Posted on Apr 15, 2013 in Blog |

April 15th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth

Memory and Energy

For most Lyme patients, memory and energy are two things they wish they had more of. The memory issues are usually short term memory. We just can’t remember things. At a meeting last week, a friend was telling me about a book she liked and she had to tell me the title three times. I still can’t remember it . . .it’s very frustrating for both parties involved.

When I go to the store for a few items, if it’s more than two, Jeff knows he needs to text me the list. Yes, the joke is, if it’s three items, I may only bring back one. I know some of you are probably chuckling at this, but it’s a REAL problem for Lyme patients.

We also tend to lack our ability for Executive Functioning skills. When I have a flare up, I can’t prioritize my work tasks. I can’t figure out a budget for the month/year. I can’t read and comprehend. The brain literally feels too tired.

And the fatigue comes down to the body as well. This isn’t just a ‘I’m so tired, I think I’ll take a nap’ fatigue. This is a fatigue at a CELLULAR LEVEL. This fatigue is so severe that most of us can only lie flat on our beds and stare at the ceiling. Even the TV is too much stimulation and overwhelming to take in. Forget reading a book or knitting. Impossible.

And the most frustrating part of this is that we never know when it will hit. Last week, I came home in the middle of the day and slept DEEPLY for two hours, then I went back to work because someone was coming in meet with me. But I knew that if I didn’t go home and rest, I would never have been able to have that meeting. I felt a little better, made the meeting, and then came back home and went back to bed.

This past week, my fatigue lasted five days. And I was panic-stricken at some points, wondering if I was relapsing . . . my physician says that’s the PTSD (post traumatic stress disorder) still kicking in. And then, on Thursday, I was fine again. But it’s very hard to plan a life when you don’t know when the fatigue or memory failure will happen.

My friend Deb suggested a few things she does to help with her memory issues:
*Always put your keys in the same place. Ritual and repetition.
*White boards on the back of the front door with the list of what you shouldn’t forget that day.
*Putting the things you pack in your lunch together in the fridge.
*Putting the pills you take at the same time together or doing daily pill containers
*Timers on your phone.
*Have one friend who’s job it is to remind you of one thing. You have 5 friends you get 5 reminders.

Some things that help me:

– I email myself reminders of things I need to do
– iPhone alarms for putting the trash out each week.
-Hook by the door for keys
-Hook by the door for dog leashes
-Texting myself the grocery list – or putting it under Notes, but sometimes I forget to look there.
-Routine, ritual, routine, ritual, routine, ritual.
-Offer my son $5 to find my glasses and then pay him when he does (and keep a spare pair for when you still can’t find them.) – that goes for the car keys as well.
-Regular schedule. Try to make each day similar in routine.
-Hang around with people who don’t judge me for my forgetfulness or fatigue. They don’t have to understand it; they just need to respect it.