Please help raise awareness about a serious illness that hides in plain sight
My name is Ang. If you’ve been following my story then I’m sure you’ve heard about this, but I’ve come down with a chronic illness. I have severe-spectrum MECFS. Myalgic Encephalomyelitis, or cruelly called Chronic Fatigue Syndrome, which downplays how much of a devastating, horribly disabling and terrifying disease this is.
It is an illness that affects millions, leaving a good portion of us housebound or bedbound, some so sick they are paralyzed and need to be tubefed and others die from the illness or complications.
I’ve been bedbound almost 3 months now since my illness has been progressing (which is nothing compared to how quickly it can become years), so sick some days I cant lift a spoon to feed myself, talk, or tolerate light and sound. I can’t draw anymore which was my passion in life as an artist, let alone take care of myself. I can’t even tolerate watching TV or play games most days to distract myself from the trauma caused by being confined to a bed in this sort of agony.
I got ill like this after getting the flu in January, and it’s been downhill from there as I started having bizarre neurological symptoms and collapsing episodes where I was unable to move, the energy draining from my body as the days went on until I needed a cane to walk, then a walker, then I was housebound with a wheelchair, and now I am bedbound and the severity steadily worsens with no let up so far despite doing everything I can to stop or slow the progression.
It is a level of sickness that is overwhelming me and my life is uncertain, but it’s looking grim from this point. I’m in severe pain constantly, on top of having horrible dysfunction in every other part of my body. I’ve only been steadily declining.
I lost my entire life right as it felt like it was starting. I was an artist working my dream job at Cartoon Network, and now I may never be able to return to the animation industry or live out my dreams of telling the stories I wanted.
The worst part is this illness could have been treatable by now! But it’s not, due to a deliberate choice of abuse and neglect by medical institutions. Most doctors aren’t trained to treat or diagnose M.E. and it gets practically no funding. Most sufferers are told it’s all in our heads (wrongfully diagnosed with conversion disorder or functional neurological disorder) even with evidence coming out that it’s a physical neurological disease and the only treatment we are given is get told to take anti-depressants, see a therapist, and exercise (despite exertion intolerance being the hallmark symptom and dangerous).
So the only way people like me have any hope of getting better is if we get a surge in awareness and understanding, and hope it leads to more funding and research. With decades of neglect and lives lost, this can’t go on.
At first I asked for donations when I was trying to figure out what was happening to my body as I threw money at doctors appointments begging for help only to get turned away and given no help, dwindling away my savings from when I used to work. And while donations were loved and helped significantly in my financial situation, it will not give me access to effective treatments if they don’t exist.
That is why I am asking you to help spread awareness. Please educate yourselves and donate if you can to organizations that research M.E.
People like me are suffering with a monster illness as debilitating as late-stage AIDS or cancer, hopelessly sick and dying with little help and living in severe medical neglect. I can’t even get a caregiver which I need now because my family can’t care for me longterm, all because my illness isn’t taken seriously by health insurance companies!
We need help. People with M.E. need help so bad because a lot of us are even too sick to advocate for ourselves.
If you want to know more there’s a wonderful documentary on Netflix made by M.E. sufferer, Jennifer Brea called Unrest (2017). Please give it a watch.
Please share this. I am one of the #millionsmissing and while I have not been suffering with M.E. for very long compared to others, the trauma and destruction this illness brings is great and no one should have to go through this. I would not wish this suffering upon even my enemies.
We need awareness. We need advocacy. We need understanding. We need funding. We need diagnostic markers. We need research. We need effective treatments and hopefully one day a cure.
I may never have my old life back, and I don’t want anyone else to keep suffering the way I have since I’ve gotten sick. The pain is indescribable. I want one day for someone to get sick like I and others have only to learn they can be diagnosed and effectively treated.
Please help bring our stories to light. Please help save our lives.
Silver does this also, which was probably handy for silverware before antibacterial dish soap was invented.
That’s mentioned in the article as well. They also stated that a copper or silver container can disinfect a pot of water in a few hours. im gonna add a copper vessel to my emergency provisions now. @yourunclejingo you may find this stuff interesting too.
Its almost like our ancestors did shit that made sense even if they didn’t always fully understand why.
London-based student Lewis Hornby is a grandson on a mission. When he noticed that his dementia-afflicted grandmother was having trouble staying hydrated, he came up with Jelly Drops—bite-sized pods of edible water that look just like tasty treats.
Each of these colorful “candies” is made up of mostly water, with gelling agents and electrolytes making up just 10% of their composition. Available in a rainbow of colors and presented in packaging reminiscent of a box of chocolates, Jelly Drops are an easy and engaging way to avoid dehydration—a common problem for those suffering from degenerative neurological diseases.
