Dialing it back; Trial and error

My third week continued with daily headaches, a lot of rest, and and the trial and error process of dialing back my activity level.

Rest is key.  What exactly does that mean?
My doctor emphasized again and again that I needed full rest, both cognitive and physical.  This wasn't something to try to push through.  The brain needs rest and time to heal.  I asked him, how exactly do you define "rest"?  Is it sleeping?  Lying in bed?  Sitting in a chair?  What can/can't I do?  He responded that I didn't need to lie in bed all day, but do only the amount of activity that allows me to get to a  symptom free state.  The goal/challenge was to find that fine line through trial and error and discover what activity I could/couldn't do.

Dialing back the activities
Throughout week 3 and most of week 4 I saw little to no improvement.  I continued to dial back my activity level to practically nothing, hoping each day that I would find a symptom free state.  Symptoms can vary by person, but for me it was fatigue, headaches, feeling foggy, difficult thinking, concentrating, and multi-tasking.  The types of activities that can/can't be tolerated for everyone is different.  There is no checklist to follow of what to do/not do. I wanted a well defined plan of how to manage my way through recovery.  I wanted a checklist.  I wanted to know if I was doing the right or wrong things.  Was I doing too much?  Or, too little?  Unfortunately, I had to be the one to figure those things out.  It takes time and a lot of patience

My experience involved either eliminating or significantly reducing time spent on the following.

- No TV
- No music or audio books
- Very limited driving (only when I absolutely had to)

- Very limited computer (<10 min/day)

- Very limited reading (<10 min/day)

- Very limited time on phone - including phone calls, texts, apps (<10 min)

- Very limited household chores - maybe one load of laundry or emptying the dishwasher and I would feel fatigued; I did nothing that required much physical exertion.

Even with this very limited activity, I was sleeping 8-10 hrs at night and resting or sleeping 2-4 hrs during the day.

So, where does family and child rearing for 3 kids (ages 8, 6, and 4) end up on this list?  I was very fortunate to have help from my family.  A very supportive husband, managing work and family as best he could.  My teenage niece was helping nanny for us during this time.  And when she was unavailable, my parents came to visit to help out. Despite all of the help, it was impossible to completely check out as a mom.  And, I wouldn't have wanted to, no matter how I was feeling.  I still got the kids ready in the morning and saw them off to school or daycare. I typically up and around after the kids were home from school/daycare, for dinner and through the evening routine.  As soon as the kids were in bed, I was in bed.  I made sure I could take adequate rest time before and after these morning and evening routines.  Weekends were tougher, but we managed.  I tried very hard not to overdo it, but I also needed to be there for my kids, accepting help from my husband and family where possible.

What to do?
I spent some of my time just sitting on the porch, the deck, or anyplace where I could watch or listen to my natural surroundings.  I had premonitions of becoming the neighborhood crazy lady who was always on the porch watching every one's comings & goings!  :)   Thankfully, I wasn't too sensitive to sunlight so I could enjoy being outdoors.  Unless I was already fighting a headache, then a dark quiet room was best.  I found I could enjoy relaxing outdoor activities, such as going to the park for a picnic or taking the boat out on the lake on a calm, quiet evening (no tubing, of course!).  I was so thankful for having many great weather days where I could get out of the house and enjoy nature, rest, and relaxation.  Silver lining moments.

Recognizing signs of recovery

I became very frustrated and discouraged when the days/weeks passed and I felt as though I saw no improvements.  Or, only false hopes of improvement when I would feel better for a few hours, but then only to go back downhill again .  However, around the fourth week, both my mom and husband started to point out to me that they noticed I was resting less.  They noticed that I was up and around more.  They noticed when I was more 'present'. I was focused on whether or not I could do more...reading, computer, stuff with the house and kids.  They helped me realize that I needed to look at signs of recovery not only by the activities that I wanted to resume, but instead take note of just being more present and alert as a positive sign.

Day 25 I can remember clear as day.  My parents had returned back to their home.  I was getting through the morning routine with kids and driving them to their respective places.  This was often the toughest part of the day for me as the whole morning routine and driving magnified the pressure I felt squeezing my head.  However, on day 25, as I was driving back home for my usual rest time and I noticed something was different.  No headache!  I couldn't believe it.  I had tears of joy and thanks.  So, it didn't turn out to be an entire day without a headache, but it was most of the day.  And, just because I reached that state for a day or two, doesn't mean it continued.  Ups and downs.  Steps forward, steps backward.  Recovery looked nothing like a linear line of improvement.  It was more like the stock market.  Unpredictable ups and downs, but gradually overtime an upward trend would be seen.