Friday, January 04, 2013

Looking Back at 2012

Happy New Year!

I just love the start of a new year. It feels hopeful to me, a fresh start, and I am always eager to get back to "real life" after the holiday season.

I don't set resolutions per se, but I do take time at the start of a new year to look back over the past year and set goals for the coming year. I thought I would share with you some of my year-end summary that is relevant to life with CFS, and then, in a later post, some of my goals for 2013.

As many of you already know from past posts, I am a data geek and keep track of how I feel each day with a 1-5 scale (1 is great; 5 is severely crashed). Last year, I looked back at 2011 and saw I had improved overall. Looking back at 2012, I see that I was a little bit worse than the previous year, with an average rating of 2.5 versus 2011's average of 2.4. That's only a 5% change, but I was still surprised to see it because I know I am still able to do much more than I could previously.  Ironically, perhaps that is the problem! With my symptoms less severe these days and crashes less frequent, I think I am often doing too much and pushing past my limits, resulting in more mediocre days and fewer good days.

I didn't really try any new treatments this year, other than switching from short-acting beta blockers to long-acting beta blockers just recently. As I explained to my doctor when she finally insisted I come in for a check-up, I ignored all my own health issues this past year because I was so focused on trying to help our son, Jamie. That is really the #1 thing that overshadowed everything else this past year. For the first 8 months of the year, as in much of the previous year, Jamie was horribly and horrifyingly incapacitated. He missed most of his senior year of high school and struggled mightily to finish enough work to graduate.

The good news is that he is doing much better now. Thanks to beta blockers, lots of new supplements to treat his herx reaction (to Lyme and other tick infection treatment), and perhaps just a case of good timing, he finally improved at the end of August, just in time to start college. That he is able to go to college (3 classes a semester), live on campus, and get back to living a somewhat normal 18-year old life is nothing short of a miracle to us and something that we are grateful for every single day. He still has a long and difficult road ahead, but at least he is now living his life and not trapped on our couch every day.

In looking back at the year, it occurred to me that maybe these two things are related. Perhaps my doing slightly worse had to do with the extreme stress I was under for much of the year (I do actually have data on stress, too, but I haven't gone through it yet!). In addition to watching my son suffer and feeling helpless to do anything (there is no worse feeling in the world), we endured extreme stress in battling his high school teachers and administrators for the accommodations he needed and helping him apply to colleges and for scholarships when he couldn't even sit up most days, not to mention worrying about his future.

So, I am hoping that maybe this coming year, with the stress greatly reduced, I can recover those gains I made in 2011.  Next week, I will share some of my health-related goals for 2013.

How was your 2012?


Never That Easy said...

I love that you are a data nerd, and that Jaime is feeling so much better. 2012 was a real mixed bag for me: I'm glad I got to do the things I did, even though they were bittersweet, and even though I was so much sicker by the end of the year. Being where I was, when I needed to be, was the right thing, but I wish there had been other options. I hope that 2013 is fabulous for all of you... deep breaths! :)

upnorth said...

I used to take meticulous records of my ups and downs...I even graphed them (we are both geeks I guess :)) I no longer have any idea except a gut feeling which years are better or worse. I think that makes a lot of sense about your downtrend being related to the stress of caregiving a really sick son. I hope this year allows you some improvement. Happy New Year Sue.

Pamela said...

So glad Jaime is feeling better and enjoying school!

I find that when I'm feeling worse I can usually link it to feeling better and hence doing more ... interesting correlation. maybe I should track a bit more like you do ...