I feel alone in this battle constantly.
I just don’t understand people anymore.
Which isn’t their fault, because I don’t know that I could’ve really understood before becoming sick myself.
I’m not a part of their world anymore, to incorporate some Disney movie magic, which I try to do as often as possible when I write and in daily life (“Part of Your World” is a song from The Little Mermaid).
I truly believe there’s a fundamental gap in experience that can’t be closed even by the best of explanations; you have to experience the pain yourself, and you have to experience it non-stop, for years on end, to really “get it.” It’s not just being around other people causing the feeling of isolation, either.
It makes you feel as if there’s no reason to try anymore and that you might as well just get used to the idea of being alone forever.
I’m the only one who feels the pain.
Even though loneliness is, by definition, exclusive, we can find unity in knowing we’ve all felt excluded because of being chronically ill. We may not understand each other’s pain exactly, because every case, every person, is unique.
I hate knowing other people struggle like I do.
But I feel like our stories are important and need to be shared.
I feel alone in this battle constantly.
part-time, temporary and/or flexible positions that allow you to earn some extra money without requiring you to commit to the demands of a full-time job. If you’re receiving disability benefits and aren’t able to earn over a certain amount, go through ups and downs with your health, are homebound due to your illness but still want to work a few hours a week, or are looking to beef up your resume while you’re temporarily out of the workforce, a remote side job can be a great option.
To help you in your job search, we’ve identified 10 companies currently hiring remote workers for part-time, freelance, temporary or flexible positions.
You can search remote offerings here.
As a “mod” for ModSquad, you’ll help provide support to brands’ digital presence, including customer support, comment moderation and online engagement.
Apply for a position as a moderator here.
You can search job offerings here.
You can apply for a position as an online teacher here.
After being diagnosed with chronic illness I have a new appreciation for the little things in life; here are a few things I have learned to appreciate along this journey.
There are days when chronic illness consumes your life, and on days when I feel up to going out in public, I am thankful for makeup.
There are some days I don’t have the energy or ability to cook, and it’s made me appreciate the days where I am able to even more.
But, it still makes me feel like I have accomplished something.
He has helped me more than I could ever put into words and I know I am truly blessed to be able to have him for my doctor.
There are some days and weeks where I am bedridden, and having a clean comfortable bed is essential for me.
There are days where I can’t go to gym at all, and days where I push myself to go but can’t finish my reps and have to sit and rest, but I appreciate the gym so much.
I have lost almost all of my friends since I became ill, so the two or three I have now are very loved.
There are weeks where I go without any human contact (except for my husband), so having one or two people call or text me makes my whole day.
I have learned to never take a good day for granted, to celebrate life’s little blessings, and no matter how bad your day is, there’s always something to be thankful for.
More than 4 million elementary school-aged children in the U.S. have a chronic illness, and 25 percent of them miss more than one week of school each year because of their condition. These intermittent school absences make it difficult for children to fully participate in their classes; process information and learn; and make friends and navigate social situations. The burden of making it easier for children to cope with all these impacts of chronic illnesses falls heavily on parents.
• How will my child’s school support him/her?
Because the missed days from school can create obstacles to learning and get in the way of establishing friendships, a child with a chronic illness may suffer behavioral, emotional and social adjustment problems in school. But educational accommodations, such as unlimited bathroom breaks or extra time on tests, can help a child better manage the effects of his or her chronic illness at school.
Laura, whose daughter has cystic fibrosis, attests to how valuable these extraordinary measures are.
Then, develop a checklist of actions that you, your child’s teacher and your child will take during such absences.
A purse or backpack is more than just a place to throw your debit card and keys when you live with chronic health challenges.
“This is my brand new survival bag ‘Rex.’ He comes everywhere with me along with my water bottle.
Meds I need for at least a day.
Inside are cough drops (fighting a chest cold that is going on three weeks), a caffeine pill (fatigue after not sleeping.
“Sunglasses, tissues, chapstick, Epipen, inhaler, antihistamine rye drops.
A wallet, syringe for flush, nausea meds, extra tube pads, a wet-to-dry bag for dirty tube pads, extra formula, extra feed bag, tape and gauze.” — Elisabeth W. 9.
“My bag has my inhaler, pain pill bottle with ibuprofen and Tylenol and anti-diarrhea meds because my chemo pills are hard on my stomach.
I have small items like chapstick and eye drops for dry eyes/lips, gum, sunglasses to help prevent migraines, nail clippers, a headband and extra hair ties.
I make sure to have all the medications I could possibly need – my daily meds as well as emergency painkillers.
Depending on my symptoms and plans for the day, I may also carry Band-Aids, an Ace bandage, and a bag of emergency medical supplies: gauze pads, Q-tips, alcohol swabs, my steroid creams, lidocaine gel, etc.