important documents is on the chair you’d use to stand on to get to the bulb. You know if you move those documents you’ll forget where they are, and it’s tax stuff/homework/your mom’s birthday card, and you can’t forget that. The bulb gets put aside until you deal with those things. But you don’t want to deal with them now, so the bulb waits.
Throwing out the bulb requires safe disposal so that you don’t break it and accidentally cut yourself, or someone else in your home. You have no idea how to safely dispose of it. You put off changing the bulb until you figure out what to do with the old one.
On and on and on. Each step requires problem solving, prioritization, and reasoning. These are the hidden processes that go on in our minds every single moment of every day. Difficult tasks build up, compounding the problem of completing others, until each action requires ten more before you can solve the minor problem you started with. Changing a light bulb ends in a night of doing your taxes. Doing the dishes ends in standing in the dish soap aisle at the grocery story for a half hour trying to figure out which soap to buy for the dishwasher.
When a simple action requires the same effort from you as the most complex, abstract problem-solving…. to put it mildly, you’re fucked. Every day tasks require exhausting mental gymnastics.
So, be kind to the person who can’t seem to change a light bulb. There’s a lot that can stand in the way.
this is such a good addition to my post
Important info!
“Difficult tasks build up, compounding the problem of completing others, until each action requires ten more before you can solve the minor problem you started with. Changing a light bulb ends in a night of doing your taxes. Doing the dishes ends in standing in the dish soap aisle at the grocery story for a half hour trying to figure out which soap to buy for the dishwasher.”
What helps your medical condition might not help other people
What you are comfortable doing to help heal yourself might not be in other people’s comfort zones
The choices you make medically may not be the same choices other chronically ill/disabled/nuerodivergent people make
Respect each other’s medical choices and don’t press them to try something just because it helped you; they might not be comfortable with it and it may not even benefit them.
We have enough adversity from the able-bodied community assuming we all need yoga and vegan diets, please try not to add to that when speaking to your fellow disabled friends.
Tumblr is my fun place, so I don’t usually get into this here, but… reasons.
Lovely people here sometimes use the word ‘Retard’ or ‘Retarded’ or some variation (ie ’________-tard’) and those lovely people do NOT mean anything at all against people with cognitive or physical disabilities.
I understand. I get it. Seriously! I’m not being sarcastic at all. This is on my mind in the friendliest of ways. I don’t mean to embarrass or offend. I just hope to help you understand.
My younger son was born with Down syndrome. He’s doing well (learning, growing, healthy) and I adore him. I’m proud of him. But, for me, slurs against people with disabilities strike a painful nerve. It’s personal. It brings up every fear I’ve ever had about my son being bullied or abused. It hurts.
I can’t step off this soapbox. Life put me on it for keeps.
So, please, consider yourlanguage. 😉 Help End the ‘R’ Word.
Thank you.
Bringing this back because
today is World Down syndrome Day
(3/21 for the three copies of the 21st chromosome that define Ds).
I’m glad this post has gotten some reblogs. Our world needs more kindness, compassion, and consideration. Please do not use the ‘R’ word.
My husband gave me an idea ages ago, and I wanted to actually put it into motion. So today, I give you the ‘Being Visible’ line of shirts.
The goal of Being Visible is to allow people with mental illness, or other invisible illnesses, to help make people aware of their coping abilities on any given day by using the simple image of a battery at various charging levels:
Low charge – low ability to function ‘normally’ or perform daily tasks. May need assistance or frequent breaks Medium charge – diminished, but capable of performing routine or simple tasks during the day. Some assistance may be needed. Full charge – able to perform daily tasks with little to no assistance or reduction in speed, effort, etc. Little to no assistance needed.
These images will be placed front and centre of various T-shirt/tank top designs, to enable wearers to non-verbally alert people around them of their limitations, if they so choose. Of course, as ability levels change, so too can the shirts. On the back of the shirt is the simple text line ‘Being Visible’ above the rod of Asclepius, the common symbol for medicine.
75% of the proceeds will go to the American Foundation for Suicide Prevention. The remaining 25% will go towards my ability to purchase several units of each shirt for my own use.
You can find the shirts at the links listed below. The target goal is 75 units each.
All slides have a light blue background, and the text is written in blue rectangles with rounded corners.
Slide 1: The title is in white text inside a dark blue circle that is centred in the slide.
Sensory Overload And how to cope
Slide 2: The header is in a dark blue rectangle and white text, and the body is in a pale blue rectangle and black text.
Sensory overload has been found to be associated with disorders such as:
Fibromyalgia (FM)
Chronic Fatigue Syndrome (CFS)
Post Traumatic Stress Disorder (PTSD)
Autistic spectrum disorders
Generalized Anxiety Disorder (GAD)
Synesthesia
Slide 3: The text is in three pale blue rectangles that
go horizontally across the slide. All use black text. The last
rectangle has four smaller dark blue rectangles with white text inside
it for the four points. The text is centred in all of the rectangles.
Sensory overload occurs when one (or more) of the body’s senses experiences over-stimulation from the environment.
Basically it feels like everything is happening at once, and is happening too fast for you to keep up with.
Sensory overload can result from the overstimulation of any of the senses.
