It’s fucked up that people with disabilities have to feel guilty about wanting more than the bare minimum.
Yes, I receive subsidised housing but apparently it’s too much to ask for that housing to also be safe and comfortable. I shouldn’t have to feel guilty about that.
Yes, I receive a disability pension but being disabled is expensive just to survive. Is it too much to ask for a little extra so I don’t have to decide between eating and going to the doctors or not having to reuse medical equipment and risking serious illness and being able to do something fun with my friends? And you may think “Why would you risk that? That’s fucking stupid.”
Well yes, it is. But there comes a point where you realise your life is more than just surviving and you deserve nice things and you deserve to be safe and comfortable. You feel inherently guilty about wanting the absolute bare minimum and there is no support to help you get more than that.
So sometimes you make stupid, dangerous decisions to make yourself feel a little bit better as a break from just having to survive day to day which is fucking exhausting because without it, you might just top yourself.
Disabled people deserve to be comfortable, safe, to have fun, to have more than the bare minimum and not have to make stupid, potentially life threatening decisions to achieve any of this.
We certainly shouldn’t be made to feel guilty about wanting any of this.
2K notes · View notes
How to study with a chronic illness and not kill yourself in the attempt
Hello my dear spoonies! It's been a while since the last time I wrote, I’ve been busy dying and not-dying lately, but I am so much better now! *cries in fetal position*
I have so much to tell you, but today I want to focus on study issues. I have not been to attend college for eight months now because of my illnesses, but tomorrow I'm going to start a new semester. I’m obviously very scared, when you don’t study for so long because you weren’t healthy enought makes you feel worried, you're afraid of becoming sicker and having to quit again.
But I made a little guide for myself so as to prevent this from happening. I want to share it as it may help someone.
Before I start I want to clarify that I have endometriosis, several spinal problems that make my joints hurt a lot and my gastrointestinal system doesn’t know how to function. Seriously. So what has been useful to me may or may not help you. Some may need more, some may need less. But I will try to make this as general as possible, hopefully something could be useful to you!
Don’t leave home without having breakfast.
By this I don’t mean that you have to eat three loaves, six eggs and a liter of coffee, eat something that makes you feel safe, eat something that you know your body can tolerate well. Leaving home without eating anything is going to make you have low blood sugar and will lower your blood pressure if you are susceptible to this. If you don’t feel well enough for breakfast, try having healthy snacks during class time.
Make good use of class time.
When you go back to your house you may need to rest a lot. Some will be able to take more advantage of the rest of the day than others, but if you know beforehand that you wont be able to, use your time in class well and don’t get zoned. If the class is slow you can try to advance on the material. Do not forget to keep a good posture while sitting.
Squeeze every second you feel good.
Rest in the recess.
Some class breaks are longer than others. The important thing is that you use this time to give your body or brain a break. If you need to close your eyes for a while, do it, if you need to stay in the classroom seated, do it. If they don’t let you stay in the classroom, talk to the teachers, don’t be embarrassed to explain your situation.
If you have spinal problems, use this time to get up and walk a little. The vertebral discs get compressed when seated and they rise when we return to stretch. This will avoid back pain and even some joints pain. Keep a good posture while sitting!!
Bring your meds.
If you need to take medicine, take them. If you need your painkillers, take them. It’s not a shame to take pills in front of others, you know your body and what you need, and your health comes first. Don’t think what others will say, you don’t need it and will only generate anxiety. If you are embarrassed that someone might ask, you can literally answer that you don’t want to talk about it, but that your medicines make you feel good. Your health is only your business.
This speaks for itself. Drink lots of water! Especially if you drink a lot of coffee like me. Oh, and avoid the energy drinks.
Relax when you get home.
You do not have to go back and immediately sit down to study while you choke on lunch/dinner (haha, choke, sorry I’m five). Take a bath, put on comfortable clothes, do your back exercises if you have to, rest for a while in bed and apply hot or cold pads where it hurts if needed. If you've been sitting in class for a long time, I seriously recommend to do a little stretch for your back when you get home, it can make a difference (do it or I will kick you ಠ_ಠ).
