My best friend is in menopause or as we affectionately renamed it, Mental Pause. She often gets her words mixed up, absolutely sure she’s saying coffee cup, but is actually saying tea bag. She will forget what she was about to do when she walks into a room. She will lose her thought mid-sentence. What was I saying?
Sound familiar?
I, of course being the good friend that I am, tease her about these incidents and make her laugh. Because one of the most frustrating piece of Mental Pause and Chronic Fatigue Syndrome is the effect on your mind. Sometimes it feels like you’re actually losing your mind.
Also Known As (AKA)
While I’m pretty darn healthy and am able to do almost everything I want to do – as far as energy goes a lot of the time… I still struggle with mind gaps. On a good day, I recognize it after the word(s) come out of my mouth. Instead of getting overly frustrated (a little annoyed at myself sometimes I admit), I correct myself with “also known as”. I want to say, “I’m going to get a coffee.” and my brain via my mouth says out loud, “I’m going to get a pen.” Instead, I say, “I’m going to get a coffee also known as a pen.”
This causes confusion to people who don’t know or don’t understand the disease but I don’t care. So what if someone at works thinks I’m occasionally a ditz? I’d rather smile and giggle, going on with my day, doing the best I can with the tools that I have than worry about what other people. Nor do I want to explain CFS to people 30 times a day in my normal job. It feels like complaining when I’m just trying to state the facts; it is what it is. Like it or lump it, this is my life.
On a bad day, I don’t even hear the incorrect word(s). I usually know when those days are by how I’m feeling with my other symptoms (Chronic Fatiguey day) so either avoid people and stay hiding in my office doing easy work that comes very natural or stay home altogether. If I don’t recognize it, my good friends tell me when I’m talking gibberish.
Most Days
I am able to go to work most days and be pretty productive, even when I haven’t slept much. Most days I even sound like a reasonably intelligent person (hopefully!). Even on the good days, my mind jumps all over the place? How do I keep things organized and keep the bases covered in my job and in my life?
- Write things down.
- I keep an overall to do list at work, in my favorite tool – a spreadsheet.
- Every day I write in a daily journal what the important things I need to complete on that day only.
- I use different pens, highlighters, sticky notes, anything to keep the day’s notes easy for me to differentiate. I’m quite visual so I need different shapes and colors; otherwise everything becomes a giant block of nothing.
- When I leave my desk, I open whatever document, web site, e-mail, etc. that I need to work on next. I can guarantee that 90% of the time I won’t remember what my next item was going to be without this trick.
- Re-read my notes and lists. Review, review, review. I may only need to remember for another 5 minutes, but in 30 seconds, it could be gone so until I’m actually doing the task, then I’m reviewing.
- Laugh at myself. Constantly.
- Talk to someone at the end of the day. A good friend, parent, partner, anyone you can. I’m fortunate; I’ve got people at the ready. If you don’t, find a support group, church group, even a meetup group or a pen pal. We all need to talk to someone and get our frustrations out; whether we have CFS or are perfectly healthy.
- Be patient. It may sound like this stuff takes a lot of time, and some days it does. On the good days, it doesn’t take long at all. I’m still amazed at all the stuff I get done in a day.
Take care of yourself, and remember, there are good moments, if not days leading to good months, even years.
Life with CFS 