Lupus: Feeling Overwhelmed. Learning how to manage!

I felt overwhelmed this morning. 

Not like, "I can't cope and all I want to do is crawl in a hole" overwhelmed. Just struggling to get my day started. 

I had a ton of things I wanted to accomplish, but I I didn't know where to start. The tasks du jour were swirling around in my head, growing bigger and more complex with every moment. It felt like I had hours of work ahead of me, because I was picturing them as one large, looming mountain of tasks, accumulating into three days' worth of work. With my naptime just hours away, I couldn't even manage the thought of beginning with no end in sight! 

But I knew I was going about it all wrong. I needed to get out of my head, and put my thoughts onto paper.  That "mountain" was just begging to be broken down into manageable, bite-sized pieces! 

I began writing down each task, and assigning an approximate time to completion (e.g. Blog post - 25 min). It's a routine exercise I do several times a week. But, interestingly, once I let feelings of inundation and overburden take over this morning, it was very difficult for me to find my way back to center. Tells you how we can think ourselves into a lot of turmoil! 

With a complete task list in hand, I saw clearly that most of my tasks were, indeed, manageable. Some wouldn't take much time at all! 

I've learned to approach these types of lists in several different ways. I could choose a Dave Ramsey Debt Snowball maneuver, and pick the task that would take the least amount of time, to get my momentum going. 

Or I could tackle the one I wanted to accomplish the most. 

Or the one that had been on my list the longest. 

Or some combination of the above. 

Whatever strategy I chose for this particular to-do list, the fact that this post exists tells you that at least 25 min of my morning was spent productively! 

I remember feeling overwhelmed and overburdened much this same way with lupus. There were so many factors to consider when assessing my disease activity. I was grappling with symptoms like fatigue, joint pain, swelling, fever, rashes, GI upset, angioedema, hair loss, and organ involvement - just to name a few. I had medications to juggle, side-effects to sort out, and lifestyle factors to consider. I desperately wanted to do something to positively impact my disease. I knew there were steps I could take to figure out was working, and what wasn't. But I didn't know where to start. The "mountain" of issues was just too big. 

So in much the same way as my to-do list above, I chose to break down lupus and its adverse effects into smaller, more manageable chunks. . 

I chose a list form - which came to be known as my Chronic Control Spreadsheet. It was a simple Excel spreadsheet where I tracked the severity and frequency of symptoms, the occurrence of side-effects, and the effectiveness of medicines. I could jot down my lifestyle factors, like work, travel, and exercise, to see how or if they correlated to my disease activity (which they did!) 

I didn't have to focus on everything all at once. Rather, once the list was created, I could pick one aspect to focus on - to see how I could improve that one area of lupus. 

Take hair loss, for instance. I remember waking up one morning and deciding that enough was enough. I was losing too much hair, and I wanted to explore ways to improve it. 

I looked to home strategies first. I changed to a satin pillowcase, which helped tremendously. Not only did I lose less hair overnight, it was a huge emotional boost to wake up and not have a pillowcase full of hair! 

Next, I changed up my hair washing routine, experimented with new products, and altered my hairstyle. Then, I made small investments to make things better - new hair accessories to help with my thinner hair, and cute hats so the loss wouldn't be so noticeable. 

(Note - I would often resist spending money to adapt to a change that lupus had brought on. But sometimes, relieving yourself of the temporary burden is the best medicine!) 

At the same time I employed the strategies above, I consulted a dermatologist. He was able to help, not only with hair growth remedies, but also timelines, expectations, and progress reports. 

I hit my hair loss from every direction I could think of, and I tracked my progress on my Chronic Control Spreadsheet. It felt so good to be doing something! I was actively trying to make my situation better, and my efforts were paying off.  Physically, the hair loss was improving. Emotionally, I was able to view the loss in a healthier, more analytical way. I still didn't like it. But I knew I was doing everything I could to improve the outcome. It was a small piece of the lupus puzzle that I could attempt to manage for once. 

I started making all kinds of changes and connections based on the results of my Chronic Control tracking. It was wonderful to see how I could actually change the trajectory of my illness - like taking a nap to stave off fatigue, or changing up the time I took a mediation in order to maximize its benefit. We all deserve to assert ourselves in the face of lupus. Even if it's one step at a time!


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