#multiple sclerosis awareness

[thebeesbox]

Day 42 of Pride Flags Drawn as Foxes: Multiple Sclerosis (yes it is technically a symbol not a flag but I couldn't find a flag)

[kindajd]

[unave]

March is Multiple Sclerosis Awareness month, you all have to be nice to me

[adamslilith]

In July of 2022 I was diagnosed with Multiple Sclerosis and on New Year's eve the same year I ALREADY had my second flare up. On YT I talk about this, the symptoms, the denial.. the treatment, and what this might mean for my future.. here's a sneak peek..

And here's the full video ⬇️

[tahere-ravenwick]

I’m taking part in The May 50K challenge this May to raise funds for life-changing research into multiple sclerosis!

MS strikes young people in the prime of their lives. The average age of diagnosis is around 30 years old, although myself and many others I know have been much younger. There is no known cure, yet.

With how amazing and fast the medical field and the knowlage we gain evolves I hope in my lifetime to see MS be a thing of the past. As an example of how much this research is truly impacting on our live in th MS community let me share a part of my story:

Five years.

If I had been diagnosed five years earlier(and I could've been since I had been exhibiting symtoms for well over a decade) I would be dead right now.

The kind of MS I have was a death sentence only /Five Years/ prior to my diagnosis but thanks to how fast medical science progressed and the timing of when my symptoms were noticed(thanks to some "awesome" seizures)I am here now, alive and breathing.

At the time of my diagnosis there was no treatment I could take to manage the symptoms, all the doctors could do was prescribe strong anti-epileptic medication to prevent seizures but that medication didn't prevent the damage, the demyelination and subsequent haemorrhaging, that caused the seizures in the first place.

But! Two years after my diagnosis there had come a new medicine that I was abe to take and that managed my symptoms for nearly a decade, now when that one stopped working(as is sadly the usual with autoimmune disorders) I have almost six different medicines to chose from to treat my rare form of MS.

In such a short time so much has changed and it gives me so much hope that we can oneday be free of this illness.

So please donate, participate yourself, spread the word and please support my challenge to leave MS where it belongs, in the past far behind us.

Your donation will support research into the prevention, treatment and finding a cure for multiple sclerosis to change lives.

Thank you!

[adamslilith-msart]

ARTIST with and despite Multiple Sclerosis.

Watch my latest YT video to find out how I manage to keep pursuing my dreams even though I've wanted to quit many times.

[kikingback]

This Pride month didn't start exactly how I predicted 😅😂

I'm currently (and just provisionally, don't worry!) on my wheelchair again, due to a bad relapse of my multiple sclerosis, BUT it doesn't mean I don't get to show off my flags ✨✨

It's a good time to make people aware of the huge (both material and cultural!) barriers the disabled LGBTQ+ community has to face everyday. There's so much work to make sure we're not forgotten, and we have the right to feel empowered in our true colors ❤️🌈

Happy Pride month to everyone from your friendly neighbourhood Kiki 🏳️‍🌈🏳️‍⚧️❤️🧡💛💚💙💜🤎🖤

[evanoxvt]

The struggles of disabled people without support at home.

I've been away from home for over a week. I have next to no expectations put on me here, but I still have my weekly physical therapy and both myself and Town Crier to take care of.

TC eats 3x a day and obviously, I need food too. My grandparents are cooking about one meal a day at a nearly consistent time, so I'm eating at least once a day consistently. At home, I was lucky if I ate a single meal a day.

I (sometimes) help with setting the table, which consists of paperplates, paper napkins, silverware, and glass cups. Since both me and my cousin help with this, I'm usually not doing any heavy lifting at all.

I spend part of the day downstairs and 'randomly' will go upstairs to lay down for awhile. Usually, after my mid day break upstairs, I bring my laptop downstairs and play some games until dinner and end there or resume playing until the end of the night.

No one critiques my daily routine. No one asks me to do more than I can. Everyone appreciates when I help out.

I was having trouble walking and standing yesterday because I did far too much the day prior, but because I spent the entire day resting I was able to contribute to cooking dinner and I cooked the pasta roni (~10 mins of intermittent standing required). I was able to play games and rest afterward without being yelled at for not doing more, and was even thanked for helping cook a portion of the dinner.

I have a funny sad thing to say about this: Somehow by being asked to do nothing, I've found I can do so much more than when I'm asked to do a tiny bit.

The shittiest part of this story, as random small bits put together as it is, is that I am more disabled when I'm asked to be functional, and less disabled when I can go at my own pace or back out if need be. At home I get asked to do things like empty the dishwasher (which is tons of light to heavy objects, Ina short period of time), vacuum (which is alot of heat, standing, walking, arm movement, a eight on my arm, back movement and back bending, navigation, balance, etc), cleaning things like the bathroom (which required detailed work for some parts plus moving all the things needed so they don't get in the way or touch the chemicals). I could go on and on and on but the point will get muddled if I write the entire list and every problem on every "basic chore" because the truth is that I need alot of breaks, a long period of time, and the option to back out of all of these things to be successful at it without seriously hurting myself. If I do too much today, it will affect me for multiple days. If I do too much for an entire week it will affect me for a month or more, etc. I sometimes feel really good like I did on Friday and accidentally over do it and need to be able to back down from most things for a period of time afterwards.

