Getting motivated is hard with chronic disease

Accountability. We hear that word frequently in our lives, personal and professional, as we want to be able to meaningfully track effort put into daily tasks and resolutions. I follow pages on Facebook where we ask each other to be accountable for our diet, our exercise, our engagement with the world on moral issues and concerns. Behind those actions, though, those of us with chronic diseases struggle to maintain just the semblance of normality in our lives, let alone to meet accountability goals.

This blog is part of my determination to be accountable, to get out of bed every day with at least this one goal in mind: write and share, participate and reach out. Our world is such a fragmented place, but I’ve found such connections in Facebook groups, in my Thursday morning women’s Bible study, in my participation in performing with the Loudoun Chorale.

Let me share a bit about me so you can understand why I’m struggling to be accountable, to participate, to engage other people. I’m a 44-year-old woman who happens to have rheumatoid arthritis, Raynaud’s phenomenon, autoimmune hepatitis and pyoderma gangrenosum – all autoimmune diseases. I nearly died from sepsis in 2012. I lost my mother to pancreatic cancer at the age of 68 in 2014 after six months of caring for her in her terminal diagnosis. I no longer work because stress aggravates my autoimmune disease, so I look for other ways to engage in the community, to give my life some shape outside my husband and 11-year-old son. I used to be a firefighter/EMT. I used to work on the CCU of a local hospital as a technician. I used to work as a reporter and photographer in print news and tried my hand at being an assignment desk editor in television news. I miss work. I miss engaging in professional development and training.

This is what people find out with multiple autoimmune diagnoses. Life changes. The more I tried to maintain “normality” in my life, the sicker I got. I struggled just to keep up with my house and my child. When I overdid, it left me unable to move at all for several days. I ended up with sepsis. My pyoderma flared up and I had to go back on high dose prednisone. The emotional stress of caring for my mother set me back in my attempts to get everything under control. I wanted life to be normal again.

Like everyone, I’m finding out there is no normal. There is no fixed way to approach life in a cookie-cutter fashion. I can’t work, especially when volunteering started making  me sick again. I have to be strict with myself about what I choose to take on.

But I am CHOOSING this – to write, to connect, to find others who can’t make everyone else’s normal work for them. To find people caught up in the day-to-day struggles of life and assure them that they are not alone. One good thing about social media is the ability to connect with others we would never find any other way.

My way is not the only way, but it is the way I am choosing to go right now. In life, there is no one right way that everyone can follow. I choose to be a mom, to be a Bible study teacher, to volunteer with my son’s Boy Scout Troop, to sing and perform with other music lovers, to reach out.

What is your choice today? What is your struggle? Sometimes we feel so alone, but in many cases we aren’t alone at all if we just reach out and say hello to someone.

This is my “Hello!” to you. My invitation to stop and chat a while. Let me know what is going on in your life. Let me know what your struggles are. We can sink when we are not engaged and accountable even to one other person. I’m choosing to swim. Don’t you want to come along?


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