Saturday, February 23, 2013

Driving in the Fog

photo mine

Here's an interesting question posed to me by a reader:
In my job I drive approximately 800-1000 miles PER WEEK.  The distractibility is a real issue.  But with fatigue and memory problems, so is staying awake and remembering where I'm going, how to get there, etc.  Therein lies my question - do you hear of others with Sjogrens who have to reduce their "normal" driving due to symptoms?  I realize that MY driving isn't anywhere near normal.  But I'm not convinced that it's the distance I'm driving as opposed to the symptoms I'm experiencing.
Wow. That is a lot of driving. Well, that is if you're not my husband, who can think of nothing better than to cover 1000 miles in a DAY, which is what we did last week. Twice. Crazy man. Crazy me for agreeing to go with him. But I digress..

Back to the question: Do you hear of others with Sjogrens who have to reduce their "normal" driving due to symptoms? 

Yes. Yes, I do. I can speak from personal experience as a matter of fact. Those symptoms that you describe as problematic: memory issues, distractibility, thinking and reasoning issues, are often described as "brain fog". You can read more about Sjogrens and brain fog here.

My first experience with a major brain fog episode happened while I was sitting behind the wheel of my car, luckily while I was parked. I looked at the dashboard and couldn't for the life of me remember how to put the car in gear. It was one of the more frightening experiences that I have ever had. There have been days when after venturing out onto the roads in Goldie, that I have realized that my driving skills were dangerous: I couldn't concentrate, my reflexes seemed slow, and it was hard to remember where I was going. So I turned Goldie towards home and abandoned whatever plans that I had thinking that nothing was worth risking an accident that would take lives.

And that's what it all boils down to, isn't it? Knowing yourself well enough to realize that your fatigue and brain fog is making your activities unsafe? My brain fog and fatigue were the symptoms that forced me to quit my job as a nurse since I felt as though my judgment skills were definitely not good when my fatigue was at it's worst, and since my judgment was vital to another person's medical care I couldn't justify taking any chances.

The big question is: WHEN does one cross that line between being mildly impaired to becoming unsafe behind the wheel? It's a big question, but one that only you can answer.

When I know that I need to do some serious driving, there's a few things that help, the biggest being managing my fatigue, since for me, when I am tired, I am STUPID. Seriously. So I try to get plenty of rest before a trip. I also have a prescription for a medication that helps me stay alert: Provigil. I use this drug sparingly since it seems to lose it's effectiveness if I take it routinely. You can read more about Provigil here.

Here's tips from the Sjogren's Syndrome Foundation regarding managing brain fog:
What YOU can do about Brain Fog:
  • Manage your lifestyle to optimize your health and sense of well being.
  • Develop a close working relationship with your doctor(s):
  • Always report changes in cognition/memory and mood (depression, anxiety).
  • Make sure your physician knows about all the prescription and OTC medications you are taking. Especially in patients over 65-70 years of age, a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.
  • Inquire about your hormonal status, thyroid function, and blood pressure.
  • Additional actions:
  • Rejuvenate with sufficient sleep. If after 8-9 hours of sleep you are still tired, tell your doctor.
  • Minimize stress and anxiety
  • Set realistic expectations
  • Plan ahead
  • Take breaks throughout the day
  • Learn relaxation exercises and practice them at regular intervals
  • Balance work and leisure
  • Let yourself laugh
  • Talk about feelings
  • Limit multi-tasking and focus on one task at a time
  • Reduce caffeine and alcohol.
  • Manage effectively musculoskeletal and joint pain.
  • Exercise regularly. Adequate physical exercise enhances cognition/memory.
  • Train the Brain! “If you don’t use it, you will lose it.”
  • Boost your brain power: Continue to work into retirement (part time), learn new skills, volunteer, engage in social and mentally stimulating activities and establish new friendships and relationships.
  • Take your body to the gym and don’t forget to visit the “BRAIN SPA” – both will improve brain function.
  • Recent scientific data show that longevity is associated with the successful management of chronic diseases, such as Sjögren’s syndrome, not the absence of any disease!
Have you experienced problems driving as a result of fatigue and brain fog?


cargillwitch said...

I have a daily 136 km commute from my farm to my office were I work as a nurse co-ordinating perinatal nutrition programs. I also cover two counties doing home visits monitoring new moms and infants. It equals a massive number of kilometers. I have found fatigue to be a real obstacle! I have adapted by folding down the back row of seats in my van and having blankets and pillows available. When I am too tired to drive safely I find a quiet spot and have a cat nap. Usually 20 minutes is all I need to be alert again for the rest of the day. As for confusion I feel for you Julia- I am not in a position where i am dispensing meds as a nurse, there are days I am to scattered to be safe doing so. Thankfully I was well established in public health nursing before the Sjogren's fog hit!

Blogger Mama said...

I was traveling to a friend's house one night. It was a route that I have driven hundreds of times, so I knew where I was going. Slowly, I realized that I just couldn't remember how to get there. I had to pull over, relax myself by playing a few games on my phone. About twenty minutes later I knew where I was going again and got on my way. It was a very scary feeling to have!

Claire Callahan Goodman said...

All these suggestions are super. Also, many people with chronic pain, migraines, and lots of other things are prescribed TOPAMAX. TOPAMAX is well known for creating "brain fog" - it's nickname is "stupidmax". Just a thought - if you are taking it, stop and see if you get a bit clearer.

Anonymous said...

This topic is on the Sjogren's World Forum right now, too.