spoonie

noun;

people that live with chronic illness; measuring their abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short.

in other words, warriors of life.

feeling sorry for yourself and need a pick me up?

undisgruntle yourself

get comforted

a quiet place to clear your mind 

heavy rain noises

a guided relaxation

talk to someone

thoughts room to get rid of your thoughts

work through some things (helps when people have upset you)

get complimented

plant a few flowers 

tangle things up

cute and calming games 

orisinal games (theyre pretty damn cute)

cat poke

cat planet

wrrrrmz

suishi cat !!!

fishing girl

higher 

can your pet? (tw blood, razors and death)

grey

grow games

feed the head

want to go somewhere but can’t move?

look at the stars

go travelling without moving (best website tbh)

explore the world

secret door

playlists

not today

everyone knows you’re going to live (so might as well start living)

mix for the chronically ill

be strong, honey

allow yourself to be sad 

sick and pissed off

darkest before the dawn

helpful/safe blogs

chronic-illness-support

chronicillnessproblems

pots-gif

spoonieproblems

whatshouldwecallchronicillness

spooniestrong

help explaining it to others 

the spoon theory

understanding someone with chronic pain

what the heck is a spoonie?

spoonie tips #1 - understanding (video)

what is a spoonie? (again but explains different things yeh)

understanding invisible illness - walking in our shoes

how to encourage and understand people living with chronic pain

accessible parking

service animals

10 commandments for interacting with the chronically ill

Don’t tell me I talk about my illness too much. Every movement. Every breath. Is a reminder that I’m not ok. That I may never succeed.That I can’t do things that normal people do. That everyday is a struggle. Never ever tell me I talk about it too much.

#thisisnotaccessibility

Created by the ever-so-fabulous ghostie-pie:

“hello, friends! You have been cordially invited to participate in a sort of movement/project/experiment i’ve devised. I’m calling my initiative #thisisnotaccessibility; the rules are simple. when you’re out and about (especially if you live in a big city, but this can be applicable anywhere), keep your eyes peeled for examples of poorly executed/half-assed/cursory accessibility.

[the word "accessibility”, in this context, simply applies to anything that’s meant to improve the public existence of people with disabilities. it can apply to physical changes made to buildings, transportation, etc., to make them accessible for people who have difficulty with mobility, sight, or hearing. OR it can apply to less tangible resources put in place, such as disability services/IEPs in schools, in order to help those with less clear-cut disabilities, like learning difficulties.]

Whenever you spot an example of lazy “accessibility”, document it. If it’s a poorly placed ramp, photograph it. If it’s a ridiculous policy, write a post about it. Post your findings to whatever social media site(s) you prefer and tag them with #thisisnotaccessibility. You don’t have to be disabled in order to participate in this; in fact, the more able-bodied folks, the merrier. I don’t have an end date for this because i’d like for it to be ongoing.“

Thank you in advance for your participation in this project. It’s time to start a conversation.”

Join the facebook group! Use #thisisnotaccessibility to tag your tumblr/twitter/IG posts! 

START THE CONVERSATION NOW.

https://www.facebook.com/events/1537810176500451/?ref_notif_type=event_mall_comment&source=1

Meet Kelsey Goodwin.

She suffers from constant, intense pain because she has complex regional pain syndrome. She also occasionally loses consciousness when she’s standing because she has postural tachycardia syndrome.

She has at times lost the ability to move her arm or walk.

She’s spent a lot of time in the hospital.

And she says taylorswift has helped her get through it.

“I was so scared of what was to come in my future, but she taught me to be fearless.”

Kelsey hopes to meet Taylor at her concert this weekend, and her best friend has launched a social media campaign to try to catch the star’s attention. Read more: http://bit.ly/1BWP8nq

Spoonie in first year university TIPS!! (please reblog incase someone out there is in need of this or has more tips to add.)

