Your self-directed employment assistant

Work Life Balance Living with a Chronic Illness

I was born with a condition called mitochondria myopathy, a condition called that tires my muscles easily and feels like everyday I run a marathon. I have to really conserve my energy as some days I wake up and have 60% energy and other days I have only 40% energy. I am only able to work part time because of it. Then compounding that I was in a car accident in which I developed dystonia, a movement disorder that causes involuntary muscle spasms and movements. There is no cure for either condition sadly. Sometimes, I wish my body would get a break.

My body is constantly tired from the spasms and the mitochondria cells not working correctly. This means I really need to listen and care for my body. Although anyone who knows me well knows I am an extroverted high energy person who likes to be involved and has her hands involved with 20 activities at the same time. For me to describe what I do professionally, it takes about two paragraphs to write out. So the big question is how does somehow living with a chronic illness take balance work and life? Well I am still struggling with that but I will give you some tips that I have found useful and I hope that for those dealing with any type of disability, pain, or condition that you can relate, use, or put into practice as you juggle work and living.

  1. Sleep and REST- Get good sleep. Try to get good sleep. This is critical. Also finding space in your day to just rest. Not necessarily take a nap. If that is what your body needs, do it, but rest. Be at peace with just resting and being still. Not doing anything. It is okay with just resting your body.
  2. Medications- I know many people with disabilities and chronic illness have to take medications. Be on top of it and use pill containers or baggies. Get an app on your phone to help remind yourself to take your medications.
  3. Meditate-Take time to breathe. There are some great meditation apps. I like CALM and HEADSPACE. They have free versions and versions where you pay a monthly or yearly rate. I use HEADSPACE and love it. It helps me fall asleep and ease some of the pain. It has been great to take the edge off.
  4. Do what you love-Work can be stressful. Find a hobby. For me, I work in theatre, but I also love theatre and seeing shows is my hobby. I also scrapbook and it is enjoying and relaxing to me.
  5. Stay organized-Keep track of your appointments with a planner or google calendar. I have found both to be helpful for me.
  6. Self care-Take some time for YOU. You are important. DO some self-care whatever that looks like for you.
  7. Learn to say no.-You can’t do it all. This is a hard one for me. However, learn what it important to you and and say no to what is not important so you are taking care of yourself.

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Comment by Adrienne Kleinman on October 30, 2018 at 4:40am

Thank you for sharing this insight, Nikki. I am someone who never knows when to say no or slow down--thank you for the gentle reminder :) 

Comment by Sammy Abeje on October 27, 2018 at 9:10pm

I really appreciate this advice, I tend to try and fit as much as possible into one day.  I definitely need to work spreading out my workload!

Comment by Great Lakes ADA Center on October 26, 2018 at 1:11pm

Thanks Nikki for sharing. I think this is critical advice for those living with disabilities and chronic illness, but actually pretty good advice for everyone!

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