“It is very easy for people with dementia to become dehydrated,” he explains. “Many no longer feel thirst, don’t know how to quench thirst, or don’t have the dexterity to drink.” With this in mind, Hornby set out to find a solution. In addition to seeking advice from psychologists and doctors, he opted to “experience” life with dementia himself through the use of virtual reality tools and a week in a care home.
Once he was familiar with what dementia patients need, he brainstormed what they want. “From my observations, people with dementia find eating much easier than drinking. Even still, it can be difficult to engage and encourage them to eat. I found the best way to overcome this is to offer them a treat! This format excites people with dementia, they instantly recognize it and know how to interact with it.”
Case in point? Hornby’s own grandmother’s reaction: “When first offered, grandma ate seven Jelly Drops in 10 minutes, the equivalent to a cup full of water—something that would usually take hours and require much more assistance.”
The other day at the mall i saw a 15 year old sitting in a Claire’s piercing booth and it took every fiber in my being to not just grab her and take her to the actual, clean and sanitary and not guaranteed to fuck up your ears tattoo shop literally next door. Like I was frantic. Snakes manifested in my house
Piercing guns almost ALWAYS cause infections
They hurt more because they jam dull jewelry into your ear
Needles from a professional are designed to allow for minimum damage thus less pain.
The people working there literally have no idea what the fuck they’re doing and just guess it with a 1 hour training video vs a professional who trained under a mentor for at least a year and has a passion in the craft
They use bad metal for healings (copper, silver, etc) that can irritate ears. Surgical grade steel should be the only thing in your healing piercings
They put them on way to tight, causing swelling issues. Swelling is normal and piercings should be large enough to allow for that
They give you shit aftercare advice and cleaner (literally just buy saline solution at Spencer’s or hot topic for 8 dollars at the most and don’t touch them at all)
If done on cartilage it can LITERALLY SHATTER YOUR EARS
Please if any young girls in your family want their ears pierced take them to actual professional and don’t trust piercing guns. If a professional says your kid is too young (I.e a fucking baby) then trust their professional judgement. It costs more but you are getting essentially a art piece from a highly trained professional who knows what they’re doing vs a part time min wage employee who had 1 hour training on how to pierce ears.
I literally wrote an entire essay in college why piercing guns should be banned with pictures and my professor told me she was so interested in my topic and had no idea and even googled the topic herself out of curiosity and was horrified on the amount of damage they case
I am a licensed piercing professional and this is all sound and accurate advice. Get your piercings done by a licensed professional at a reputable shop. Not at the mall kiosk that uses piercing guns. Not by your friend who ordered a kit off of Amazon.
Association of Professional Piercers Aftercare Guide:
I got my ears pierced when i was like…10 and cried for hours afterwards because they used a piercing gun. That stuff made me feel like my ears were on fire!
I hear a lot of patients say stuff like this! TBH like…it is our job, and we expect to do stuff like that for our patients when we come in in the morning/night! I’d MUCH rather have a patient who needs a lot of help but is pleasant than an asshole who hardly ever asks for anything, haha! TuT But I totally get the “agh I’m bothering everybody why can’t I just stop” vibe, hgh. Uh, let’s see.
The biggest thing you can probably do, especially if you’re self-conscious about using the call light, is to try to cluster the things you need together. if you notice that you’re cold and you need an extra blanket–do you need a top-up on your water? Some crackers? A new ice-pack? We do a lot of steps in a shift and a lot of the time many of the things you want are gonna be stored close together, so it’s easiest to grab all of them at once.
That said, if you’re being pretty polite and pleasant, treating us like human beings and doing your best to work with us, and your nurse still acts like an asshole to you? Your nurse is just an asshole. TBH the fact that you’re thinking about this makes you the top percentile of patients and I would love to take care of you if you ever ended up in my hospital, haha. ^u^
Develop muscle mass: by developing muscle, you can effectively “fill” areas with excess skin, this will make it tense. For men lifting weights is an excellent starting point, for women doing resistance exercises such as push-ups, leg lifts and sit-ups are a good option.
Try a sea salt scrub: scrubs increase blood circulation, thus stimulating the healthy production of elastic and collagen, both necessary to restore firmness to your skin. Apply the exfoliate in the shower about 3 times a week to get the best results.
Get a massage: just like the sea salt scrub, massages stimulate blood circulation and these can improve the health of your skin and its general elasticity. Although this is not a proven method, it will not do any harm, in fact you will be more relaxed than ever before.
Take vitamin C: if you are not eating an orange a day, it may be a good time to start with this habit. Vitamin C is essential for the production of collagen, we must obtain enough vitamin C to give our skin the ability to re-tense and shrink as before.