Hi! I wanted to start a little tip thing and update it every time I learn something new. I’m 17 and in my first year of university. I deal with chronic Lyme , fibromyalgia and just a lot of other pain related joint related stuff. They now say I might have ms but waiting for my brain MRI. I’m in constant pain and I have been for 3 years. it first started out in my right wrist, then my right knee , then all my joints and muscles and I get chronic muscle knots. I also deal with cognitive problems such as short term memory loss, brain fog, slurred speech, loss of concentration and few more that I can’t remember right now be they come and go. Everything comes and Go’s. The list goes on. And the story goes on. But I wanted to make an encouragement list for anyone out there that’s also in there first year of university, or in university in general and struggling to get through. Or anyone worried about going into university while being chronically ill. trying to get by on their own. In case you’re wondering my program is computer science which requires a lot of thinking :( , I’m a varsity athlete , I live 9 hours away from home and I live on campus. 


 PRE- 1) CONSIDER TAKING A YEAR OFF FOR TREATMENT OR REST: 

Your Health comes first! Don’t ever let anyone tell you other wise!! I would have taken this chance but I didn’t. I love school and i wanted to take on the challenge. 

1) CHOSE A SMALLER UNIVERSITY, YOU WILL STILL BE GETTING YOUR EDUCATION.. HONESTLY MAYBE THE NAME MATTERS TO SOME PEOPLE, BUT ITS ALL THE SAME LEVEL OF EDUCATION:

At a smaller university, you have access to many more things, your classrooms are smaller so theres a possibility of getting ALL your questions answered in class, theres less stress and more time to book office appointment with your profs with you need help.


 2) YOU MUST ALWAYS FIRST SEEK ACCESSIBILITY HELP REGARDLESS OF YOUR SITUATION: 

 don’t be embarrassed about it, don’t be embarrassed to be put on disability, there there for you and to help you succeed the best you can. Even if you’re undiagnosed you should, still go and explain your undiagnosed process and how you’re still looking for answers. Don’t be rude or demanding . Be kind and gentle. Tell them how scared you are to fail due to your symptoms, how you don’t want to fail, how you don’t want your illness get in the way of your education. Tell them everything! 


2) SIGN UP WITH THE SCHOOL COUNSELLOR!!: 

 Again please don’t be embarrassed, we all need someone we can talk about about our pain, everything we go through, the symptoms we face, and things that lower our moods. If it’s your first time with a counsellor you might hate it, you won’t wanna go, you won’t want your friend knowing, you’ll think it’s a waste of time, your appointments might be 2 weeks apart but PLEASE!! Still do it!!! And talk the best you can. Tell them how you feel and how it affects you. If you’re like me and sometimes you just can’t talk, write down your responses on a piece of paper or your phone then show them. Trust me it doesn’t look bad. The fact that you’re getting help makes you a super human! 


 4) LET YOUR PROFESSORS KNOW!: 

 Some people don’t want anyone one knowing. And don’t want to talk to their profs. It doesn’t make you look dumb but rather a genius because you struggle on a daily basis but you’re doing everything u can to guide you. Professors are surprisingly so much nicer than you’d think. But please don’t use this as a way of lying and getting compassion. Be honest of how you really feel. For me : I really want to be here at school, one doctor of mine told me I should take a year off to get a little better but I’ve loved school since day 1, I got into all universities I applied for! And I picked the smallest one because I know with my symptoms of need help and frequent meetings with my professor. 


 5) DON’T BE AFRAID TO TAKE EXTENSIONS:

 you’re fighting for your life back every single day! The least you do is accept the help offered to you. It won’t make you look dumb.. and you’ll have more time to atleast try to think harder. But please don’t take this as an advantage. But we spoonies are great and we’d never do this right?? Good :) 


 6) REST REST REST!! 

 don’t worry about the parties!! Don’t let your self feel isolated because you can’t go to parties…Instead sleep! Resting is so good for us. Well if your insomnia is not kicking in. Even if it’s just laying down and listening to music. Walking so much is so hard. ALWAYS REST! WHO CARES!


 7) TRY TO LOOK FOR FRIENDS THAT YOU CAN TRUST! 

