What it’s like to have cognitive issues from Lyme Disease

I don’t have the worst cognitive issues that some lymies do…such as losing years of their memories, forgetting how to speak at all, not being able to read at all. Lyme can do that. But I still have issues. Anything that is taken away from me is an issue. And I will fight to get it back.

I was usually a pretty smart person, or so I was told. I had a successful career, graduated with honors in my Master and Bachelor’s program, did extracurricular clubs and had hobbies. I was always sort of shy so social stuff never came easily to me (remembering names, asking good questions, etc).

When you have a mind that you can trust and most things come fairly easily to you, at least in your chosen field and everyday life, it’s a hard to lose that.

At first it was just a slow and foggy mind. Things would take longer, I’d run out of energy but it was still the same in way.

Then it was trouble remembering what I was doing.

That got a lot worse. I’d go into a room and have no idea why I was there. I would open the fridge and not be sure what I was looking for. I’d log in online and have no idea what my goal was or where to go.

Driving is an issue. I can’t keep track of the places I’m going and i always miss an exit. I’ve had a few close calls so I try to limit long drives and get help with it.

Other issues were trouble tracking. I’ve always had a pretty good attention span. Sure sometimes during long lectures or conversations my mind would drift off but that got worse. Long winded people I can’t follow too well. By the time they are finished with their long story I have no idea what the beginning was about. I can’t read long articles and when I read a book I read a chapter or two at a time, if I’m lucky. Sometimes it’s hard to get that.

Recall of information has been hard too. At one point I remember having trouble remembering the name of the town I was from. People’s names would escape me. Finding the right word was hard a lot. I’d have the words right around it but not the precise one I needed.

I’ve learned to let myself off the hook a little. I was so upset with myself for having these issues and making mistakes. I’ve learned now to let it go. If I go into a room and can’t remember why, I just do something else. It will come back later if it’s important.

But I think cognitive issues is the hardest thing for people to understand. Maybe they think it’s because I’m tired. It can be so hard for me to keep up in a conversation, particularly with multiple people. I tell people I’m slow and they don’t really know what to say. I am not sure how to say this because it sounds arrogant but when things weren’t a struggle for you, but then they are, it still could be functioning at someone-who-is-not-sick’s best. Because mentally we are all different, have different memory capacities, etc. So people may not understand that you are struggling and say, “Oh we all have that.” Even though for you it’s changed.

Also things that were a struggle before are nearly impossible seeming now. Math was always hard, remembering names, history. Even harder. I play to my strengths now. I used to push myself and challenge myself but now every day is a challenge with just daily life so I have to do things that come easier to me. Read topics I already understand a little about. I do art since it’s always been a strength. I write, because I’ve always enjoyed it, but don’t pressure myself to be perfect grammatically.

I do feel like my cognitive issues are a bit better in some ways than at my lowest point but they still prevent me from doing everything I want to do. But I can get around them better and I don’t let them get me down as much. I also know I’m not perfect now, and before it was harder for me to admit I was wrong (ok don’t ask my husband about that). Now since I know I have issues it is easier to admit I made a mistake and to try to improve.


Ways to help with cognitive issues:

  • If someone is talking too fast, try to tell them to slow down.
  • Take notes or have a notetaker for important information (such as a doctor’s appointment).
  • Write yourself notes and place them strategically around the house where you will see them.
  • Set timers for medication and other important events.
  • If misplacing things is a common problem, make it a habit to clean up on the regular so clutter won’t pile up and hide things.
  • Get rid of unwanted items and unnecessary activities. You must streamline your life.
  • Use electronic apps and calendars to help you. Scan documents that are important.
  • Set bills to electronic forms if that is easier to remember.
  • Be up front about your issues when meeting people and let them know you have issues with remembering. Usually people are quite nice about it I’ve found.
  • Turn spellcheck on your computer to all programs. I’ve noticed Lyme people tend to misspell a lot and I do too. But my computer corrects all misspellings so even quick facebook posts can alert me to a misspelled word I might miss otherwise. (Why does spellcheck thing spellcheck is spelled wrong?)

If you have any tips for helping with cognitive issues, please write them in the comments. And be compassionate to those who are struggling with cognitive issues. It’s one of the most humiliating issues for me and I’m sure others too.

I will be getting to some recipe posts soon! I was too tired tonight to get it up and already had this post in the works.

Now I’m off to bed before I fall asleep on my laptop.

kitten laptop




6 thoughts on “What it’s like to have cognitive issues from Lyme Disease

  1. I can’t remember what I plan to do. My memory for past experiences has declined, and my short-term memory is that of a goldfish (or less), but my planning memory is the worst. I can remember a thing or two – but anything else falls off. I’ve been trying to remember to get a new CPAP mask for 9 months, and I can get a new one every 3. I’ve had this one since January, and it has holes it it at this point.

    Writing notes does NOT help me. I can read a note, get a phone call to remind me, have my computer remind me, set alarms on my phone – and I’ll forget what I’m doing before I can walk across the room – and this can go on for months. Or years. My house burned 4 years ago, and the refinisher picked up my furniture December 11, 2009. I still don’t have the last pieces back, because I might call once, but I can’t remember to follow up, and he has the same problem. FOUR YEARS.

    Menopause has taken all my cognitive struggles, and put them on steroids. So much worse. My only fear in this life is dementia.

    • Thanks for commenting and I so appreciate your insight. I even hesitated to write “tips” because really one tip does not fit all. I write notes all the time and they don’t mean much unless they are detailed enough. I should have added that I get tons of help from my husband on the essential things and decoding even what I meant on my note. But it’s a start, as opposed to not writing anything at all, for me.

  2. I’m sorry to hear Lyme has made such an impact on every area of you life. I hope one day you’ll get everything back that you’ve lost. It’s inspiring how even when you get discouraged, you never give up. Do any of the medications affect your memory?

    • Thanks Andrea! I hope so too. I am starting to see improvements so it’s encouraging. I used to take a medicine called Flagyl that breaks up lyme cysts and breaks the blood-brain barrier for lyme, and I definitely felt more foggy and spacey on that. But other medicines and herbs that that make me feel that way I take at night so I don’t have to think.

  3. I have every single one of those problems. It’s very frustrating. Only I am one of those who have lost years. They go by very very quickly for me now. So I’m trying to make the most of my friendships as I can. Most of my friends have Lyme and understand, well mostly.

    I read this last night but didn’t remember this time until I got to your tips section.

    So a little tip I found when reading a book is to use sticky notes instead of bookmarks. I put an arrow on it so I can mark the exact line I was at. And use thin strips of stickies to mark places I want to read again.

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