Here are nine chronic illness survival hacks to help you keep moving forward on your chronic illness journey. Hopefully the following can help others to cope while living with chronic illness. There are important things I try to remind myself of daily, thinga that have helped you get me this far.
Number one: Setting mini goals. Mini goals are simple things for those who are not chronically ill. Getting up and getting dressed is a mini goal, so is eating, tidying etc. Some days these are big goals specially when we are low on our “spoons.” As humans we need to feel like we are accomplishing things. Accomplishments bring us joy, and we feel like we have contributed. We all need to feel like we are contributing.
Number two: The need to create. This is an important part of our existence and experience, we all love to create. History is full of creators. Being creative helps to relive stress, depression and anxiety. Three things that many of us chronically ill warriors face. I love to paint, I lived for painting. Now that I am loosing mobility in my wrist (it’s chronically dislocated) and I am loosing the use of some of my fingers I will start to tape a brush to my hand to be able to continue to paint, there is hope. There is always hope, there is always a way through the pain, the hardship, and the storm that is life.
Number three: Find your purpose. Your purpose is something that keeps you on track mentally. Your purpose could be making others laugh, making music, making YouTube videos, being an activist, being there for your friends, painting, creating, whatever your purpose is, do it. Sometimes we search for our purpose when it’s right in front of us, your purpose could be educating others about your illness. We all have a purpose, we are all of value, we all need to do what feels good for our hearts and minds. Do you know what your purpose is? We all have one and I’m sure yours is amazing and will fill your heart with warmth. A purpose is something that makes life exciting for you, it makes you feel good inside. A true purpose makes you happy, so do what makes you happy.
Number four: Reach out to others when you need help. I used to hate asking for help. Sometimes I still try to not ask for help, but I do it. Prime example is a recently black out, I convulsed for a while and got stuck where I was because I couldn’t use my body. My husband had to pick me up and move me onto the couch. Even though I couldn’t ask for help, he helped me. When we can’t do things ourselves it can be frustrating, or infuriating, but some people are blessed with the gift of being a caregiver. These people are those who are happy and willing to help. Asking for help doesn’t make you less of a person, asking for help takes courage. Please know you don’t do this alone.
Number five: Take each day as it comes. One breath at a time, take life’s challenges in stride. You do not do this alone. Ask for help. Talk about your battles. You can do this. You were strong. You are brave, beautiful soul. Your inner strength surpasses the strength of the physically strong. Continue to believe in you, you are a warrior of the invisible.
Number six: Being grateful. Being grateful is a wonderful tool in learning to move forward. It is easy to get caught up in the negative, all the bad that is happening to us. What are you grateful for today? I remind myself how grateful I am for another breath of life. I have been blessed with the vision to witness random acts of kindness. I am blessed and grateful for all those whom have helped me and helped others, thank you to all those people for making a difference in this cold dark world.
Number seven: Find joy in the simple things. The simple things in life that bring me joy are the ocean, kitty snuggles, moments with friends and family, doing some cosplay. What are things that bring you joy? The things that bring you joy are things that need to be in your life. If it’s watching a cartoon, or crocheting, whatever it is don’t deprive yourself of something that brings you joy. Your happiness matters. Stop telling yourself or others your a burden, would you say that to your friend/lived one!
Number eight: Live life with hope. Live life well you’ve got it, do the best you can with what you have. Never give up on you. Believe in yourself always. I will always hold hope in my heart for all my fellow invisible illness warriors. I never give up, hope will live in me forever. Hopelessness cannot exist where there is hope. For where there is hope hopelessness cannot enter.
Number nine: Live truly in the moment. Living in today is vital. If we obsess over tomorrow and the tragedies that await us it steals all joy and hope from today. Our peace of mind is robbed, and we are left in disparity. Don’t look into yesterday it’s a memory, and tomorrow is the unknown, living today means clearing your mind of the days past and those to come. Thinking about other things distracts us from today and the gifts it brings, today is truly the present. Live in today for today be open to its gifts.
The ache of the insidious pains invisible illness brings, helps us to unite together in chronic pain. Being united helps us find our invisible demons together we are strong. I always remind myself that for all we go through we are sure a strong bunch. Rare disease, chronic disease, and invisible disease we are united in our illness send in our fight. We are not alone in anything that we go through. Every challenge we face makes us stronger and makes us braver.
Many times in life things do not go as we have planned. Remember to continue to carry-on. Take life a day at a time. Live from one moment to the next. Always remember how far you have come, and remember to never give up on yourself. I cannot change my diseases, I accept them for what they are for what they have done to me and for what they will do to me. This does not mean I quit, I will continue to live life to the best of my ability.
I remain hopeful now and forever.
Dont forget I am shaving my head on August 31st to help raise awareness for a Ehlers-Danlos Syndrome. Learn more about it here https://annawerrunblog.wordpress.com/2017/08/13/shaving-my-head-for-ehlers-danlos-syndrome-awareness/