 I have 2 of them! There’s a Facebook page that always goes around for your university, the summer before school starts where you post introductions and meet others. I met Hailey through there! We’re not in the same program or residence but I messaged her saying hey and now we’re bffs. I met Cassidy when I was on my way to our introduction assembly and she was sitting by self so I said hey and asked her what program she was in then after the assembly since she was only with one other girl I asked them if they wanted to walk arround ! Now we’re best friends! Yes not everyone is good at making friends but being a frosh makes it easier because almost everyone else also doesn’t have friends. Once you think you have great friends tell them about your illness and thank them for being there :) 


 8) PHYSIO PHYSIO PHYSIO!! 

make an appointment with your school physiotherapist.. Tell them everything! End of story ! 

 9) SCHOOL NURSE!! 

same thing goes there!! Tell you wanted to get to know who they were also to describe the symptoms you go through I case anything ever happens. 

 10) REZ SUPERVISOR

 Not everyone has to know but if you’re living on campus tell your Rez supervisor know what you’re going through invade anything ever happens. Because of this she helped rush me to the hospital when I was in an unbearable amount of pain a few weeks ago.

11) TAKE YOUR MEDS!!:

WRITE REMINDERS ON EVERYTHING.. OHMYGOD MY WORST DAYS ARE WHEN I FORGET!! 


 12) IF YOU CAN’T GET YOUR HOMEWORK DONE BECAUSE OF YOUR SYMPTOMS THATS WHERE THE ACCESSIBILITY SERVICES AT YOUR SCHOOL CAN HELP YOU OUT. SO DONT STRESS!! 


13) ALWAYS REMEMBER THAT ITS OKAY TO NOT BE OKAY!

 as spoonies we are given a new way of living, we have to take caution for everything we do. we have a new “normal”. though it is hard to accept at times and it is hard. its there. we have to listen to our bodies. we may put off a show but sometimes we break. we break all the time because we can’t do the things we used to, because we want our lives back. i hate to see people lose  the ability to complete their education because of their illness. and please if you had to leave school because you were ill, always remember that its not your fault. and theres so much more out there for you. maybe you really wanted to study something and maybe one day you will be able to again. as spoonies everything comes with a challenge but we are strong and we can do this. we can fight it and we can help each other stay strong. being a university student and being chronically ill is not fun at all but i can do it. i will not let my illness get in the way of my education. and if one day it does i just have to remember that its okay to not be okay. sometimes we have to stay back for a while to focus more on whats important and thats our health. we are all distinct for greatness even if we can’t see it sometimes , but one day we will. we have to believe in ourselves and we have to believe in the possibility of feeling better one day in the near/far future. one day.

October is Dysautonomia Awareness month, so I am going to bore you all with a little bit of information about it, because you have probably never heard of it, and it is important for those fighting that their disease be known. 
I have Postural Orthostatic Tachycardia Syndrome, or POTS, a form of dysautonomia. It is characterized by an array of debilitating symptoms due to the malfunction, or failing, of the Autonomic Nervous System, and the body’s inability to adjust to gravity (So clearly we should all pick up and move to the moon, haha). In short, anything a healthy body is able to do automatically, such as: digestion, oxygenation, regulation of blood flow and the heart, breathing, and so on, our bodies struggle to do. So little is known about this illness that most of the time when I meet a new doctor, or end up in the emergency room, I have to explain to the doctors what it is. POTS is never diagnosed without another disease, for it is a syndrome caused by the body’s inability to fight off another disease. There is no cure, and little to no treatment, but barely any research is being done. The only way to subside the symptoms is to control what is causing it, if that is even possible because POTS is often caused by other rare diseases. In addition, POTS patients are chemical resistant so limited medications can be taken without severe reactions. Instead POTS continues to break the body down, and before long the patient has a list of diseases to cope with; I have 7, a pretty severe case.
Getting sick changed my life and a cure would be amazing, but it all starts out with just a little bit of awareness. Though POTS is rarely a patients biggest health problem, it makes living a normal day-to-day life very difficult to say the least. If you read this far, thank you, sorry for the super long post. I hope this will help shed some light on all my hospital stays, or if you have ever witnessed one of my countless fainting or seizure episodes (Sorry about that— not my best moments).
Life isn’t always easy, but it is a beautful fight that I will surely win. I definitely could not do it without the help of my wonderful family and friends. If you have any questions feel free to ask, and Happy October!