Tag Archives: memory

10 Things I Wish I’d Known About Lyme Disease

IV treatment. Pills. More pills. I can't believe I made it through all that. When it could have been avoided...

That’s the little portable pump for my IV drugs. Then there were the pills. More pills. Harsh meds that made me sicker so I could get better. I can’t believe I made it through all that. When it could have been avoided…



It’s 2016, and I’m finally climbing out of the Lyme hell I fell into blindly four-and-a-half years ago. If only I’d known more, sooner.

Maybe I can help someone, somewhere, by offering a few things I was shocked to learn. Frankly, it is damned hard to pick just 10 things. But here goes:  Continue reading

Memory Tip: Pencil It In

It was definitely a bummer seeing all the things crossed out on my  kitchen calendar.

It was definitely a bummer seeing all the things crossed out on my kitchen calendar.

I heard an excellent idea from a former Lyme patient who now makes her living helping others manage all the ins-and-outs of this disease. She suggests ditching pens for pencils when it comes to writing down calendar entries.

Because back when she was ill, she started noting social events and appointments in pencil. That way, she says, if she had to cancel something, she could erase it and move on. She didn’t have the stress of seeing her calendar filled with all the thing she crossed off because of Lyme.

That’s an idea we can all use as we move into 2013. In the past few days alone, I have had to miss the funeral of a friend’s mother, pass on my wonderful brother-in-law’s major birthday celebration four hours away in New Jersey, and cancel a reunion lunch with a dear family friend.

At least when I look at my kitchen calendar now, I’m not reminded of all that, and can look to the next week with a fresh outlook.


My Brain on Lyme

Lame brain, Jello brain... lyme brain. Credit: skpy's Flickr stream

Lame brain, Jello brain… Lyme brain.
Credit: skpy’s Flickr stream

There was a time when I thought Lyme disease meant a fever with other flu-like symptoms and a bull’s-eye rash lasting maybe a few weeks. Even when I read that these infections can cause problems with cognition, I didn’t really get it.

Early on as my mind faltered, I thought, “Damn, it’s really happening, I’m getting older and my brain just isn’t working like it used to.” Then I figured, “Wow, the pain and fatigue from this illness are really affecting my ability to think.”

My teenaged son would look at me like I was crazy when I’d forget something we were supposed to do together. I took him to the dentist on the wrong day, even though I looked at the appointment right there on the kitchen calendar a dozen times. On some days, my brain just could not take in information correctly.

I’d blank out on the names of long-time colleagues, or struggle to put together copy for an assignment that should have been easy after many years of writing professionally.

I’d turned 50. I thought the trouble was aging. Turns out it was my brain on Lyme. Continue reading

Lyme-Brain? 5 Tips to Help Your Flagging Memory

  1. Calendar. I use an actual calendar, not the virtual version on my computer, and keep it in the kitchen where I’m most likely to see it. The blocks for days are big enough to hold not just appointments, but my task lists. I cross items off as they are completed; with this visual record in plain sight, things are less likely to slip through the cracks.

    Post-its are the visual cues that help me keep track of everything from doctor’s appointments to sticking to 50% of what I think I can do instead of being too active and triggering a set-back.

  2. Post-its. A calendar is great, but on bad days when my mind isn’t working well, I’ve still missed things. A cheerful neon post-it placed to catch my eye – on the coffee pot, for example – serves as a reliable back-up prompt that I can literally carry with me when I leave the house if I feel the need.
  3. Smartphone apps. Our phones are always at hand, so if you’ve got a smartphone, don’t overlook reminder apps, the high-tech version of my post-its.  With many options, you can find one ideal for your needs.
  4. Daily symptom log. Remembering everything you want to tell your doctor can be a challenge. I use my daily symptom log  to make a concise list before appointments, so the doctor and I have an accurate picture of how I am doing over time.
  5. A system for organizing paperwork. Dealing with a major illness is a big job. I’ve felt overwhelmed trying to keep the deluge of information straight: notes, tests, doctor’s visits, bills, insurance claims, medications, treatment instructions. Even if lyme isn’t affecting your memory, you can’t remember all that! So you need to be able to put your hands on critical information when you need it. Create a notebook or folder system and file each item as it comes along. (Too much to handle right now? A former lyme patient and her doctor have done the work for you: My Lyme Guide.)