Hearing: Loud noise or sound from multiple sources, such as several people talking at once.
Sight: Bright lights, strobe lights, or environments with lots of movement such as crowds or frequent scene changes on TV.
Smell and Taste: Strong aromas or spicy foods.
Touch: Tactile sensations such as being touched by another person or the feel of cloth on skin.
Slide 4: A heading in two light blue rectangles with black
text, followed by a table with a dark blue first row that has white
text, and then alternating pale blue and white rows with black text.
(The table is not really a table, it is just a four-column list.)
Obviously, everyone reacts in differently to sensory overload.
Some behavioural examples are:
Irritability — “Shutting down” — Covers eyes around bright lights — Difficulty concentrating Angry
outbursts — Refuses to interact and participate — Covers ears to close
out sounds or voices — Jumping from task to task without completing Overexcitement — Low energy levels — Difficulty speaking — Compains about noises not effecting others High energy levels — Sleepiness/fatigue — poor eye contact — Overly sensitive to sounds/lights/touch Fidgeting and restlessness — Avoids touching/being touched — Muscle tension — Difficulty with social interactions
Slide 5: The header is in a dark blue box with pointy
corners and white text. The body is in a pale blue box with pointy
corners and black text.
There are two different methods to prevent sensory overload: avoidance and setting limits:
Create a more quiet and orderly environment – keeping the noise to a minimum and reducing the sense of clutter.
Rest before big events.
Focus your attention and energy on one thing at a time.
Restrict time spent on various activities.
Select settings to avoid crowds and noise.
One may also limit interactions with specific people to help prevent sensory overload.
Slide 6: This looks the same as the last slide except the text in the header is black.
It is important in situations of sensory overload to calm oneself and return to a normal level.
Remove yourself from the situation.
Deep pressure against the skin combined with proprioceptive input
that stimulates the receptors in the joints and ligaments often calms
the nervous system.
Reducing sensory input such as eliminating distressing sounds and lowering the lights can help.
Calming, focusing music works for some.
Take an extended rest if a quick break doesn’t relieve the problem.
Slide 7: Four light blue rectangles with rounded corners, stacked one above the other, with black text.
What if someone you know is experiencing sensory overload?
Recognize the onset of overload. If they appear to
have lost abilities that they usually have, such as forgetting how to
speak, this is often a sign of severe overload.
Reduce the noise level. If they are in a noisy area,
offer to guide them somewhere more quiet. Give time to process
questions and respond, because overload tends to slow processing. If you
can control the noise level, for example by turning off music, do so.
Do not touch or crowd them. Many people in SO are
hypersensitive to touch – being touched or thinking they are about to be
touched can worsen the overload. If they are seated or are a small
child, get down to their level instead of looming above them.
Slide 8: Similar to previous slide, only with three rectangles instead of four.
Don’t talk more than necessary. Ask if you need to
in order to help, but don’t try to say something reassuring or get them
talking about something else. Speech is sensory input, and can worsen
overload.
If they have a jacket, they may want to put it on and put the hood up. This
helps to reduce stimulation, and many people find the weight of a
jacket comforting. If their jacket is not within reach, ask them if they
want you to bring it. A heavy blanket can also help in a similar way.
Don’t react to aggression. Don’t take it personally.
It is rare for someone who is overloaded to cause serious harm, because
they don’t want to hurt you, just get out of the situation. Aggression
often occurs because you tried to touched/restrained/blocked their
escape.
Slide 9: Similar to previous slide, only with two rectangles instead of three.
When they have calmed down, be aware that they will often be tired and more susceptible to overload for quite awhile afterwards. It
can take hours or days to fully recover from an episode of sensory
overload. If you can, try to reduce stress occurring later on as well.
If they start self-injuring, you should usually not try to stop them.
Restraint is likely to make their overload worse. Only intervene if
they are doing something that could cause serious injury, such as hard
biting or banging their head. It’s a lot better to deal with self-injury indirectly by lowering overload.
Slide 10: The header is in a dark blue rectangle with white
text, and the other text is in a row of five dark blue circles with
white text. The text is centred in all shapes.
To summarise – Remember the 5 R’s
Recognise The symptoms of overload
Remove Yourself from the situation
Reduce the stimulus causing the overload
Relax Your body and calm yourself down
Rest Yourself as you will most likely feel fatigue.]
Tumblr is my fun place, so I don’t usually get into this here, but… reasons.
Lovely people here sometimes use the word ‘Retard’ or ‘Retarded’ or some variation (ie ’________-tard’) and those lovely people do NOT mean anything at all against people with cognitive or physical disabilities.
I understand. I get it. Seriously! I’m not being sarcastic at all. This is on my mind in the friendliest of ways. I don’t mean to embarrass or offend. I just hope to help you understand.
My younger son was born with Down syndrome. He’s doing well (learning, growing, healthy) and I adore him. I’m proud of him. But, for me, slurs against people with disabilities strike a painful nerve. It’s personal. It brings up every fear I’ve ever had about my son being bullied or abused. It hurts.
I can’t step off this soapbox. Life put me on it for keeps.
So, please, consider yourlanguage. 😉 Help End the ‘R’ Word.
Holding the Bowl 