I’ve written and rewritten this blog post more than a dozen times in the last few weeks. I keep going back and forth on what to say or whether or not I want to say anything.

I recently read Writing With Chronic Illness by Kristine Kathryn Rusch after having read her blog posts on the same topic. (You can find them HERE, HERE, and HERE) A lot of things in that book resonated with me. One thing she talks about is her priorities.

Her list goes:

1. Family

2. Health

3. Writing

She talks about having to get up every day and constantly revaluate what she can and can’t do. If it’s and good day then she can do X, Y, and Z. If it’s not a good day then she knows she’s only going to be able to do X and if she’s lucky she might at least get started on Y.

For over ten years I struggled with declining health. I went to a lot of doctors especially in the beginning. I ended up with six figures worth of medical bills. What I didn’t get out of those doctor’s visits was a diagnosis. Instead I had doctors tell me time and time again that there was nothing wrong with me. Or tell me was just depressed and should see a shrink. A few even accused me of being a pill seeker, which is funny because I hate taking pills of any kind and prefer natural medicines to pharmaceuticals.

But durning what my husband and I now refer to as the dark years, I applied a lot of the same techniques she talks about in her book. When I felt good I tried to do as much as I could knowing it wasn’t going to last. And by feel good I mean my pain level was only a six instead of an eight or that my inflammation was down enough that I could actually wear shoes. Of course the inflammation issue also effected my breathing, leaving me short of breath and coughing all the time. Not to mention the constant headaches and migraines. Oh and let’s not forget the extreme fatigue and brain fog.

I think the fatigue was the one that bothered me the most. Not necessarily physically but mentally. Doctors kept telling me there was nothing wrong with me yet I would have weeks where I was lucky to be able to stay away more than four hours a day. Then I would have weeks when I was lucky to be able to sleep four hours a night. I had a cough that would not go away and once I started gaining weight it all got worse.

Then my sibling was diagnosed with a rare genetic condition. I was told I needed to be tested since it was likely that I had it as well. When the test came back positive I cried. Not because I have this rare condition that there’s degenerative and there’s no cure for, but because I finally had a diagnosis. I had something to finally fight against. I began educating myself and learned things to avoid and things to try.

I finally had something I could learn to manage.

And that’s what I’ve done. Over the last year I’ve learned to manage my condition. I still have set backs and I still have days when no matter what I do I end up battling the extreme fatigue or shortness of breath. But those days are fewer and further between. After reading, Writing With Chronic Illness, I sat down and I wrote out my own list.

Here’s mine:
1. Health

2. Move

3. Family

4. Writing

Some might have expected writing to be higher up in the list. But as I’ve gotten healthier, as I’ve been able to enjoy life a bit more, I’ve realized that I want to enjoy it as long as I can. In order to do that my health has to come first. I have to take care of me before anything else.

The move is second because it’s really our priority right now, especially since summer has arrived and the heat and humidity are hard for me to deal with. Walking out to the mailbox in this heat leaves me out of breath and our mailbox is at the end of our drive which is only two car lengths long.

Family is third because I’ve lost too many people in the last ten years and I know how important it is to spend time with those you love. You can never get that missed time back. When I say family I’m not necessarily talking about those who are related to me through blood or marriage. I’m talking about those people who support you, who love you unconditionally, those people who always have your back. That’s what family is, at least to me.

Writing is fourth on the list. While writing is important to me and it’s something I enjoy and plan to do for the rest of my life, I also know it can easily end up taking over my life. The first time around I would write for ten hours a day, seven days a week. Everything in my life revolved around writing and publishing. After five years I hit a wall. Writing wasn’t fun and hadn’t been in quiet a long time. Not only had I lost the enjoyment of writing, but I also lost the enjoyment in reading. I had reached a point where I was burnt out. It also happened to be right around that time that my health got notably worse. And so with a heavy heart I walked away from the career I had dreamed about since I was a kid.

When I made the decision to begin publishing again I made myself a promise. I would write only so long as I enjoyed it and I would not let it consume me. I would set limitations and I would find that work/life balance that I was seriously lacking the first time.

Then I got diagnosed and I started feeling better. The brain fog began to clear, my pain levels began to drop, and I started losing weight. And so no matter what I had been telling myself I jumped back into writing full tilt and within a few months I had hit a wall. My health took a hit and I gained back some of the weight I had lost and I had my first migraine in months. So I slowed down and I made a few more changes to my environment. And before too long I was right back at it pushing myself again. I was trying to do too much and each time I succeeded in being able to write longer, write more words, get more boxes packed, go through one more box than yesterday I looked at it as a win. Proof I was getting better.

And then my body would step up to remind me that I’m not healthy and I’ll never be healthy. I’m healthier than I was a year and a half ago. I’m healthier than I was a month ago. But I have a chronic condition. There is no cure, no remission, no magic surgery that will fix it. This is something I will have to live with for the rest of my life. Something that will continue to get worse with each passing year. It’s something that will have to factor into every choice I make, every day.

So while writing is a priority, it can’t be my top priority. I am serious about my writing and I will always strive to improve with each book I write. I will never release a book that I don’t feel good about. If I’m going to put my name on it then you can guarantee that it’s the best book I can write at that point in my life. But as passionate as I am about writing and as much as I love it and am dedicated to my career, there are other things that will always take priority.

These days I’m trying to do better about listening to my body. I take more naps know than I did as a kid. Or at least it feels that way sometimes. But if I don’t then I know I’m going to pay for it later.

Every morning I get up and take my CBD oil and then I check my air quality app to see if I need to wear a mask when I take the dog out or not. If the pollen is high then I have to mask up or else I’m going to have trouble breathing. Then I check the weather app to see how hot and humid it is to know if opening the door and stepping outside is going to steal my breath or not.

In almost everything I do I have to factor in my condition. And as long as I do then I have a better chance of staying healthier for longer. And that’s the goal.

Because no matter how much I wish it wasn’t true, I have a chronic condition and ignoring it won’t make it go away. Instead, I’ve chosen to make changes and be vigilant without letting it stop me from living.