Bullet points from the Live Q&A recorded August 24, 2017 for the UnChargeables chronic illness community site.
A questionaire was sent out to the Spoonies4Life/Unchargables community forum regarding the most difficult challenges in finding a new normal with chronic illness. Below are the responses to the answers I received.
Most mentioned Triggers-
Sleep, Diet & Stress
Tips for sleep-
1- If you are tired and you are able to lay down- DO IT! There is ZERO guilt in resting when you need to. You fight a chronic illness, your body goes through more than the average person.
2- You have to be your body’s friend! If you CAN rest- DO SO. Don’t feel guilty for resting!
3- If you can’t rest, PACE YOURSELF. Don’t wear yourself out more than you have to.
4- Listen to your body’s whispers so you don’t have to hear it scream
5- Turn your mind off! The mind and the body work together. When your mind isn’t resting neither is your body!
(Helpful tip- Keep a notepad by your bed to write down things you can handle LATER)
6- Set a bedtime schedule. Lay down at the same time every night to get your body in a routine. Even if you can’t sleep, at least you are resting.
1- Keep a JOURNAL. Put your puzzle pieces together. Keep track of what is going into your body. Is something you are eating or drinking making your condition worse?
(Example of one here- Peace by Piece 365 Day Inspirational Journal)
2- Try different diets. Don’t be afraid to find what is best for you! There are thousands of different diets!
3- Avoid any food sensitivities or allergies! No food is worth extra pain.
4- Get tested for food allergies if they are impacting you!
1- Eliminate as many negative sources as possible.
Negative people, situations, thoughts. Get away from them if at all possible!
Stress makes pain worse.
2- Do ONE THING every day that you enjoy. Every day is not going to be a good day, BUT you can have one good thing in every day. Do something you enjoy every single day of your life. Even little things like taking a bath or lighting a candle can make a difference.
Life is hard- you have to MAKE an effort to appreciate the little things.
A year ago I was working two jobs and in school full time. My health fell apart. In a matter of 24 hours, I fell back into an infant state and wasn’t able to feed, bath or take care of myself. I was on death’s door. I fell from grace. Life absolutely fell apart.
I understand how hard it is to find a new normal.
Acceptance and Action.
1- You HAVE to accept where you are at in life RIGHT NOW. It doesn’t mean things will always be this way, but your situation right now is where you are at.
You have to accept what you can’t change but use action to change what you can.
2- Accept YOURSELF for who you are NOW. You cannot change what has happened to you, but you CAN change how you react to it. Becoming angry and bitter will not help you heal.
It is OK to feel these emotions. But let the feelings GO. Don’t harbor bad emotions.
It isn’t fair. Life is hard. Sickness sucks- we have to accept these things. It’s okay to feel emotions but DON’T let yourself stay in the negative mindset forever.
Keep moving FORWARD.
Chronic illness can change you for the better.
3-Accept the person you see in the mirror. You are a strong chronic illness warrior.
You may not be what you wanna be- but you are doing your best!
4- Celebrate your small victories!
(Example- After six months of physical therapy I can put pants on, for some people that’s not a victory- for me IT IS!)
5- Accept help- from people, doctors and medications/treatment.
Bittersweet blessing- Having people that are WILLING TO HELP, even if you don’t want to accept help.
6- Accept your limitations. There is nothing wrong with pacing yourself and doing what is best for YOUR body.
7- Don’t compare yourself to others. You are running a difference race. You are in a different lane. Every one doesn’t walk the same road. Accept the challenges that you are facing and don’t compare yourself to other people. Your life is yours. You have to do what is best for you.
8- Don’t hate yourself if you need medication. It doesn’t make you a weak person if you need medication!
1- Own what you CAN control.
Self care! You can control your self care!
Rest as much as possible.
Get decent amounts of sleep.
Eat the best diet for you.
Hydrate your body.
Ask for help if you need it.
Keep a journal.
Self care is IMPERATIVE.
DO WHAT WORKS FOR YOU!
Never stop fighting for your quality of life.
Explore every option possible. Natural remedies, medications, treatments, physical therapy, diets, etc. There are a thousand options!!!
“It’s not the amount of years in your life, it’s the amount of life in your years.”
Do one thing every day that makes you smile. That’s what this life is about!
It won’t matter how many cars you had or how many awards you won- in the end what matters is how you treated other people and the life experiences you gained.
You STILL matter. Your life MATTERS!
Never give up.
Wishing everyone hope and healing.
All content and images used on this site are owned or licensed by Winslow E. Dixon. Unauthorized reproduction is prohibited. (Feel free to share stories and save images, however all images, written posts and blogs are owned by Winslow E. Dixon and protected under copyright law)