Understand that there are different ways to study and that you have to find the most suitable for you. For example, for some it will be better to take the reading material to bed and read lying down, and this is ok. Always make sure you are comfortable, and if you are sitting keep a good posture ( ͡° ͜ʖ ͡°).
Use ranges of 20/10 or 40/20 minutes, study, rest. Do not overload yourself, but try to keep up with the class. This will be very useful for when you need to take a day off or during finals. Studying a little every day is going to be a lot healthier for you, and less stressful, than doing it all in a week.
Do not forget that there are many resources, not just books. If you don’t feel well to read or do exercises you can watch educational videos while you rest your body. Read things to understand not to memorize. Use colors to make it easier for you to remember information. If you feel stuck in one chapter, move on to the next or review the previous one. Don’t stress or compare yourself to anyone. If a subject is difficult for you, you aren’t stupid, it’s only a subject that is more difficult to you, as it happens to everyone. It's okay to ask for help.
Know when to stop.
This I think is the most important part. Recognize when you feel bad. Take a day off if you're sick, it's okay to skip a class. Don’t compete with others or compare yourself, your situation is different. Identify how much you can do, recognize it. Don’t think that your old self could have taken five classes and today you can only take three, two or one. Your past self is in the past. Work with who you are today and move on from there. If you can only take one class today, that's fine. Time will go on the same, whether you do that subject or not. Don’t give up just because you have to take it slow, feel proud that you are strong enough to be where you are today.
You are valuable, you are intelligent and you will be a great professional.
┬┴┬┴┤ ͜ʖ ͡°) ├┬┴┬┴ And if you don’t strecht I will hunt you down.
1K notes · View notes
The things you’ve been wanting to hear but that no one will tell you because they don’t realize how difficult a chronic condition can be:
It’s so hard. Damn, girl, it must be so difficult trying to coordinate 5+ different doctors’ appointments with a full-time job. Do you have benefits? Do you get paid sick days or time off? That sucks that you have to leave work unpaid just to be able to take care of your health, and that it consumes entire days.
You relocated to a new city and have to find an entire new team of doctors? That must be frustrating and difficult, especially since the relationships you built with your former doctors were important. I know you don’t just rely on doctors for prescriptions but also for emotional support. You’ve had the same rheumatologist since Day 1 of the conversation about rheumatoid arthritis, and she’s been awesome with you every step of the way. It must be hard to have to say goodbye to someone you trust and appreciate as your doctor and start over from scratch with unfamiliar faces. Not only do you have to worry about whether these new doctors will even take your insurance... but will they know what they’re talking about? Will you trust them? Will they listen to you? Will you like them or will you dread these time-consuming, frequent visits even more than you already do, which shouldn’t be necessary?
Hey, nobody really understands what you’re going through. People want to be there for you. (Do they?)
You’re so strong for handling all this!!!!! It can’t be easy. And it’s okay if you’re upset or frustrated or impatient or stressed or angry. You’re going through a lot, and these are normal feelings. It’s normal to feel frustrated since nobody will really understand unless they also have a chronic health condition. It’s normal to feel isolated because you’re 23 and sometimes feel like you’re 70 with all the doctor appointments you need to make, and meanwhile your 23 year old friends are drinking and partying next door without a worry. It’s normal to feel angry when doctors’ visits consume entire days of your week, because you’re ambitious and busy and have things to be doing other than sitting in offices waiting for another new stranger to bark at you about insurance policies. It’s normal to worry about romantic relationships, because who will want to have to deal with this crap and your days of feeling low when shit hits the fan?
You’re a lioness. You handle all of these hurdles with such grace (at least 70% of the time). You work hard, bring light into a room, tear up a dance floor, and get shit done. On top of this shit!!!!!!
It’s okay to be sad about it sometimes. You try so hard to stay strong.
You’re strong!! You’re awesome!! You got this girl and I’m here for you if you ever want to talk or vent or have supportive company!!!! (omg can you imagine if people could be empathetic enough to say that to me)
922 notes · View notes