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Lately I’ve been noticing that I’m having a difficult time remembering information–dates, where i put things, tasks–and I’m a teacher! I’d write my to do list and lose it, commit to completing a task and forget its due date. Oh! Forget about the professional development meetings where I’d be asked to reflect on a lesson and have such a hard time remembering what I even taught! At first these occurrences seemed sporadic, then suddenly they became more and more frequent. I would laugh them off to hide the embarrassment, and in the back of my mind question what was happening to me.
During my next doctor visit, I casually mentioned my concern to my rheumatologist and the response that she gave me only stirred up a number of questions. She claimed that difficulty with memory was common among Lupus patients and was called “Lupus Fog”. 4 years with this disease and I’d NEVER heard of this fog thing so you KNOW the questions were pouring! What is it? What are the symptoms? Are there treatment options? Is it progressive?????? I learned that Lupus Fog is actually the term that references cognitive impairments that appear in patients with Lupus. These impairments, unfortunately, aren’t limited to memory. They also include issues with concentration, confusion, and difficulty expressing oneself. All of the pieces were slowly coming together and my doctor’s synopsis made perfect sense to me! I was exhibiting all of these symptoms! There would be moments when I’d start a sentence and completely lose my train of thought, consequently being incapable of finishing. I’d ask for simple directions to be repeated during professional learning community meetings. I would have all of my thoughts clearly organized in my head, and have the most difficult time articulating them for others.
Here is yet another challenge that Lupus patients are faced with on a daily basis. Thankfully, symptoms do not get progressively worse (they’re actually as unpredictable as all other symptoms). As a professional, this can further interfere with one’s ability to perform at work. As frustrating as this is and difficult to accept, there are a few coping strategies that I’ve found! Some of them I’ve already incorporated into my day and others I look forward to trying out. For those struggling with Lupus, try them! If you know someone with Lupus and are beginning to notice some of these symptoms, please practice patience and understanding as your loved one learns to balance and manage all of these unforeseen challenges.
7 Strategies for Coping with Lupus Fog
1. Jot it all down! I’ve gotten used to bringing paper and pens with me everywhere! According to Dr. Janet Foley Orosz who has suffered with Lupus for over 20 years, during time periods when Lupus Fog symptoms are heightened, it’s important that you put less stress on your working memory. You can do this by writing everything down–grocery lists, birthdays, tasks, important dates and meetings–everything! In doing this, you’ll likely be more successful at maintaining organization and productivity.
2. Organize, organize, and organize some more! I love post-its–I’m not sure that there’s a teacher in the world who doesn’t! I also love using them to jot down my to do lists which is a big no-no. Choose one place (daily planner) to keep all of your notes and appointments so you don’t end up misplacing them, or even worse, with random non-meaningful pieces of paper all over.
3. First things first! Let’s be real–we’re human. It’s nearly impossible for many of us to get all of the items on our to-do lists completed in the time frame that we wish–especially for Lupus patients! I have accepted this and feel minimal remorse when I’ve only checked off 2 of the 5 items on my personal to-do list. You must be able to prioritize your tasks based on their importance. It’s entirely okay if you don’t complete everything…life goes on!
4. Work it out! Just like every other muscle in our bodies, our brain needs exercising too! Reading, playing word games, and solving puzzles (crossword for example) can help enhance your memory. This is even more impactful when you find time to incorporate brain work into your daily routine! Try finding various ways to exercise your mind!
5. Say what you’ve got to say! I take full advantage of having a second teacher in my classroom and share everything with her! As soon as a class relevant thought comes to my mind, she’s first to know! “Things seem to stick better in the short-term memory if you say them aloud,” says Robert Katz, MD, a rheumatologist and associate professor of medicine at Rush Medical College in Chicago. In my case, sharing my thoughts with those around me is like having insurance!
6. Quiet Time! Determine your most productive time of day and run with it! Sit and get any assignments, tasks, chores, etc. completed. I personally work best early in the morning right after my medication settles in. By the end of the day, I am beat, so I try very hard to be productive before 12:00pm. It’s also a great idea to schedule any appointments or meetings with doctors during this time!
7. Be happy and healthy! You must take care of yourself! Reduce the amount of stress you are exposed to, take naps/breaks throughout the day (if possible), get an adequate amount of sleep at night (minimum of 7 hours), and exercise! Doing all of these things can significantly improve your Lupus Fog symptoms. and overall health!
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