I normally can't make a box of pasta roni AND move anything heavy (like my laptop) on the same day at home because I'm always expected and forced to do so much more. I usually can't make cookies on days like today where I need to spend multiple hours at a time lying down in between short bursts of sitting or activity, but today I could because there's nothing else I have to do so spending potentially all of my energy is okay. Resting afterwards is okay. No one is upset because less than an hour after making cookies I had to lay down and still am. NO ONE said it's not okay. However if I go home cookies are a luxury therefore the logic goes that "if you can bake some cookies, you can do some dishes too". At home I wouldn't be able to make the cookies because it opens up the idea I'm able to do a ton of chores. I'm not okay right now, that's why I'm resting.

I feel like I'm ranting in circles at this point... but honestly I don't get why most people will see me do one "simple" (for them) thing and assume I'm okay to do things even they don't want to do because it takes up alot of energy... I really don't get it. My health sucks, it goes up and down all day long, all week long, and yet people want to pretend I'm making it up if I can do literally a single thing normal people can...

I hope my fellow disabled friends and people I haven't met yet find themselves in better social situations than me because this isn't okay in any way.

[mxmorbidmidnight]

To disabled people, you have a right to support, you have a right to exist.

We must end this idea of “disabled enough” so many of us deny ourselves or have been denied accomodations and support due to this idea. If you benefit from a cane then you have a right to use a cane. You are not taking away resources from others who “actually need it” if it helps you go about your life with greater ease then you are who it was made for. You have a right to use facilities such as priority seats. You have the right to rest. I promise you my dear that does not make you lazy in the slightest. You have a right to ask when you need support you are not being needy or demanding. If you struggle with urgency issues, you have a right to use the disabled bathroom, if you benefit from it then you have a right to use it. If digit toys help you, then you should be able to carry a fidget toy. If you need more time for certain tasks, you have the right to be given such. I cannot stress this enough, this does not make you lazy. Asking for support does not make you selfish.

You have a right to call others out on their ableism. You are not “too sensitive”, having a disability does not mean you always have to be in good humour about your condition, it does not mean you have to take whatever comes your way. If you are being treated cruelly, if you are being dismissed, demeaned, insulted and talked down upon you have a right to address this.

If you benefit from pre-prepared meals, use them!! It does not make you lazy. All I want you to focus on is that you are keeping yourself as well fed as you can. Reduce your struggle wherever possible! What abled people often consider laziness often is in fact rather how a person with a disability is able to assist themself in their daily life. You are allowed to make things easier for you, in fact I ask that you do.

You are allowed to use mobility aids in public, glucose monitors, nasal cannulas or any other devices that keep you safe and healthy. It does not make you look worse, it is not an eyesore or something that must be hidden. Your disability does not make you unpresentable, you have a right to be in public if your disability affects the way you look, if you make noise or you drool. Your disability does not make you unworthy of being seen.

Your disability doesn’t make you “stupid”. Not scoring well in school does not make you stupid, difficulty with reading or speaking does not make you stupid. Inability to work does not make you a burden. Not contributing to capitalism does not mean your life has no value.

Just because your disability is not as severe as that of others does not mean you shouldn’t be given support. The same goes for if you don’t “look” disabled. You do not owe explanations to others, you should not force yourself to do the same things in the same ways as those without your disability. You are going to do things differently and there are going to be things you can’t do. That does not make you lazy.

I tell you this with all the sincerity in my heart, the only person when it comes to your disability you owe anything to is yourself. You have a right to put yourself first. You have a right to rest. You have a right to exist as you are, a person with a disability.

[chronicallyuniconic]

ive needed a shower for a week and i can't. Im so fatigued in every way. Laying here and staring at the ceiling is all I can do. Everything's too loud, painful, fills my head too fast, nausea, migraine. I don't want to lie in the dark usually, but i kind of want to be as well. In that mindless thoughtless stare breathing through the bullshit of illness. I still forget I'm experiencing symptoms of whatever one. I think Id rather believe I'm not and I've got a recurring cold or something that will go away (it won't).

I still need a shower. Feel like I've been dipped in and out of a deep fat fryer. Wipes and a sponge only go so far. Long for better days with my body despite the awareness things are going to really get bad. I don't want to accept it, at all

Manipulating myself into believing I'm fine. Aiming for that placebo effect

[invisiblepiecesofme]

Have you heard of me?

Have you heard of me? 

My invisible foot steps 

The unscented toxicity of my breath 

My razor-sharp depth in my lashings 

My negative influence. 

I am: 

Toxic 

Narcissistic 

Stress inducing 

Debilitating 

Behavior changing 

Life - bending. 

Have you heard of me?

My residency is permanent 

The feelings I bring are torturous 

I steal all of your senses 

Shatter all of your dreams 

Re – arrange your ways of thinking 

Your, seeing your feeling, 

Your life. 

I am: 

A thief 

A bully 

A terrorist 

Emptiness 

Seclusion 

Sadness 

And loss. 

Have you heard of me? 

I am: 

Multiple sclerosis. 

[kindajd]

HELP ME! I can't deal with this pain anymore.

[pleasetakethis]

Rick and Morty got me in my feels tonight...

[adamslilith]

MS: when your brain hates you so much it literally kills itself.

[delicateindecisions]

Happy Monday everyone! I hope the sun is shining on your beautiful faces, you’re enjoying a delicious cup of coffee, and you don’t let anything get in the way of your ambitions. (Including yourself.)

Let’s do this! 🫧🧼💕🤘🏻☕️