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 ┬áme 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?


Starting is the hardest step

Maybe I haven’t had the chance to think this through, but putting part of your life up on the blogosphere seems slightly ridiculous – as if anyone really cares deeply about your personal life, likes, dislikes and problems as much as those people you talk to every day do. But I’m starting because of something my mother made very apparent to me in her sermon at church the other day. We are a community that shares and that testifies as to what we believe or we are not Christians and not living as Jesus Christ wanted us to live.

I have faith and I have a life with so much to share, to hope that I can help educate other people about those things I’ve learned about and to listen when others have problems I hope I can help solve. I hope there are people out there to teach me more than I know and that I’m smart enough to recognize them. I want to put my faith in doing the right thing out here on the line and act on it.

So this is the first step, the introduction, the prologue to the events of the past couple years that seem to have shaped where I am today. Whether the incredibly ironic drama inspires someone else to actively advocate for themselves and try to find solutions to the problems they have or whether people ignore it and figuratively walk away from what I have to say does matter to me, but people make choices and have to live with them.

I’m just hoping that my choices are the right ones, that they are inspired by Christ and his example. Otherwise, I’m not swimming; I’m sinking and that is not acceptable. I’ve laughed so I won’t cry, and I’ve cried when I just could not laugh anymore. That’s when I’ve reached down and sought my faith, and I’ve prayed like I never thought I’d ever pray, especially when I was younger and more cynical about my faith. Strength is not in denying; strength is in seeking and asking for help when you feel you just cannot go on any longer doing what you are doing.

So, who wants to come swimming with me? Look for more later, when I can begin to truly organize my thoughts about where my initial diagnosis with rheumatoid arthritis led me and the ongoing fight with three separate diagnoses that I know of at this time. Three autoimmune diseases sounds like a bad joke, but I’m still laughing. There’s no time to cry, just time to keep moving and keep living.

That’s what this whole experience is about – living and loving and laughing despite the pain and believing that there is some meaning in how I go about it. There’s a plan, even if I don’t know it. I just pray and breathe and move.