Fill with cream: there are many creams available on the market designed to firm the skin and stimulate the production of elastin and collagen. Just make sure you do a thorough investigation to choose a reliable and good quality product. This way you avoid wasting your money.
Drink lots of water: staying well hydrated is vital for skin elasticity, so be sure to take Water all day, every day. You can also eat fruits and vegetables rich in water to increase your hydration, if you do not like the idea of carrying a bottle of water with you always.
Wrap yourself up: there is a treatment called body wrapping that has helped many people.With this technique, a lotion is applied to the problem area, which usually contains honey, clay, chocolate or something similar and then wrapped with a plastic. You relax for a half hour while this wrap does its job of detoxifying and cleansing your skin. Although the results of this method have not been scientifically proven, many women claim to see results after just one treatment.
Stay moist: the more moisturized your skin is, the easier it is to reproduce new cells. To give your skin the chance to recover, try to keep it as moist as possible. Use a cream that contains vitamin E or you can also use an oil like coconut oil.
If possible, focus on a gradual and healthy weight loss, in this way you can avoid flaccidity, because you will give your skin enough time to adjust to changes in your body.
I was talking to my mom the other day, and she said she was going to start going to the gym, because its important care for your body. I’m disabled w/ multiple chronic illnesses, so going to the gym is impossible for me. She seemed to realize this, and started to backtrack, saying like – its part of taking care of herself, and I interrupted and said, “Its okay mom. You and I taking care of ourselves look very different”. And thats what I would like you to know.
Taking care of yourself looks different.
For some people, taking care of themselves looks like fruit smoothies and gym visits, cutting out sugar and weight training.
For some people, taking care of themselves looks like hospital visits, feeding tubes and ports. Needles and tests.
For some people, taking care of themselves looks like taking medication and lying down in a cool dark room.
For some people, taking care of themselves looks like getting any calories in their body that they can.
For some people, taking care of themselves looks like adding in more vegetables and trying to go outside to get sun more often.
For some people, taking care of themselves looks like seeing a therapist, keeping symptom journals, and practicing mindfulness, meds, or grounding techniques.
We all have different needs. Please don’t feel bad about how you care for yourself just because someone else is able to do “more”, or their care is more performative or obvious. Please don’t look down on someone for caring for themselves in a way that you do not. Medication and rest are just as important as exercise and vegetables.
Keep doing your best to care for yourself, the best way you know how. Your self care and health is important, no matter what it looks like.
STOP REBLOGGING THIS FUCKING GARBAGE POST. IT IS 100% FUCKING BULLSHIT AND CAN AND MOST DEFINITELY WILL LITERALLY KILL.
DO YOU NOT SEE WARNING LABELS THAT SAY “DO NOT INDUCE VOMITING”? THEY AREN’T FUCKING AROUND. YOU CAN FUCKING BURN THEIR ESOPHAGUS BY CAUSING VOMITING, CAUSE CHOKING, DROWNING, OR MAKE IT WORSE!
AGAIN DO NOT FORCE ANYTHING DOWN ANYONE’S THROAT. THEY. CAN. DROWN.
IF SOMEONE IS LOSING CONCIOUSNESS ALL THE CHIT CHAT IN THE WORLD WILL NOT PREVENT IT AT THAT POINT THEY ARE IN SERIOUS DANGER.
“Buuut i don’t wanna take them to the hospital!!!”
WELL SUNSHINE GLAD YOU’D RATHER HAVE A DEAD FRIEND THAN A LIVING ONE BUT YOU’RE IN LUCK
CALL FUCKING POISON CONTROL. THEY ARE NOT THE COPS. THEY WILL HELP YOU.
AND IF THEY SAY GO TO THE FUCKING HOSPITAL YOU GO TO THE FUCKING HOSPITAL. NO EXCUSES. 0. NONE.
I have seen this shit cross my dash SO MANY TIMES so PLEASE fucking reblog this and prevent some well meaning idiot from accidentally killing someone they love!
For the love of god PLEASE REBLOG THIS
I see this stupid fucking post one a goddamn week and someone is going to literally fucking die from it
Ah yes, thank you, I was waiting for the corrected version.
Reminder not to pick a scab otherwise you’d be undoing the cute platelets hard work!
Man what the FUCK you anime guys doing anymore t
This post has actively helped me with stopping picking at my scabs shut the up fuck
Look, I don’t care WHY you started getting better if your reason happens to be something “lame” or “cringey” or “stupid.” I’ve spent years being shamed for not being motivated to do things for the “right” reasons but now I’m just like “Fuck it, if it works, it’s good,”
If the cute anthropomorphic cells depicted in Cells at Work motivate you to take care of your body, by all means use that.
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